MEpedia - User contributions [en]

Maria Leandro

2025-08-30T12:31:15Z

Forestglip:Fix URL

{{stub}}
{{NeedsImage}}
'''Maria Leandro''', MD, PhD, is a Consultant Rheumatologist and a researcher at the Division of Medicine, Centre of Rheumatology Research, University College London, London, [[United Kingdom]]. Her research interests are in inflammatory arthritis, rheumatoid arthritis, [[B cell]] directed therapies in autoimmune diseases and role of B cells in the pathogenesis of autoimmune diseases.<ref>{{Cite web|url=https://www.uclh.nhs.uk/our-services/find-consultant/dr-maria-leandro | title = Dr Maria Leandro - UCL Hospitals|last = | first = | date = |website=|archive-url=|archive-date=|url-status=|access-date=}}</ref>

== Notable studies ==
*2016, Extended [[B cell]] phenotype in patients with [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]]: A cross-sectional study<ref name="Mensah, 2016" /> [https://onlinelibrary.wiley.com/doi/full/10.1111/cei.12749 (Full Text)]
* 2018, [[CD24]] Expression and [[B cell|B Cell]] Maturation Shows a Novel Link With [[Metabolic|Energy Metabolism]]: Potential Implications for Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref>{{Cite journal | title = CD24 Expression and B Cell Maturation Shows a Novel Link With Energy Metabolism: Potential Implications for Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.frontiersin.org/articles/10.3389/fimmu.2018.02421/full|journal=Frontiers in Immunology | date = 2018 | issn=1664-3224|volume=9|doi=10.3389/fimmu.2018.02421|language=English|first = Fane F.K. | last = Mensah | first2 = Christopher W. | last2 = Armstrong | first3 = Venkat | last3 = Reddy | first4 = Amolak S. | last4 = Bansal | first5 = Saul | last5 = Berkovitz | first6 = Maria J. | last6 = Leandro | first7 = Geraldine | last7 = Cambridge|pages=|via= | author-link = Fane Mensah | authorlink2 = Christopher Armstrong | authorlink7 = Geraldine Cambridge | authorlink3 = Venkat Reddy | authorlink4 = Amolak Bansal | authorlink5 = Saul Berkovitz | authorlink6 = Maria Leandro}}</ref> [https://www.frontiersin.org/articles/10.3389/fimmu.2018.02421/full (Full Text)]

== Online presence ==

== See also ==

== Learn more ==

== References ==
<references>
<ref name="Mensah, 2016">{{Citation | last = Mensah | first1 = Fane | authorlink1 = Fane Mensah | last2 = Bansal | first2 = Amolak | authorlink2 = Amolak Bansal | last3 = Berkovitz | first3 = Saul | authorlink3 = Saul Berkovitz | last4 = Sharma | first4 = Arti | authorlink4 = | last5 = Reddy | first5 = Venkat | authorlink5 = Venkat Reddy | last6 = Leandro | first6 = Maria | authorlink6 = Maria Leandro | last7 = Cambridge | first7 = Geraldine | authorlink7 = Geraldine Cambridge | title = Extended B cell phenotype in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A cross-sectional study | journal = Clinical and Experimental Immunology | volume = 184 | issue = 2 | page = 237-247 | date = 2016 | pmid = | doi = 10.1111/cei.12749 }}</ref>
</references>
[[Category:Researchers]]
[[Category:UK researchers]]

Jonathan Edwards

2024-12-27T04:49:54Z

Forestglip:/* Publications related to ME/CFS */ typo

[[File:Jonathan Edwards.png|thumb|Source: phoenixrising.me]]
Professor [https://iris.ucl.ac.uk/iris/browse/profile?upi=JCEDW24 Jonathan Edwards] is an Emeritus Professor of Connective Tissue Medicine at University College London (UCL) in the UK. Professor Edwards was instrumental in the discovery of the use of B-cell depletion therapy ([[Rituximab]]) to treat rheumatoid arthritis.<ref>{{Cite web | url = https://www.ucl.ac.uk/impact/case-study-repository/b-cell-depletion-rheumatoid-arthritis | title = B cell depletion: an effective therapy in rheumatoid arthritis | website = ucl.ac.uk|language=en|access-date=2018-08-30}}</ref>

==B-cell depletion ME/CFS research==
Professor Edwards became interested in the possible use of [[Rituximab]] to treat [[ME/CFS]] after attending the [[Invest in ME International ME Conference]] in May 2013 and subsequently agreed to advise on and lead the effort.<ref>{{Cite web | url = https://forums.phoenixrising.me/threads/interview-professor-jonathan-edwards-on-the-uk-rituximab-trial.25070/ | title = Interview: Professor Jonathan Edwards on the UK Rituximab trial | website = Phoenix Rising ME / CFS Forums|language=en-US|access-date=2019-12-04}}</ref>

==Committees and boards==
===Phoenix Rising===
Professor Edwards once served on the board of directors of the online patient community [[Phoenix Rising]].<ref>{{Cite news | url=http://phoenixrising.me/archives/26017 | title = Phoenix Rising Adds Two New Board Members | last = | first = | date = Oct 6, 2014|work=Phoenix Rising|access-date=2018-08-30|archive-url=|archive-date=|url-status=|language=en-US}}</ref>

===Science for ME===
Professor Edwards is currently active on the [[Science for ME]] forum. <ref>{{Cite web | url = https://www.s4me.info/index.php?members/jonathan-edwards.25/ | title = Science for ME Profile Page | last = Edwards | first = Jonathan | date = |website=s4me.info|archive-url=|archive-date=|url-status=|access-date=}}</ref>

== Advocacy ==

=== '''Letter to Scottish Parliament''' ===
Emma Shorter on behalf of ME Action called on the Scottish Parliament to review the level of support for people with Myalgic Encephalomyelitis (ME) in Scotland <ref>{{Cite web | url = https://www.parliament.scot/GettingInvolved/Petitions/PE01690 | title = PE01690: Review treatment of people with ME in Scotland | date = 2020-07-01 | website = parliament.scot|access-date=2020-03-02}}</ref>. Dr Edwards wrote a letter which was submitted as evidence <ref>{{Cite web | url = https://www.parliament.scot/S5_PublicPetitionsCommittee/Submissions%202018/PE1690_F.pdf | title=PE01690_F:Professor Jonathan CW Edwards submission | date = 2020-07-01 | website = parliament.scot|access-date=2020-03-02}}</ref>.

===Open Letters to ''The Lancet''===
In response to ''The Lancet''<nowiki/>'s publication of the controversial [[PACE trial]] in 2011, three [[open letter to the Lancet|open letters to the editor of ''The Lancet'']] urged the [[Richard Horton|editor, Richard Horton,]] to commission a fully independent review of the [[PACE trial]]. Dr. Edwards signed all three. The first, written in 2015, was signed by Dr. Edwards and five of his colleagues. In 2016, thirty-six additional colleagues in the [[ME/CFS]] field, signed the second letter. In 2018, a resubmitted letter had over one hundred signatories.
*Nov 13, 2015, [http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ An open letter to Dr. Richard Horton and The Lancet]<ref>{{Cite web | url = http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ | title = An open letter to Dr. Richard Horton and The Lancet | last = Tuller | first = David | date = Nov 13, 2015 | website = Virology Blog|archive-url=|archive-date=|url-status=|access-date=}}</ref>
*Feb 10, 2016, [http://www.virology.ws/2016/02/10/open-letter-lancet-again/ An open letter to The Lancet, again - Virology blog]<ref>{{Cite web | url = http://www.virology.ws/2016/02/10/open-letter-lancet-again/ | title = An open letter to The Lancet, again | last = Tuller | first = David | date = Feb 10, 2016 | website = Virology Blog|archive-url=|archive-date=|url-status=|access-date=}}</ref>
*Jul 9, 2018, [http://www.virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/ Yet Another Appeal to The Lancet, With More On Board]<ref>{{Cite web | url = http://www.virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/ | title = Trial By Error: Yet Another Appeal to The Lancet, With More On Board | last = Tuller | first = David | date = Jul 10, 2018 | website = Virology Blog|archive-url=|archive-date=|url-status=|access-date=}}</ref>

==Publications related to ME/CFS==
*2016, The biological challenge of [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]]: a solvable problem, Editorial by Jonathan C.W. Edwards, [[Simon McGrath]], Adrian Baldwin, Mark Livingstone & Andrew Kewley<ref>{{Cite journal | last = Edwards | first = Jonathan C.W. | authorlink = Jonathan Edwards | last2 = McGrath | first2 = Simon | authorlink2 = Simon McGrath | last3 = Baldwin | first3 = Adrian | authorlink3 = | last4 = Livingstone | first4 = Mark | authorlink4 = | last5 = Kewley | first5 = Andrew | authorlink5 = | date = 2016-04-02 | title = The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem | url = http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=4|issue=2 | pages = 63–69|doi=10.1080/21641846.2016.1160598|issn=2164-1846|pmc=4867862|pmid=27226928|access-date=|quote=|via=}}</ref> - [http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598 (Full Text)]
*2017, [[PACE Trial Management Group|PACE team]] response shows a disregard for the principles of science in ''Journal of Health Psychology''<ref>{{Cite web | url = http://journals.sagepub.com/doi/full/10.1177/1359105317700886 | title = PACE team response shows a disregard for the principles of science | last = Edwards | first = Jonathan Edwards | date = Mar 28, 2017 | website = journals.sage.pub|publisher=Journal of Health Psychology|archive-url=|archive-date=|url-status=|access-date=}}</ref> - [http://journals.sagepub.com/doi/full/10.1177/1359105317700886 (Full Text)]
*2024, Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206 - [https://www.qeios.com/read/T9SXEU.3 (Full Text)]

==Talks and interviews==
* Sep 3, 2013, [http://phoenixrising.me/archives/18701 Interview: Professor Jonathan Edwards on the UK Rituximab trial]<ref>{{Cite web | url = https://phoenixrising.me/archives/18701 | title = Interview: Professor Jonathan Edwards on the UK Rituximab trial | last = | first = | date = Sep 3, 2013 | website = |publisher=Phoenix Rising|archive-url=|archive-date=|url-status=|access-date=}}</ref>

*May 30, 2014, Keynote Speaker at the 9th [[Invest in ME International ME Conference]] - [http://www.investinme.org/IIMEC9.shtml#dvd DVD available]<ref>{{Cite web | url = http://www.investinme.org/IIMEC9.shtml#dvd | title = IIMEC9 Conference DVD | last = | first = | date = |website=IIMEC9|archive-url=|archive-date=|url-status=|access-date=}}</ref>
*Dec 02, 2019 - [https://www.virology.ws/2019/12/02/trial-by-error-professor-jonathan-edwards-view-of-me/ Trial By Error: Professor Jonathan Edwards’ View of ME]

==See also==
*[[Jo Cambridge]]
*[[Intimidation of PACE critics]]
*[[Invest in ME]]
*[[Rituximab]]

== Learn more ==
* Jul 20, 2018, [https://www.meassociation.org.uk/wp-content/uploads/Dear-Professor-Watt-Jo-Edwards-MRC-PACE-Trial-July-2018.pdf Letter to Professor Fiona Watt]<ref>{{Cite web | url = https://www.meassociation.org.uk/wp-content/uploads/Dear-Professor-Watt-Jo-Edwards-MRC-PACE-Trial-July-2018.pdf | title=Letter to Professor Watt | last = Edwards | first = Jonathan | date = Jul 20, 2018 | website = meassociation.com|archive-url=|archive-date=|url-status=|access-date=}}</ref>
==References==
{{Reflist}}

[[Category:Researchers]]
[[Category:UK researchers]]
[[Category:Psychological paradigm critics]]
[[Category:PACE trial critics]]

List of ME/CFS studies controlling for deconditioning

2024-09-07T19:12:20Z

Forestglip:Added studies

Some major potential confounding factors inherent in research on ME/CFS patients include physical deconditioning and social isolation, but these are often not controlled for. A biological abnormality may be present because of a fundamental ME pathway, or it may be an effect of little to no exercise, and would be seen in any sedentary population. This page lists biological marker studies which attempt to control for deconditioning in any observed differences between groups, for example by including a second control group of severely deconditioned people. It is important to note that deconditioning and social isolation are consequences and not causes of ME/CFS.<ref>{{Cite journal|title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management|date=November 2021|url=https://doi.org/10.1016/j.mayocp.2021.07.004|journal=Mayo Clinic Proceedings|volume=96|issue=11|pages=2861–2878|last=Bateman|first=Lucinda|last2=Bested|first2=Alison C.|last3=Bonilla|first3=Hector F.|last4=Chheda|first4=Bela V.|last5=Chu|first5=Lily|last6=Curtin|first6=Jennifer M.|last7=Dempsey|first7=Tania T.|last8=Dimmock|first8=Mary E.|last9=Dowell|first9=Theresa G.|last10=Felsenstein|first10=Donna|last11=Kaufman|first11=David L.|doi=10.1016/j.mayocp.2021.07.004|issn=0025-6196}}</ref>

== Studies ==

* Understanding Muscle Dysfunction in Chronic Fatigue Syndrome, 2016<ref>{{Cite journal|title=Understanding Muscle Dysfunction in Chronic Fatigue Syndrome|date=2016|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779819/|journal=Journal of Aging Research|volume=2016|pages=2497348|last=Rutherford|first=Gina|last2=Manning|first2=Philip|last3=Newton|first3=Julia L.|doi=10.1155/2016/2497348|pmc=4779819|pmid=26998359|issn=2090-2204}}</ref>
** This paper describes two studies that tested muscle acidosis after repeat exercise, one in ME/CFS<ref>{{Cite journal|title=Effects of H₂O₂ on electrical membrane properties of skeletal myotubes|date=Jan 15, 2011|url=https://pubmed.ncbi.nlm.nih.gov/21109001/|journal=Free Radical Biology & Medicine|volume=50|issue=2|pages=337–344|last=Luin|first=Elisa|last2=Giniatullin|first2=Rashid|last3=Sciancalepore|first3=Marina|doi=10.1016/j.freeradbiomed.2010.11.015|pmid=21109001|issn=1873-4596}}</ref> and the other in primary biliary cirrhosis (PBC)<ref name=":0">{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=Jul 2010|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref>. They say that PBC causes a similar level of fatigue to ME/CFS.<ref>{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=Jul 2010|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref> The studies showed that both groups showed abnormally high intramuscular acidosis after exercise. But in contrast, the level of acidosis decreases with repeat exercise in PBC, but not in ME/CFS.
* [[Buspirone challenge test]]
** When buspirone is given to people with ME/CFS, the resulting increase in prolactin is greater than in healthy controls. Studies have also shown a similar abnormally high response in other conditions, such as dyspepsia and social anxiety disorder. A similar response to healthy controls was seen in people with '''depression''' or mania. The opposite response, lower prolactin, was seen in those with schizophrenia.
* Plasma metabolomics reveals disrupted response and recovery following maximal exercise in myalgic encephalomyelitis/chronic fatigue syndrome, 2022, Germain et al<ref>{{Cite journal |last=Germain |first=Arnaud |last2=Giloteaux |first2=Ludovic |last3=Moore |first3=Geoffrey E. |last4=Levine |first4=Susan M. |last5=Chia |first5=John K. |last6=Keller |first6=Betsy A. |last7=Stevens |first7=Jared |last8=Franconi |first8=Carl J. |last9=Mao |first9=Xiangling |last10=Shungu |first10=Dikoma C. |last11=Grimson |first11=Andrew |last12=Hanson |first12=Maureen R. |date=2023-10-27 |title=Plasma metabolomics reveals disrupted response and recovery following maximal exercise in myalgic encephalomyelitis/chronic fatigue syndrome |url=https://insight.jci.org/articles/view/157621 |journal=JCI Insight |language=en |volume=7 |issue=9 |doi=10.1172/jci.insight.157621 |issn=0021-9738 |pmc=PMC9090259 |pmid=35358096}}</ref>
*Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients, 2023, Glass et al<ref>{{Cite journal|title=Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients|date=2023|url=https://www.mdpi.com/1422-0067/24/4/3685|journal=International Journal of Molecular Sciences|volume=24|issue=4|pages=3685|last=Glass|first=Katherine A.|last2=Germain|first2=Arnaud|last3=Huang|first3=Yuhsin V.|last4=Hanson|first4=Maureen R.|language=en|doi=10.3390/ijms24043685|pmc=9958671|pmid=36835097|issn=1422-0067}}</ref>
*Dysregulation of extracellular vesicle protein cargo in female myalgic encephalomyelitis/chronic fatigue syndrome cases and sedentary controls in response to maximal exercise, 2024, Giloteaux et al<ref>{{Cite journal |last=Giloteaux |first=Ludovic |last2=Glass |first2=Katherine A. |last3=Germain |first3=Arnaud |last4=Franconi |first4=Carl J. |last5=Zhang |first5=Sheng |last6=Hanson |first6=Maureen R. |date=Jan 2024 |title=Dysregulation of extracellular vesicle protein cargo in female myalgic encephalomyelitis/chronic fatigue syndrome cases and sedentary controls in response to maximal exercise |url=https://isevjournals.onlinelibrary.wiley.com/doi/10.1002/jev2.12403 |journal=Journal of Extracellular Vesicles |language=en |volume=13 |issue=1 |doi=10.1002/jev2.12403 |issn=2001-3078 |pmc=PMC10764978 |pmid=38173127}}</ref>
*Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment considerations, 2024, Keller et al<ref>{{Cite journal|title=Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment considerations|date=2024-07-05|url=https://doi.org/10.1186/s12967-024-05410-5|journal=Journal of Translational Medicine|volume=22|issue=1|pages=627|last=Keller|first=Betsy|last2=Receno|first2=Candace N.|last3=Franconi|first3=Carl J.|last4=Harenberg|first4=Sebastian|last5=Stevens|first5=Jared|last6=Mao|first6=Xiangling|last7=Stevens|first7=Staci R.|last8=Moore|first8=Geoff|last9=Levine|first9=Susan|last10=Chia|first10=John|last11=Shungu|first11=Dikoma|doi=10.1186/s12967-024-05410-5|issn=1479-5876}}</ref>
*Absence of BOLD adaptation in chronic fatigue syndrome revealed by task functional MRI, 2024, Schönberg et al<ref>{{Cite journal |last=Schönberg |first=Laura |last2=Mohamed |first2=Abdalla Z |last3=Yu |first3=Qiang |last4=Kwiatek |first4=Richard A |last5=Del Fante |first5=Peter |last6=Calhoun |first6=Vince D |last7=Shan |first7=Zack Y |date=2024-08-07 |title=Absence of BOLD adaptation in chronic fatigue syndrome revealed by task functional MRI |url=https://journals.sagepub.com/doi/10.1177/0271678X241270528 |journal=Journal of Cerebral Blood Flow & Metabolism |language=en |doi=10.1177/0271678X241270528 |issn=0271-678X}}</ref>
*Single-cell transcriptomics of the immune system in ME/CFS at baseline and following symptom provocation, 2024, Vu et al<ref>{{Cite journal|title=Single-cell transcriptomics of the immune system in ME/CFS at baseline and following symptom provocation|date=Jan 2024|url=https://doi.org/10.1016/j.xcrm.2023.101373|journal=Cell Reports Medicine|volume=5|issue=1|pages=101373|last=Vu|first=Luyen Tien|last2=Ahmed|first2=Faraz|last3=Zhu|first3=Hongya|last4=Iu|first4=David Shing Huk|last5=Fogarty|first5=Elizabeth A.|last6=Kwak|first6=Yeonui|last7=Chen|first7=Weizhong|last8=Franconi|first8=Carl J.|last9=Munn|first9=Paul R.|last10=Tate|first10=Ann E.|last11=Levine|first11=Susan M.|doi=10.1016/j.xcrm.2023.101373|pmc=PMC10829790|pmid=38232699|issn=2666-3791}}</ref>

==See also==

==Learn more==


==References==
{{Reflist}}

[[Category:Notable Studies]]
[[Category:Lists]]

List of ME/CFS studies controlling for deconditioning

2024-08-16T20:35:01Z

Forestglip:added study /* Studies */

Some major potential confounding factors inherent in research on ME/CFS patients include physical deconditioning and social isolation, but these are often not controlled for. A biological abnormality may be present because of a fundamental ME pathway, or it may be an effect of little to no exercise, and would be seen in any sedentary population. This page lists biological marker studies which attempt to control for deconditioning in any observed differences between groups, for example by including a second control group of severely deconditioned people. It is important to note that deconditioning and social isolation are consequences and not causes of ME/CFS.<ref>{{Cite journal|title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management|date=November 2021|url=https://doi.org/10.1016/j.mayocp.2021.07.004|journal=Mayo Clinic Proceedings|volume=96|issue=11|pages=2861–2878|last=Bateman|first=Lucinda|last2=Bested|first2=Alison C.|last3=Bonilla|first3=Hector F.|last4=Chheda|first4=Bela V.|last5=Chu|first5=Lily|last6=Curtin|first6=Jennifer M.|last7=Dempsey|first7=Tania T.|last8=Dimmock|first8=Mary E.|last9=Dowell|first9=Theresa G.|last10=Felsenstein|first10=Donna|last11=Kaufman|first11=David L.|doi=10.1016/j.mayocp.2021.07.004|issn=0025-6196}}</ref>

== Studies ==

* Understanding Muscle Dysfunction in Chronic Fatigue Syndrome, 2016<ref>{{Cite journal|title=Understanding Muscle Dysfunction in Chronic Fatigue Syndrome|date=2016|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779819/|journal=Journal of Aging Research|volume=2016|pages=2497348|last=Rutherford|first=Gina|last2=Manning|first2=Philip|last3=Newton|first3=Julia L.|doi=10.1155/2016/2497348|pmc=4779819|pmid=26998359|issn=2090-2204}}</ref>
** This paper describes two studies that tested muscle acidosis after repeat exercise, one in ME/CFS<ref>{{Cite journal|title=Effects of H₂O₂ on electrical membrane properties of skeletal myotubes|date=Jan 15, 2011|url=https://pubmed.ncbi.nlm.nih.gov/21109001/|journal=Free Radical Biology & Medicine|volume=50|issue=2|pages=337–344|last=Luin|first=Elisa|last2=Giniatullin|first2=Rashid|last3=Sciancalepore|first3=Marina|doi=10.1016/j.freeradbiomed.2010.11.015|pmid=21109001|issn=1873-4596}}</ref> and the other in primary biliary cirrhosis (PBC)<ref name=":0">{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=Jul 2010|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref>. They say that PBC causes a similar level of fatigue to ME/CFS.<ref>{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=Jul 2010|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref> The studies showed that both groups showed abnormally high intramuscular acidosis after exercise. But in contrast, the level of acidosis decreases with repeat exercise in PBC, but not in ME/CFS.
* [[Buspirone challenge test]]
** When buspirone is given to people with ME/CFS, the resulting increase in prolactin is greater than in healthy controls. Studies have also shown a similar abnormally high response in other conditions, such as dyspepsia and social anxiety disorder. A similar response to healthy controls was seen in people with '''depression''' or mania. The opposite response, lower prolactin, was seen in those with schizophrenia.
* Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients, 2023, Glass et al<ref>{{Cite journal|title=Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients|date=2023|url=https://www.mdpi.com/1422-0067/24/4/3685|journal=International Journal of Molecular Sciences|volume=24|issue=4|pages=3685|last=Glass|first=Katherine A.|last2=Germain|first2=Arnaud|last3=Huang|first3=Yuhsin V.|last4=Hanson|first4=Maureen R.|language=en|doi=10.3390/ijms24043685|pmc=9958671|pmid=36835097|issn=1422-0067}}</ref>
*Dysregulation of extracellular vesicle protein cargo in female myalgic encephalomyelitis/chronic fatigue syndrome cases and sedentary controls in response to maximal exercise, 2024, Giloteaux et al<ref>{{Cite journal |last=Giloteaux |first=Ludovic |last2=Glass |first2=Katherine A. |last3=Germain |first3=Arnaud |last4=Franconi |first4=Carl J. |last5=Zhang |first5=Sheng |last6=Hanson |first6=Maureen R. |date=Jan 2024 |title=Dysregulation of extracellular vesicle protein cargo in female myalgic encephalomyelitis/chronic fatigue syndrome cases and sedentary controls in response to maximal exercise |url=https://isevjournals.onlinelibrary.wiley.com/doi/10.1002/jev2.12403 |journal=Journal of Extracellular Vesicles |language=en |volume=13 |issue=1 |doi=10.1002/jev2.12403 |issn=2001-3078 |pmc=PMC10764978 |pmid=38173127}}</ref>
*Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment considerations, 2024, Keller et al<ref>{{Cite journal|title=Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment considerations|date=2024-07-05|url=https://doi.org/10.1186/s12967-024-05410-5|journal=Journal of Translational Medicine|volume=22|issue=1|pages=627|last=Keller|first=Betsy|last2=Receno|first2=Candace N.|last3=Franconi|first3=Carl J.|last4=Harenberg|first4=Sebastian|last5=Stevens|first5=Jared|last6=Mao|first6=Xiangling|last7=Stevens|first7=Staci R.|last8=Moore|first8=Geoff|last9=Levine|first9=Susan|last10=Chia|first10=John|last11=Shungu|first11=Dikoma|doi=10.1186/s12967-024-05410-5|issn=1479-5876}}</ref>
*Absence of BOLD adaptation in chronic fatigue syndrome revealed by task functional MRI, 2024, Schönberg et al<ref>{{Cite journal |last=Schönberg |first=Laura |last2=Mohamed |first2=Abdalla Z |last3=Yu |first3=Qiang |last4=Kwiatek |first4=Richard A |last5=Del Fante |first5=Peter |last6=Calhoun |first6=Vince D |last7=Shan |first7=Zack Y |date=2024-08-07 |title=Absence of BOLD adaptation in chronic fatigue syndrome revealed by task functional MRI |url=https://journals.sagepub.com/doi/10.1177/0271678X241270528 |journal=Journal of Cerebral Blood Flow & Metabolism |language=en |doi=10.1177/0271678X241270528 |issn=0271-678X}}</ref>

==See also==

==Learn more==


==References==
{{Reflist}}

[[Category:Notable Studies]]
[[Category:Lists]]

Two-day cardiopulmonary exercise test

2024-07-20T13:18:26Z

Forestglip:added citations to table, corrected number of patients for one study

'''Two-day cardiopulmonary exercise test or 2-day CPET''' is a procedure which assesses exercise capacity and recovery by performing two exercise tests 24 hours apart.<ref name=":2">{{Cite journal | last =Stevens | first = Staci | last2 = Snell | first2 = Chris | last3 = Stevens | first3 = Jared | last4 = Keller | first4=Betsy | last5 = VanNess | first5 = J. Mark | date = 2018 | title=Cardiopulmonary Exercise Test Methodology for Assessing Exertion Intolerance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/30234078|journal=Frontiers in Pediatrics|volume=6|pages=242|doi=10.3389/fped.2018.00242|issn=2296-2360|pmc=6131594|pmid=30234078}}</ref> The hypothesis is that ME/CFS patients display a characteristic deterioration in exercise capacity on the second test, a finding that has been reported by multiple research groups.<ref name=":1" /><ref name=":3" /><ref name=":0" />[[File:CPET.jpg|alt=Photo of a woman walking on a treadmill while wearing a clear mask over her nose and mouth, and attached to a cart holding medical equipment.|thumb|350x350px|Cardiopulmonary Exercise Test]]The maximal, symptom-limited [[cardiopulmonary exercise test]] (CPET) is considered the gold standard for measuring physical capacity.<ref>{{Cite journal | last =Chandra | first=Divay|author-link = | last2 = Wise | first2 = Robert A.|author-link2 = | last3 = Kulkarni | first3 = Hrishikesh S. | author-link3 = | last4 = Benzo | first4 = Roberto P. | authorlink4 = | last5 = Criner | first5 = Gerard | authorlink5 = | last6 = Make | first6 = Barry | authorlink6 = | last7 = Slivka | first7 = William A. | last8 = Ries | first8 = Andrew L. | last9 = Reilly | first9 = John J. | date = Dec 2012 | title = Optimizing the 6-Min Walk Test as a Measure of Exercise Capacity in COPD|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3515028/|journal=Chest|volume=142|issue=6|pages=1545–1552|doi=10.1378/chest.11-2702|issn=0012-3692|pmc=3515028|pmid=23364913|quote=|via=}}</ref><ref>{{Cite journal | last =Demir | first = Rengin|author-link = | last2 = Küçükoğlu | first2 = Mehmet Serdar | authorlink2 = | date = Dec 2010 | title = Evaluation of exercise capacity in pulmonary arterial hypertension|url=https://www.ncbi.nlm.nih.gov/m/pubmed/21248462/|journal=Turk Kardiyoloji Dernegi Arsivi: Turk Kardiyoloji Derneginin Yayin Organidir|volume=38|issue=8|pages=580–588|issn=1016-5169|pmid=21248462|quote=|via=}}</ref> This test measures gas exchange parameters using a mouthpiece or mask, while participants exercise on a treadmill or stationary bicycle with a controlled increase in resistance or power output. It is commonly used to measure the fitness level of athletes, as well as patients with cardiopulmonary disease.<ref>{{Cite journal | last = Albouaini | first = Khaled | last2 = Egred | first2 = Mohaned | last3 = Alahmar | first3=Albert | last4 = Wright | first4=David Justin | date = Nov 2007 | title = Cardiopulmonary exercise testing and its application|url=https://www.ncbi.nlm.nih.gov/pubmed/17989266|journal=Postgraduate Medical Journal|volume=83|issue=985|pages=675–682|doi=10.1136/hrt.2007.121558|issn=1469-0756|pmc=2734442|pmid=17989266}}</ref> In these populations, CPET measures are highly reliable and reproducible.<ref name=":2" /> Exercise physiologists however have noted that ME/CFS patients are unable to reproduce these measurements on consecutive days, despite meeting criteria for maximal effort.<ref name=":4" /> According to a 2015 report by The National Academy of Medicine, “ME/CFS patients have significantly lower results on CPET 2 than on CPET 1 on one or more of the following parameters: VO2max, VO2 at ventilatory threshold and maximal workload or workload at ventilatory threshold.”<ref name=":5">{{Cite book | url =http://www.ncbi.nlm.nih.gov/books/NBK274235/ | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | last =Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | last2 = Board on the Health of Select Populations | last3 = Institute of Medicine | date = 2015 | publisher=National Academies Press (US)|isbn=9780309316897|series=The National Academies Collection: Reports funded by National Institutes of Health|location=Washington (DC)|pmid=25695122}}</ref>

Specifically, VO2Max is the true maximal oxygen consumption of a participant, VO2Peak is the recorded maximal oxygen consumption of a participant and VO2 at ventilatory threshold is the oxygen consumption at the first key threshold (VT or VT1), otherwise known as the gas exchange threshold (GET). This threshold is the point at which carbon dioxide output (VCO2) and oxygen consumption no longer increase linearly, which occurs at 40-75% of VO2Max, depending on the fitness and health of the participants. The VT1 is commonly determined using the V-slope method, which notes the point of non linearity when VO2 is plotted against VCO2. The VT1 can also be indicated using the ventilatory equivalent method, plotting VE/VO2 and VE/VCO2 on the same graph and noting the point where VE/VO2 increases significantly, while VE/VCO2 remains flat (where VE is minute ventilation, which is the total amount of gas inhaled or exhaled from the lungs per minute). While the VT1 is primarily determined by peripheral metabolic factors, it is not synonymous with the lactate threshold which is the point at which lactate starts to accumulate significantly in the blood. The lactate threshold is not only dependent on lactate/pyruvate equilibrium inside the muscle cells, but the kinetics of lactate transport into and out of cells. Nor is VT1 synonymous with the onset of acidosis which is additionally affected by pH buffering within the cell and the circulatory system. It is also important to point out that this gas exchange threshold is not caused by shortness of breath, nor hyperventilation, since neither hypocapnia nor hypercapnia occur at this threshold. There is however, a second ventilatory threshold (VT2) otherwise known as the respiratory compensation point (RCP), and typically occurs at 85-90% of VO2Max. This respiratory compensation occurs when a significant reduction in blood or cerebrospinal fluid pH activates chemoreceptors, which stimulate the respiratory centre of the brain, leading to compensatory hyperventilation to help restore the pH balance.

According to researchers in the field, the abnormal results of ME/CFS patients on the 2-day CPET reflect post-exertional malaise (PEM), a marked symptom exacerbation after exercise thought to be characteristic of this condition.<ref name=":1" /> The 2015 report by National Academy of medicine indicated that the 2-day CPET protocol can be used as an objective indicator that physical exertion decreases subsequent function in patients with ME/CFS, for example in obtaining social security disability.<ref name=":5" /> The 2-day CPET protocol however is not required in making the diagnosis of ME/CFS. Some have expressed concern that exercise tests may significantly worsen the condition of ME/CFS patients.<ref name=":5" /><ref>{{Cite journal | last =Nijs | first=J. | last2 = Van Oosterwijck | first2 = J. | last3 = Meeus | first3=M. | last4 = Lambrecht | first4 = L. | last5 = Metzger | first5 = K. | last6 = Frémont | first6 = M. | last7 = Paul | first7 = L. | date = Apr 2010 | title = Unravelling the nature of postexertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome: the role of elastase, complement C4a and interleukin-1beta|url=https://www.ncbi.nlm.nih.gov/pubmed/20433584|journal=Journal of Internal Medicine|volume=267|issue=4|pages=418–435|doi=10.1111/j.1365-2796.2009.02178.x|issn=1365-2796|pmid=20433584}}</ref><ref>{{Cite journal | last = VanNess | first=J. Mark | last2 = Stevens | first2 = Staci R. | last3 = Bateman | first3 = Lucinda | last4 = Stiles | first4=Travis L. | last5 = Snell | first5 = Christopher R. | date = Feb 2010 | title = Postexertional malaise in women with chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/20095909|journal=Journal of Women's Health (2002)|volume=19|issue=2|pages=239–244|doi=10.1089/jwh.2009.1507|issn=1931-843X|pmid=20095909}}</ref><ref name=":0" />

==Evidence==
[[Mark VanNess]], [[Christopher Snell]] and [[Staci Stevens]] of the University of the Pacific, Stockton, CA, were the first to study the two-day CPET procedure in patients with ME/CFS. In a 2007 study published in the [[Journal of Chronic Fatigue Syndrome]], they compared six ME/CFS patients with six controls. At the first CPET there were no major differences between the two groups. At the second CPET however, ME/CFS patients reached significantly lower peak [[oxygen]] consumption (VO2Peak) and oxygen consumption at aerobic threshold.<ref name=":4">{{Cite journal | last = Vanness | first=J. Mark | last2 = Snell | first2 = Christopher R. | last3 = Stevens | first3=Staci R. | date = Jan 2007 | title = Diminished Cardiopulmonary Capacity During Post-Exertional Malaise|url=https://www.tandfonline.com/doi/abs/10.1300/J092v14n02_07|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=14|issue=2 | pages = 77–85|doi=10.1300/j092v14n02_07|issn=1057-3321}}</ref>

In 2010, a Dutch research group including Ruud Vermeulen and [[Frans Visser]] used the 2-day CPET in a study with 15 female ME/CFS and 15 healthy controls. Patients reached the aerobic threshold and the maximal exercise at much lower oxygen consumption than controls, an effect that was magnified during the second-day exercise test. Since levels of creatine kinase in the blood and oxidative phosphorylation in mononuclear cells were normal in patients before and after exercise, Vermeulen et al. speculated that the lowered anaerobic threshold was not so much a result of [[mitochondrion|mitochondrial]] insufficiency, but of impaired oxygen transport to the [[Muscle|muscles]].<ref name=":7">{{Cite journal | last = Vermeulen | first = Ruud C. W. | last2 = Kurk | first2 = Ruud M. | last3 = Visser | first3=Frans C. | last4 = Sluiter | first4=Wim | last5 = Scholte | first5 = Hans R. | date = 2010-10-11 | title = Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity|url=https://www.ncbi.nlm.nih.gov/pubmed/20937116|journal=Journal of Translational Medicine|volume=8 | pages = 93|doi=10.1186/1479-5876-8-93|issn=1479-5876|pmc=2964609|pmid=20937116}}</ref>

In 2013, [[Christopher Snell|Snell]], [[Staci Stevens|Stevens]] and [[Mark VanNess|VanNess]] tested the 2-day CPET procedure in a larger sample of 51 ME/CFS patients and 10 healthy controls. Once again, there were no sufficient differences between the groups at the first CPET. During the exercise test on the second day however, ME/CFS patients showed much lower oxygen consumption and workload at peak exercise and at aerobic threshold. Group differences were not due to lack of effort since most participants attained the ventilatory threshold and achieved a respiratory exchange ratio of greater than or equal to 1.1.<ref name=":0">{{Cite journal | last =Snell | first = C. R. | last2 = Stevens | first2 = S.R. | last3 = Davenport | first3=T.E. | last4 = Van Ness | first4=J.M. | date=2013-06-27 | title = Discriminative Validity of Metabolic and Workload Measurements for Identifying People With Chronic Fatigue Syndrome|url=https://academic.oup.com/ptj/article/93/11/1484/2735315|journal=Physical Therapy|language=en|volume=93|issue=11|pages=1484–1492|doi=10.2522/ptj.20110368|issn=0031-9023}}</ref>

In 2014, the research group of [[Betsy Keller]] used the 2-day CPET protocol in a study involving 22 ME/CVS patient. A decline on several physiological measures was found (see table), while the respiratory exchange ratio indicated maximum efforts by participants during both exercise tests.<ref name=":1">{{Cite journal | last = Keller | first=Betsy A. | last2 = Pryor | first2=John Luke | last3 = Giloteaux | first3 = Ludovic | date = 2014-04-23 | title = Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO₂peak indicates functional impairment|url=https://www.ncbi.nlm.nih.gov/pubmed/24755065|journal=Journal of Translational Medicine|volume=12|pages=104|doi=10.1186/1479-5876-12-104|issn=1479-5876|pmc=4004422|pmid=24755065}}</ref>

This group followed this research up with a study of a single pair of monozygotic twins in 2016.<ref name=":8">{{Cite journal | title = A Pair of Identical Twins Discordant for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Differ in Physiological Parameters and Gut Microbiome Composition|url=http://www.amjcaserep.com/abstract/index/idArt/900314|journal=American Journal of Case Reports | date = 2016-10-10|issn=1941-5923|pmc = 5058431|pmid=27721367 | pages = 720–729|volume=17|doi=10.12659/AJCR.900314|language=en | first = Ludovic | last =Giloteaux | first2 = Maureen R. | last2 = Hanson | first3=Betsy A. | last3 = Keller}}</ref>
{| class="wikitable"
! colspan="8" |Physiological changes between first and second exercise test during 2-day CPET procedure in patients with ME/CFS (bold indicates statistical significance)
|-
|
|Number of ME/CFS patients
|VO2 peak
|VO2 at VT
|Workload peak
|Workload at VT
|HR peak
|O2pulse at VT
|-
|VanNess et al. 2007.<ref name=":4" />
|6
|'''-22%'''
|'''-26%'''
|?
|?
|?
|?
|-
|Vermeulen et al. 2010. <ref name=":7" />
|15
|'''-6.3%'''
|'''-7.0%'''
|'''-5.3%'''
|'''-7.0%'''
|<nowiki>-1.9%</nowiki>
|'''-8.8%'''
|-
|Snell et al. 2013.<ref name=":0" />
|51
| -5%
|'''-10.8%'''
|'''-7.2%'''
|'''-55.2%'''
|?
|?
|-
|Keller et al. 2014.<ref name=":1" />
|22
|'''-13.8%'''
|'''-15.8%'''
|'''-12.5%'''
|'''-21.3%'''
|'''-5.9%'''
|'''-12.6%'''
|-
|Giloteaux et al. 2016.<ref name=":8" />
|1 (monozygotic twin)
|0%
| -13.4%
|0%
| -25%
| +7.4%
| -19% (calculated)
|-
|Hodges et al. 2018.<ref name=":3" />
|10
|<nowiki>+5.3%</nowiki>
|<nowiki>+6.1%</nowiki>
|<nowiki>-6.7%</nowiki>
|'''-11.4%'''
|<nowiki>-0.6%</nowiki>
| +7% (calculated)
|-
|Nelson et al. 2019.<ref name=":9" />
|16
| +0.4%
| -3.1%
| -1.2%
|'''-17.4%'''
| -0.5%
| +2% (calculated)
|-
|Lien et al. 2019.<ref name=":10" /> (numerical estimates)

|18
| -5%
| -6%
| -2%
|'''-7%'''
| +1.5%
|?
|-
|van Campen 2020.A<ref name=":11" /> (males)
|25
|'''-10%'''
|'''-22%'''
|'''-10%'''
|'''-30%'''
|'''-5%'''
| -16% (calculated)
|-
|van Campen 2020.B<ref name=":12" /> (females)
|31 ("mild" cases)
|'''-6%'''
|'''-21%'''
|'''-10%'''
|'''-26%'''
| -3%
|?
|-
|van Campen 2020.B<ref name=":12" /> (females)
|31 ("moderate" cases)
|'''-11%'''
|'''-21%'''
|'''-16%'''
|'''-31%'''
| -6%
|?
|-
|van Campen 2020.B<ref name=":12" /> (females)
|20 ("severe" cases)
|'''-12%'''
|'''-19%'''
|'''-19%'''
|'''-33%'''
| -7%
|?
|-
|Davenport 2020.<ref name=":13" />
|51
| -5%
| -10%
| -9%
|'''-11%'''
| -3%
| -7% (calculated)
|-
|van Campen 2021.<ref name=":6" /> (males)
|26
|'''-12%'''
|'''-27%'''
|'''-10%'''
|'''-27%'''
| -7%
| -17% (calculated)
|-
|van Campen 2021.<ref name=":14" /> (females)
|50
|'''-10%'''
|'''-23%'''
|'''-11%'''
|'''-30%'''
| -4%
| -15% (calculated)
|-
|Keller 2024.<ref>{{Cite journal|title=Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment considerations|date=2024-07-05|url=https://doi.org/10.1186/s12967-024-05410-5|journal=Journal of Translational Medicine|volume=22|issue=1|pages=627|last=Keller|first=Betsy|last2=Receno|first2=Candace N.|last3=Franconi|first3=Carl J.|last4=Harenberg|first4=Sebastian|last5=Stevens|first5=Jared|last6=Mao|first6=Xiangling|last7=Stevens|first7=Staci R.|last8=Moore|first8=Geoff|last9=Levine|first9=Susan|last10=Chia|first10=John|last11=Shungu|first11=Dikoma|doi=10.1186/s12967-024-05410-5|pmc=PMC11229500|pmid=38965566|issn=1479-5876}}</ref>
|84
|'''-5.3%'''(calculated)
|'''-6.8%'''(calculated)
|'''-5.5%'''
(calculated)
|'''-9.4%'''(calculated)
|
|
|}
In 2017, a research team form [[New Zealand]] compared the physiological responses during a 2-day CPET, in ten patients with ME/CFS, seven patients with [[Multiple sclerosis|Multiple Sclerosis]] (MS) and seventeen healthy controls. Curiously peak oxygen increased at the second exercise test in ME/CFS patients, but there was a significant reduction noticeable in workload at aerobic threshold, a decline that was not seen in MS-patients or healthy controls. According to the authors: <blockquote>“differences between MS and CFS/ME responses only became evident after a second maximal exercise test, thus suggesting that a repeated protocol is required to not only distinguish CFS/ME from HC, but also from other fatigue-related conditions, who may not suffer from post-exertional malaise and have a differing delayed fatigue profile.”<ref name=":3">{{Cite journal | last =Hodges | first = L. D. | last2 = Nielsen | first2=T. | last3 = Baken | first3= D. | date = Jul 2018 | title = Physiological measures in participants with chronic fatigue syndrome, multiple sclerosis and healthy controls following repeated exercise: a pilot study|url=https://www.ncbi.nlm.nih.gov/pubmed/28782878|journal=Clinical Physiology and Functional Imaging|volume=38|issue=4|pages=639–644|doi=10.1111/cpf.12460|issn=1475-097X|pmid=28782878}}</ref></blockquote>In 2019 the 2-day CPET procedure was tested by an Australian research team of Nelson and colleagues. They found a significant larger reduction in workload at the ventilatory threshold in patients with ME/CFS compared to healthy controls. A percentage change of −6.3% to −9.8% provided good sensitivity and specificity, indicating this test has the potential to become a biomarker for ME/CFS. However, the sample size of this study was small (16 ME/CFS patients), the control group consisted only of healthy persons (instead of patients with other chronic illnesses) and no significant difference was found in VO2 at the ventilatory threshold.<ref name=":9">{{Cite journal | last =Nelson | first = Maximillian J. | last2 = Buckley | first2 = Jonathan D. | last3 = Thomson | first3=Rebecca L. | last4 = Clark | first4 = Daniel | last5 = Kwiatek | first5 = Richard | last6 = Davison | first6 = Kade | date = 2019-03-14 | title = Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://doi.org/10.1186/s12967-019-1836-0|journal=Journal of Translational Medicine|volume=17|issue=1 | pages = 80|doi=10.1186/s12967-019-1836-0|issn=1479-5876|pmc = 6417168|pmid=30871578}}</ref>

A Norwegian study published in 2019 also reported a significant larger reduction in workload at the ventilatory threshold in 18 patients with ME/CFS compared to healthy controls, although this was not the case for peak values or VO2 measurement at the ventilatory threshold. The authors also measured arterial lactate concentrations, every 30 seconds during the exercise tests. Lactate was higher per power output per kg in patients than controls and the differences increased significantly at the second exercise test. In the healthy controls lactate concentration at the ventilatory threshold decreased while this was not the case in ME/CFS patients, suggesting a problem in lactate clearance ability.<ref name=":10">{{Cite journal | last =Lien | first = Katarina | last2 = Johansen | first2=Bjørn | last3 = Veierød | first3=Marit B. | last4 = Haslestad | first4=Annicke S. | last5 = Bøhn | first5 = Siv K. | last6 = Melsom | first6 = Morten N. | last7 = Kardel | first7 = Kristin R. | last8 = Iversen | first8 = Per O. | date = 2019 | title=Abnormal blood lactate accumulation during repeated exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome|url=https://physoc.onlinelibrary.wiley.com/doi/abs/10.14814/phy2.14138|journal=Physiological Reports|language=en|volume=7|issue=11| pages = e14138|doi=10.14814/phy2.14138|issn=2051-817X}}</ref>

Researchers from the Workwell Foundation published in 2019, a case series of six women, who underwent the 2-day CPET. This study compared two healthy participants, one active, the other sedentary, two ME/CFS patients, one high functioning with high VO2peak, another with low VO2Peak, with a patient suffering from [[HIV/AIDS|human immunodeficiency virus]] (HIV) and another suffering from [[Multiple sclerosis|MS]].<ref>{{Cite journal | last =Larson | first = Benjamin | last2 = Davenport | first2=Todd E. | last3 = Stevens | first3=Staci R. | last4 = Stevens | first4=Jared | last5 = Van Ness | first5 = J. Mark | last6 = Snell | first6 = Christopher R. | date = Oct 2019 | title = Reproducibility of Measurements Obtained During Cardiopulmonary Exercise Testing in Individuals With Fatiguing Health Conditions: A Case Series|url=http://insights.ovid.com/crossref?an=01823246-201910000-00004|journal=Cardiopulmonary Physical Therapy Journal|language=en|volume=30|issue=4|pages=145–152|doi=10.1097/CPT.0000000000000100|issn=1541-7891|pmc=|pmid= | author-link = | author-link2 = Todd Davenport|access-date= | author-link3 = Staci Stevens | authorlink4 = | authorlink5 = Mark VanNess | authorlink6 = Christopher Snell|via=}}</ref> The healthy participants and the MS patient reproduced or improved their exercise parameters, namely VO2, workload, heart-rate and minute ventilation at both the ventilatory threshold and peak exercise. The HIV patient reproduced all of these findings except peak workload and peak minute ventilation. The ME/CFS patients were unable to reproduce VO2, workload, heart rate or minute ventilation at the ventilatory threshold. These results continue to suggest that the inability to reproduce workload at the ventilatory threshold is specific to ME/CFS patients, but patients with other fatiguing conditions will need to be tested to confirm this. This study was followed up in 2020 with 51 patients and 10 controls, focusing on additional statistical analysis and discussing the meaning of test-retest reliability in the context of ME/CFS. The main positive finding was a significant group*test (difference) in work rate at the ventilatory threshold. <ref name=":13">{{Cite journal | last =Davenport | first=Todd E. | last2 = Stevens | first2 = Staci R. | last3 = Stevens | first3=M. A. Jared | last4 = Snell | first4 = Christopher R. | last5 = Van Ness | first5 = J. Mark | date = 2020-06-16 | title = Properties of measurements obtained during cardiopulmonary exercise testing in individuals with myalgic encephalomyelitis/chronic fatigue syndrome|url=https://www.medra.org/servlet/aliasResolver?alias=iospress&doi=10.3233/WOR-203170 | journal = Work | pages=1–10|doi=10.3233/WOR-203170}}</ref>

In 2020, researchers from Stichting Cardio Zorg, a cardiology clinic in the Netherlands published two studies of clinical 2-day CPET results for ME/CFS patients with exercise intolerance. The first study consisted of male patients, to see whether the results from previous studies which had predominantly female patients would be replicated.<ref name=":11">{{Cite journal | last =van Campen | first = C. (Linda) M. C. | last2 = Rowe | first2 = Peter C. | last3 = Visser | first3=Frans C. | date = 2020 | title=Validity of 2-Day Cardiopulmonary Exercise Testing in Male Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.scirp.org/journal/doi.aspx?doi=10.4236/ape.2020.101007|journal=Advances in Physical Education|volume=10|issue=01|pages=68–80|doi=10.4236/ape.2020.101007|issn=2164-0386}}</ref> A second study focused on female patients with differing severity, which were subgrouped according to: “Symptom severity impact must result in a 50% or greater reduction in a patient’s premorbid activity level for a diagnosis of ME. Mild: approximately 50% reduction in activity, moderate: mostly housebound, severe: mostly bedbound and very severe: bedbound and dependent on help for physical functions”.<ref name=":12">{{Cite journal | last =van Campen | first = C (Linda) MC | last2 = Rowe | first2 = Peter C. | last3 = Visser | first3=Frans C. | date = 2020-06-30 | title = Two-Day Cardiopulmonary Exercise Testing in Females with a Severe Grade of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Comparison with Patients with Mild and Moderate Disease|url=https://www.mdpi.com/2227-9032/8/3/192|journal=Healthcare|language=en|volume=8|issue=3|pages=192|doi=10.3390/healthcare8030192|issn=2227-9032}}</ref> This research was followed up in 2021 with a retrospective clinical comparison between 26 male idiopathic chronic fatigue (ICF) cases who did not suffer from PEM and 25 male ME/CFS patients who satisfied the 2011 ME International Consensus Criteria and the 1994 Center for Disease Control criteria for CFS. <ref name=":6">{{Cite journal | last =van Campen | first = C. (Linda) M. C. | last2 = Visser | first2=Frans C. | date = Jun 2021 | title = Comparing Idiopathic Chronic Fatigue and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Males: Response to Two-Day Cardiopulmonary Exercise Testing Protocol|url=https://www.mdpi.com/2227-9032/9/6/683|journal=Healthcare|language=en|volume=9|issue=6|pages=683|doi=10.3390/healthcare9060683|pmc=|pmid=|quote= | author-link = Linda van Campen | authorlink2 = Frans Visser|access-date=|via=}}</ref> Notably, most ME/CFS patients had a decline in VO2 and workload performance at peak and the ventilatory threshold on the second day, compared to all idiopathic chronic fatigue cases who were able to match or exceed their first day performance. The authors concluded that this decline in performance on the second day was disease-specific.<ref name=":6" /> A related comparison was performed for female patients with similar results.<ref name=":14">{{Cite journal | last =van Campen | first = C. (Linda) M. C. | last2 = Visser | first2=Frans C. | date = Jun 2021 | title = Female Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or Idiopathic Chronic Fatigue: Comparison of Responses to a Two-Day Cardiopulmonary Exercise Testing Protocol|url=https://www.mdpi.com/2227-9032/9/6/682|journal=Healthcare|language=en|volume=9|issue=6|pages=682|doi=10.3390/healthcare9060682|pmc=|pmid=|quote= | author-link = Linda van Campen | authorlink2 = Frans Visser|access-date=|via=}}</ref> However there were several ICF patients that also had a reduction in peak workload and workload at the ventilatory threshold, despite the overall trend for an increase for ICF patients and a decrease for ME/CFS patients.

Unpublished studies have reported negative results for the repeated CPET procedure. In her thesis, Tessa-Maree Nielsen<ref>Nielsen TM. [https://mro.massey.ac.nz/bitstream/handle/10179/14653/02_whole.pdf?sequence=2&isAllowed=y The Timeline of Post Exertional Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 2018.]</ref> at the Massey University, [[New Zealand]], performed the second exercise test 48 hours and 72 hours later, instead of the usual 24 hours. The study did not find significant reductions of workload at the ventilatory threshold in ME/CFS patients compared to controls. The eight ME/CFS patients in the 72 hours group had a workload at ventilatory threshold that was slightly higher instead of lower than during the first test. In a 2018 presentation,<ref>[https://www.youtube.com/watch?v=xpyz9K62Izg Presentation Ruud Vermeulen (03-06-2018). Minute 34.00.]</ref> Ruud Vermeulen reported to have data on approximately 500 ME/CFS patients who performed the repeated CPET procedure. He stated the test on the second day did not show any difference in VO2max compared to the first day, as shown in the graphs he presented.

Two-Day CPET studies have also considered other clinical groups, including [[Gulf War Illness|Gulf-War-Syndrome]]<ref>{{Cite journal | last =Lindheimer | first=Jacob B. | last2 = Alexander | first2=Thomas | last3 = Qian | first3=Wei | last4 = Klein‐Adams | first4=Jacquelyn C. | last5 = Lange | first5 = Gudrun | last6 = H. Natelson | first6 = Benjamin | last7 = Cook | first7 = Dane B. | last8 = Hill | first8 = Helene Z. | last9 = Falvo | first9 = Michael J. | date = Sep 2020 | title = An analysis of 2‐day cardiopulmonary exercise testing to assess unexplained fatigue|url=https://onlinelibrary.wiley.com/doi/abs/10.14814/phy2.14564|journal=Physiological Reports|language=en|volume=8|issue=17|doi=10.14814/phy2.14564|pmid=32889791|pages=|quote=|access-date= | author-link3 = | authorlink4 = | authorlink5 = Gudrun Lange | authorlink6 = Benjamin Natelson|via=|pmc= | authorlink7 = Dane Cook}}</ref> and Sarcoidosis.<ref>{{Cite journal | last =Braam | first = A.W.E. | last2 = de Haan | first2 = S.N. | last3 = Vorselaars | first3=A.D.M. | last4 = Rijkers | first4=G.T. | last5 = Grutters | first5 = J.C. | last6 = van den Elshout | first6 = F.J.J. | last7 = Korenromp | first7 = I.H.E. | date = Oct 2013 | title = Influence of repeated maximal exercise testing on biomarkers and fatigue in sarcoidosis|url=https://linkinghub.elsevier.com/retrieve/pii/S0889159113001967|journal=Brain, Behavior, and Immunity|language=en|volume=33|pages=57–64|doi=10.1016/j.bbi.2013.05.006|issue=|pmc=|pmid=|quote=|access-date=|via=}}</ref> The study of Gulf-War-Syndrome patients did not reveal any significant group by time effects and in particular, no time effects at VT1. The study of Sarcoidosis patients did not find any group by time effects, however they focused on peak performance and ignored differences in performance at sub-maximal thresholds such as VT1. In addition, the study of Sarcoidosis patients did find an exercise effect on several biomarkers, however changes in these markers were not related to self-reported fatigue.
A 2023 conference abstract examined preliminary data from 2-day CPETs of LongCOVID patients <ref>{{cite journal |last1= Stringer | first1 = William |last2= Heffernan |first2= Carly |date= Oct 2023 |title=UTILITY OF 2-DAY CARDIOPULMONARY EXERCISE TESTING PROTOCOL IN LONG-HAUL COVID (LHC) PATIENTS: PRELIMINARY DATA |url=https://journal.chestnet.org/article/S0012-3692(23)04762-1/fulltext |journal=Chest|doi=10.1016/j.chest.2023.07.3724}}</ref> and found there was no difference in peak workrate and peak VO2 relative to day one. However the key finding across all ME/CFS studies is a reduction in workrate at VT1, and it is uncertain if that study analysed such data.

== Use as a Biomarker ==
[[Christopher Snell|Snell]] et al. suggested 2-day CPET could be used "diagnostically as an objective indicator of an abnormal postexertion response and possibly even a [[Diagnostic biomarker|biomarker]] for the condition."<ref name=":0" /> Using the data from the two exercise tests, their research team was able to correctly classify 95% of the total sample, as a patient or healthy control.

== Criticism ==
While a unique reduction in physiological capacity was observed in ME/CFS by several studies and different research groups, sample sizes were rather small and disagreement exists on which physiological measure accurately displayed ME/CFS patients’ [[Post-exertional malaise|abnormal exertional response]].<ref name=":1" />

Another objection to the 2-day CPET as a biomarker for ME/CFS was raised by Snell et al themselves. They suggested it might be unethical<ref name=":0" /> to use this method to detect ME/CFS patients since many of these patients might suffer relapse as a result of exercise testing. In their 2010 study, 60% of ME/CFS patients reported that it took them more than 5 days to recover from a single (maximal) CPET. It is therefore possible that in some ME/CFS patients a 2-day CPET might cause a long-lasting relapse. Science-reporter and ME/CFS patient [[Simon McGrath]] for example wrote: “You couldn’t pay me enough money to take even one max test. My last relapse, which took me nearly 2 years to get over, happened after way less than maximal [[exertion]] – a 2-day test is not for everyone."<ref>{{Cite news | url=https://www.healthrising.org/blog/2014/05/20/declining-production-exercise-study-reveal-broad-decline-energy-output-chronic-fatigue-syndrome/ | title = Declining Production: Exercise Study Reveals Broad Declines in Energy Output in Chronic Fatigue Syndrome - Health Rising | date = 2014-05-20|work=Health Rising|access-date=2018-08-17|language=en-US}}</ref>

Others have noted that the CPET-procedure is not very practical. It cannot be used in patients with severe ME/CFS (thus excluding these patients from study) and because of cost and expertise, it may not be available to most clinicians.<ref>https://www.commondataelements.ninds.nih.gov/Doc/MECFS/03_Fatigue_Subgroup_CDE_Draft_Recommendations.pdf</ref> CPET for ME/CFS is usually not covered by insurance and can cost hundreds of dollars.<ref>{{Cite journal | last =Cotler | first=Joseph | last2 = Holtzman | first2=Carly | last3 = Dudun | first3=Catherine | last4 = Jason | first4 = Leonard A. | date = 2018-09-11 | title = A Brief Questionnaire to Assess Post-Exertional Malaise|url=https://www.ncbi.nlm.nih.gov/pubmed/30208578|journal=Diagnostics (Basel, Switzerland)|volume=8|issue=3|doi=10.3390/diagnostics8030066|issn=2075-4418|pmid=30208578}}</ref> For these reasons PEM is commonly assessed using self-reporting questionnaires.

[[Brian Vastag]] was able to prove his PEM was a severe symptom causing disability with CPET, winning his long term disability (LTD) claim.<ref name=":02">{{Cite web|url=https://www.meaction.net/2018/06/04/victory-for-me-disability-claim-court-upholds-plaintiffs-lawsuit-after-being-denied-disability/ | title = Victory for ME Disability Claim - U.S. Court Upholds Plaintiff's Lawsuit After Being Denied Disability | last = Tillman | first = Adriane | author-link =| date = 2018-06-04 | website = #MEAction|language=en-US|archive-url=|archive-date=|url-status=|access-date=2019-02-02}}</ref>

==Cost and availability==
*[[Workwell Foundation]] (United States, CA)
*[[Betsy Keller]] at Ithaca College (United States, NY) Cost is $2200. Because they are based in a college setting (not healthcare setting), they cannot process insurance (including Medicare or Medicaid), so the patient would need to work directly with their insurer about reimbursement. (private email)
*[[Laura Black]] at Hunter-Hopkins Center, Charlotte, NC
*[[Open Medicine Institute]] Clinic
*[http://physiologic.com.au/ Physiologic 334 Scottsdale Drive, Robina, Gold Coast, Australia]
*[https://www.s4me.info/threads/uk-locations-that-offer-cpet-vo2max-testing.4999/ Many UK universities] offer standard CPETs which can be adapted for patients with ME.

==Talks and interviews==
*2013, [https://www.youtube.com/watch?v=fHulHdMPAd4 CPET Presentation by Dr. Christopher Snell, Part I][https://www.youtube.com/watch?v=piUDax7I-Ek CPET Presentation by Dr. Christopher Snell, Part II]
*2014, [https://www.youtube.com/watch?v=q_cnva7zyKM&feature=youtu.be Mark VanNess 'Exercise and ME/CFS' at Bristol Watershed. Part One]

==See also==

*[[Betsy Keller]]
*[[Christopher Snell]]
*[[Exercise]]
*[[Mark VanNess]]
*[[Post-exertional malaise]]
*[[Staci Stevens]]
==Learn more==

*[http://www.workwellfoundation.org/testing-for-disability/ The Workwell Foundation: Testing for Disability]
*2007, [http://www.name-us.org/MECFSExplainPages/2007CiccolellaLegalStressTest.pdf Legal and Scientific Considerations of the Exercise Stress Test]
*2013, [http://www.cortjohnson.org/blog/2013/07/30/busted-exercise-study-finds-energy-production-system-is-broken-in-chronic-fatigue-syndrome/ Busted! Exercise Study Finds Energy Production System is Broken in Chronic Fatigue Syndrome]
*2013, [http://phoenixrising.me/archives/17902/ Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity]
*2018, [https://www.meaction.net/2018/06/04/victory-for-me-disability-claim-court-upholds-plaintiffs-lawsuit-after-being-denied-disability/ Victory For ME Disability Claim – U.S. Court Upholds Plaintiff's Lawsuit After Being Denied Disability]<ref name=":02" />
*2019, [https://www.healthrising.org/blog/2019/01/17/decoding-2-day-cpet-chronic-fatigue-syndrome/ Decoding the 2-day Cardiopulmonary Exercise Test (CPET) in Chronic Fatigue Syndrome (ME/CFS)] by C. Christian

==References==
{{reflist}}
[[Category:Medical tests]]
[[Category:Cardiology]]

List of ME/CFS studies controlling for deconditioning

2024-07-09T12:21:04Z

Forestglip:/* Studies */ added study

Some major potential confounding factors inherent in research on ME/CFS patients include physical deconditioning and social isolation, but these are often not controlled for. A biological abnormality may be present because of a fundamental ME pathway, or it may be an effect of little to no exercise, and would be seen in any sedentary population. This page lists biological marker studies which attempt to control for deconditioning in any observed differences between groups, for example by including a second control group of severely deconditioned people. It is important to note that deconditioning and social isolation are consequences and not causes of ME/CFS.<ref>{{Cite journal|title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management|date=November 2021|url=https://doi.org/10.1016/j.mayocp.2021.07.004|journal=Mayo Clinic Proceedings|volume=96|issue=11|pages=2861–2878|last=Bateman|first=Lucinda|last2=Bested|first2=Alison C.|last3=Bonilla|first3=Hector F.|last4=Chheda|first4=Bela V.|last5=Chu|first5=Lily|last6=Curtin|first6=Jennifer M.|last7=Dempsey|first7=Tania T.|last8=Dimmock|first8=Mary E.|last9=Dowell|first9=Theresa G.|last10=Felsenstein|first10=Donna|last11=Kaufman|first11=David L.|doi=10.1016/j.mayocp.2021.07.004|issn=0025-6196}}</ref>

== Studies ==

* Understanding Muscle Dysfunction in Chronic Fatigue Syndrome, 2016<ref>{{Cite journal|title=Understanding Muscle Dysfunction in Chronic Fatigue Syndrome|date=2016|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779819/|journal=Journal of Aging Research|volume=2016|pages=2497348|last=Rutherford|first=Gina|last2=Manning|first2=Philip|last3=Newton|first3=Julia L.|doi=10.1155/2016/2497348|pmc=4779819|pmid=26998359|issn=2090-2204}}</ref>
** This paper describes two studies that tested muscle acidosis after repeat exercise, one in ME/CFS<ref>{{Cite journal|title=Effects of H₂O₂ on electrical membrane properties of skeletal myotubes|date=Jan 15, 2011|url=https://pubmed.ncbi.nlm.nih.gov/21109001/|journal=Free Radical Biology & Medicine|volume=50|issue=2|pages=337–344|last=Luin|first=Elisa|last2=Giniatullin|first2=Rashid|last3=Sciancalepore|first3=Marina|doi=10.1016/j.freeradbiomed.2010.11.015|pmid=21109001|issn=1873-4596}}</ref> and the other in primary biliary cirrhosis (PBC)<ref name=":0">{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=Jul 2010|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref>. They say that PBC causes a similar level of fatigue to ME/CFS.<ref>{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=Jul 2010|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref> The studies showed that both groups showed abnormally high intramuscular acidosis after exercise. But in contrast, the level of acidosis decreases with repeat exercise in PBC, but not in ME/CFS.
* [[Buspirone challenge test]]
** When buspirone is given to people with ME/CFS, the resulting increase in prolactin is greater than in healthy controls. Studies have also shown a similar abnormally high response in other conditions, such as dyspepsia and social anxiety disorder. A similar response to healthy controls was seen in people with '''depression''' or mania. The opposite response, lower prolactin, was seen in those with schizophrenia.
* Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients, 2023, Glass et al<ref>{{Cite journal|title=Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients|date=2023|url=https://www.mdpi.com/1422-0067/24/4/3685|journal=International Journal of Molecular Sciences|volume=24|issue=4|pages=3685|last=Glass|first=Katherine A.|last2=Germain|first2=Arnaud|last3=Huang|first3=Yuhsin V.|last4=Hanson|first4=Maureen R.|language=en|doi=10.3390/ijms24043685|pmc=9958671|pmid=36835097|issn=1422-0067}}</ref>
*Dysregulation of extracellular vesicle protein cargo in female myalgic encephalomyelitis/chronic fatigue syndrome cases and sedentary controls in response to maximal exercise, 2024, Giloteaux et al<ref>{{Cite journal |last=Giloteaux |first=Ludovic |last2=Glass |first2=Katherine A. |last3=Germain |first3=Arnaud |last4=Franconi |first4=Carl J. |last5=Zhang |first5=Sheng |last6=Hanson |first6=Maureen R. |date=Jan 2024 |title=Dysregulation of extracellular vesicle protein cargo in female myalgic encephalomyelitis/chronic fatigue syndrome cases and sedentary controls in response to maximal exercise |url=https://isevjournals.onlinelibrary.wiley.com/doi/10.1002/jev2.12403 |journal=Journal of Extracellular Vesicles |language=en |volume=13 |issue=1 |doi=10.1002/jev2.12403 |issn=2001-3078 |pmc=PMC10764978 |pmid=38173127}}</ref>
*Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment considerations, 2024, Keller et al<ref>{{Cite journal|title=Cardiopulmonary and metabolic responses during a 2-day CPET in myalgic encephalomyelitis/chronic fatigue syndrome: translating reduced oxygen consumption to impairment status to treatment considerations|date=2024-07-05|url=https://doi.org/10.1186/s12967-024-05410-5|journal=Journal of Translational Medicine|volume=22|issue=1|pages=627|last=Keller|first=Betsy|last2=Receno|first2=Candace N.|last3=Franconi|first3=Carl J.|last4=Harenberg|first4=Sebastian|last5=Stevens|first5=Jared|last6=Mao|first6=Xiangling|last7=Stevens|first7=Staci R.|last8=Moore|first8=Geoff|last9=Levine|first9=Susan|last10=Chia|first10=John|last11=Shungu|first11=Dikoma|doi=10.1186/s12967-024-05410-5|issn=1479-5876}}</ref>
**

==See also==

==Learn more==


==References==
{{Reflist}}

[[Category:Notable Studies]]
[[Category:Lists]]

List of ME/CFS studies controlling for deconditioning

2024-07-05T12:34:36Z

Forestglip:/* Studies */ fixed formatting, added citation

List of ME/CFS studies controlling for deconditioning

2024-07-05T12:32:33Z

Forestglip:/* Studies */ added study

Talk:List of ME/CFS studies controlling for deconditioning

2024-06-17T18:59:45Z

Forestglip:/* Creating new pages */

== Creating new pages ==

Hi [[User:Forestglip]]. Can you add the relevant subheadings when you start a new page, and make sure you choose a category for it. Example headings can be copied from [[MEpedia:Article_oulines]] but typically See also, Learn more, References and others should be on pages. (The article outlines are for pasting into source view rather than the visual editor.)

I think perhaps this page would be better renamed as "List of studies controlling for..." and put in the [[:Category:Lists]], although there is also [[:Category:Notable studies]]. I am not entirely sure if this page is only for ME/CFS studies and if it's only for exercise studies, or is it only for treatment trials? All clinical trials and research studies are expected to control for multiple other factors (although many of the BPS/CBT/GET ones did not control for key things such as bias in patients questionnaires), so perhaps an altered page name or intro line could clarify this.

Thank you for your work and many edits. ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 21:17, June 12, 2024 (UTC)

===Re: Creating new pages -- [[User:Forestglip|Forestglip]] ([[User talk:Forestglip|talk]]) 18:59, June 17, 2024 (UTC)===

: I think I managed to do all edits you suggested. Let me know if the rewritten paragraph or title need to be edited further. [[User:Forestglip|Forestglip]] ([[User talk:Forestglip|talk]]) 18:59, June 17, 2024 (UTC)

List of ME/CFS studies controlling for deconditioning

2024-06-17T18:58:13Z

Forestglip:clarified introduction and added headings for See also, etc.

Talk:Studies controlling for deconditioning or other confounders

2024-06-17T18:44:41Z

Forestglip:Forestglip moved page Talk:Studies controlling for deconditioning or other confounders to Talk:List of ME/CFS studies controlling for deconditioning:clearer title

#REDIRECT [[Talk:List of ME/CFS studies controlling for deconditioning]]

Talk:List of ME/CFS studies controlling for deconditioning

2024-06-17T18:44:41Z

Forestglip:Forestglip moved page Talk:Studies controlling for deconditioning or other confounders to Talk:List of ME/CFS studies controlling for deconditioning:clearer title

Studies controlling for deconditioning or other confounders

2024-06-17T18:44:39Z

Forestglip:Forestglip moved page Studies controlling for deconditioning or other confounders to List of ME/CFS studies controlling for deconditioning:clearer title

#REDIRECT [[List of ME/CFS studies controlling for deconditioning]]

List of ME/CFS studies controlling for deconditioning

2024-06-17T18:44:34Z

Forestglip:Forestglip moved page Studies controlling for deconditioning or other confounders to List of ME/CFS studies controlling for deconditioning:clearer title

Some major potential confounding factors inherent in research on ME/CFS patients include physical deconditioning and social isolation. This page lists studies which attempt to control for potential confounders, for example by including a second control group of severely deconditioned people in studies observing biological abnormalities. It is important to note that deconditioning and social isolation are consequences and not causes of ME/CFS.<ref>{{Cite journal|title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management|date=November 2021|url=https://doi.org/10.1016/j.mayocp.2021.07.004|journal=Mayo Clinic Proceedings|volume=96|issue=11|pages=2861–2878|last=Bateman|first=Lucinda|last2=Bested|first2=Alison C.|last3=Bonilla|first3=Hector F.|last4=Chheda|first4=Bela V.|last5=Chu|first5=Lily|last6=Curtin|first6=Jennifer M.|last7=Dempsey|first7=Tania T.|last8=Dimmock|first8=Mary E.|last9=Dowell|first9=Theresa G.|last10=Felsenstein|first10=Donna|last11=Kaufman|first11=David L.|doi=10.1016/j.mayocp.2021.07.004|issn=0025-6196}}</ref>

== Studies ==

* Understanding Muscle Dysfunction in Chronic Fatigue Syndrome, 2016<ref>{{Cite journal|title=Understanding Muscle Dysfunction in Chronic Fatigue Syndrome|date=2016|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779819/|journal=Journal of Aging Research|volume=2016|pages=2497348|last=Rutherford|first=Gina|last2=Manning|first2=Philip|last3=Newton|first3=Julia L.|doi=10.1155/2016/2497348|pmc=4779819|pmid=26998359|issn=2090-2204}}</ref>
** This paper describes two studies that tested muscle acidosis after repeat exercise, one in ME/CFS<ref>{{Cite journal|title=Effects of H₂O₂ on electrical membrane properties of skeletal myotubes|date=Jan 15, 2011|url=https://pubmed.ncbi.nlm.nih.gov/21109001/|journal=Free Radical Biology & Medicine|volume=50|issue=2|pages=337–344|last=Luin|first=Elisa|last2=Giniatullin|first2=Rashid|last3=Sciancalepore|first3=Marina|doi=10.1016/j.freeradbiomed.2010.11.015|pmid=21109001|issn=1873-4596}}</ref> and the other in primary biliary cirrhosis (PBC)<ref name=":0">{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=Jul 2010|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref>. They say that PBC causes a similar level of fatigue to ME/CFS.<ref>{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=Jul 2010|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref> The studies showed that both groups showed abnormally high intramuscular acidosis after exercise. But in contrast, the level of acidosis decreases with repeat exercise in PBC, but not in ME/CFS.
* [[Buspirone challenge test]]
** When buspirone is given to people with ME/CFS, the resulting increase in prolactin is greater than in healthy controls. Studies have also shown a similar abnormally high response in other conditions, such as dyspepsia and social anxiety disorder. A similar response to healthy controls was seen in people with depression or mania. The opposite response, lower prolactin, was seen in those with schizophrenia.
*Dysregulation of extracellular vesicle protein cargo in female myalgic encephalomyelitis/chronic fatigue syndrome cases and sedentary controls in response to maximal exercise, Giloteaux et al, Jan 2024<ref>{{Cite journal |last=Giloteaux |first=Ludovic |last2=Glass |first2=Katherine A. |last3=Germain |first3=Arnaud |last4=Franconi |first4=Carl J. |last5=Zhang |first5=Sheng |last6=Hanson |first6=Maureen R. |date=Jan 2024 |title=Dysregulation of extracellular vesicle protein cargo in female myalgic encephalomyelitis/chronic fatigue syndrome cases and sedentary controls in response to maximal exercise |url=https://isevjournals.onlinelibrary.wiley.com/doi/10.1002/jev2.12403 |journal=Journal of Extracellular Vesicles |language=en |volume=13 |issue=1 |doi=10.1002/jev2.12403 |issn=2001-3078 |pmc=PMC10764978 |pmid=38173127}}</ref>

== References ==
{{Reflist}}

Ribose

2024-06-10T00:42:12Z

Forestglip:add citations

'''Ribose''' is a carbohydrate with the formula C<sub>5</sub>H<sub>10</sub>O<sub>5</sub>, that exists in two forms: '''D-ribose''', which occurs in nature and '''L-ribose''', which is the mirror image of D-ribose and does not occur in nature.<ref>{{Cite web|url=https://alevelbiology.co.uk/notes/ribose/|title=Ribose {{!}} Structure, Properties, Synthesis, Facts & Summary|date=2020-04-14|language=en-US|access-date=2024-06-10}}</ref>

D-ribose is a building block used by the cells in one of the chemical pathways that makes the energy molecule, [[Adenosine triphosphate|ATP]].<ref name="dmdr" />

D-ribose comes in powder form, tastes sweet, and can used as a [[sugar]] substitute in drinks or on cereal.<ref>{{Cite web|url=https://www.webmd.com/vitamins-and-supplements/ribose-uses-and-risks | title = Ribose: Uses and Risks | last =McMillen | first = Matt|website=WebMD|language=en|access-date=2022-12-19}}</ref>

==Use in ME/CFS and FM==
It is used as a supplement to help boost muscle energy, such as for athletes and people with [[ME/CFS]], [[Fibromyalgia]], and congestive heart failure.{{Citation needed|reason=Supplement usage in ME/CFS and fibromyalgia|date=10 June 2024}}<ref>{{Cite journal|title=D-ribose aids congestive heart failure patients|date=2004|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2716264/|journal=Experimental & Clinical Cardiology|volume=9|issue=2|pages=117–118|last=Omran|first=Heyder|last2=McCarter|first2=Dean|last3=St Cyr|first3=John|last4=Lüderitz|first4=Berndt|pmc=2716264|pmid=19641697|issn=1205-6626}}</ref> The theory is that if one supplies the body with the precursors to [[Adenosine triphosphate|ATP]], then it will be easier for the body to make ATP.<ref name="dmdr" /> Patients with chronic fatigue syndrome/myalgic encephalomyelitis are thought to be deficient in ATP or suffer from mitochondrial dysfunction.{{Citation needed|reason=Mictochondria/ATP claim|date=10 June 2024}}

==Sources ==
Supplemental d-ribose is manufactured from corn, so is to be avoided by those with corn [[Allergy|allergies]] or insensitivities.<ref name="dmdr" />

==ME/CFS and Fibromyalgia==
In 2008, a pilot study of 41 patients with ME/CFS or fibromyalgia by [[Jacob Teitelbaum]] stated that in: "Approximately 66% of patients experienced significant improvement while on D-ribose [at a dose of 5g, three times a day], with an average increase in energy on the VAS [visual analog scale categories: energy; sleep; mental clarity; and pain intensity] of 45% and an average improvement in overall well-being of 30% (p < 0.0001)." The study authors concluded that "D-ribose significantly reduced clinical symptoms in patients suffering from fibromyalgia and chronic fatigue syndrome".<ref name="dr2006" /> A follow-up study by Teitelbaum and colleagues (2012) lead to similar results.<ref name=":0">{{Cite journal | last = Teitelbaum | first = Jacob| date = 2012-06-27 | title = Treatment of Chronic Fatigue Syndrome and Fibromyalgia with D-Ribose– An Open-label, Multicenter Study|url=http://benthamopen.com/ABSTRACT/TOPAINJ-5-32|journal=The Open Pain Journal|language=en|volume=5|issue=1|pages=32–37|doi=10.2174/1876386301205010032 | last2= | first2 = |pmc=|pmid=|quote= | last3= | first3 = | last4 = | first4 = | last5 = | first5 = | last6 = | first6 = | last9 = | first9 = | authorlink = Jacob Teitelbaum | author-link2 = |access-date=|via=}}</ref> Neither study was placebo controlled.

==Notable studies==
*2012, Treatment of Chronic Fatigue Syndrome and Fibromyalgia with D-Ribose– An Open-label, Multicenter Study<ref name=":0" /> [http://benthamopen.com/ABSTRACT/TOPAINJ-5-32 (Abstract)]
*2006, The Use of D-Ribose in Chronic Fatigue Syndrome and Fibromyalgia: A Pilot Study<ref name="dr2006" /> [https://www.liebertpub.com/doi/10.1089/acm.2006.12.85 (Abstract)]

==Risks and side effects ==
Oral D-Ribose intake is linked to [[Memory problems|memory loss]], [[anxiety]], and Aβ-like deposits associated with Alzheimer’s in mice.<ref>{{Cite journal | last = Wu | first = Beibei | last2 = Wei | first2 = Yan | last3 = Wang | first3 = Yujing | last4 = Su | first4 = Tao | last5 = Zhou | first5 = Lei | last6 = Liu | first6 = Ying | last7 = He | first7 = Rongqiao| date = 2015-10-07 | title = Gavage of D-Ribose induces Aβ-like deposits, Tau hyperphosphorylation as well as memory loss and anxiety-like behavior in mice|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4741441/|journal=Oncotarget|volume=6|issue=33|pages=34128–34142|issn=1949-2553|pmc=4741441|pmid=26452037}}</ref><ref>{{Cite journal | last = Han | first = C. | last2 = Lu | first2 = Y. | last3 = Wei | first3 = Y. | last4 = Wu | first4 = B. | last5 = Liu | first5 = Y. | last6 = He | first6 = R. | date = Mar 2014 | title = D -ribosylation induces cognitive impairment through RAGE-dependent astrocytic inflammation|url=https://www.nature.com/articles/cddis201489|journal=Cell Death & Disease|language=en|volume=5|issue=3| pages = e1117–e1117|doi=10.1038/cddis.2014.89|issn=2041-4889|pmc=|pmid=|quote=|access-date=|via=}}</ref>

D-ribose lowers blood sugar.<ref>{{Cite journal |last=Segal |first=Stanton |last2=Foley |first2=Joseph |date=1958-05-01 |title=THE METABOLISM OF D-RIBOSE IN MAN |url=http://www.jci.org/articles/view/103658 |journal=Journal of Clinical Investigation |language=en |volume=37 |issue=5 |pages=719–735 |doi=10.1172/JCI103658 |issn=0021-9738 |pmc=PMC293144 |pmid=13539215}}</ref>

==Learn more==
*[https://en.wikipedia.org/wiki/Ribose Wikipedia - Ribose]
*[http://drmyhill.co.uk/wiki/d-ribose Dr Sarah Myhill - D-ribose]
*2016, [https://cfsremission.wordpress.com/2016/02/25/d-ribose-revisited/ D-Ribose revisited] - CFS Remission
*2012, [https://cfsremission.wordpress.com/2012/11/19/d-ribose/ D-Ribose]

==See also==
*[[Cognitive dysfunction]]
*[[Receptor for advanced glycation end products|Receptor for Advanced Glycation End products]] (RAGE)
*[[Muscle fatigability]]

== References==
<references>
<ref name="dmdr">{{Cite web|url=https://drmyhill.co.uk/wiki/d-ribose | title = D-ribose | last = | first = | author-link =| last2= | first2 = | authorlink2= | date = |website=Doctor Myhill|archive-url=|archive-date=|url-status=|access-date=2022-12-19}}</ref>
<ref name="dr2006">{{Citation| doi = 10.1089/acm.2006.12.857| issn = 1075-5535| volume = 12 | issue = 9| pages = 857–862| last1 = Teitelbaum | first1 = Jacob E. | last2 = Johnson | first2 = Clarence | last3 = St Cyr | first3 = John| title = The use of D-ribose in chronic fatigue syndrome and fibromyalgia: a pilot study| journal = Journal of Alternative and Complementary Medicine (New York, N.Y.)| date = November 2006 | pmid = 17109576|url=https://www.liebertpub.com/doi/10.1089/acm.2006.12.857 | author-link = Jacob Teitelbaum|edition=|isbn=}}</ref>
</references>

[[Category:Potential treatments]]
[[Category:Supplements]]
[[Category:Sugars]]

Ribose

2024-06-10T00:25:55Z

Forestglip:Add citation needed

'''Ribose''' is a carbohydrate with the formula C<sub>5</sub>H<sub>10</sub>O<sub>5</sub>, that exists in two forms: '''D-ribose''', which occurs in nature and '''L-ribose''', which is the mirror image of D-ribose and does not occur in nature.

D-ribose is a building block used by the cells in one of the chemical pathways that makes the energy molecule, [[Adenosine triphosphate|ATP]].<ref name="dmdr" />

D-ribose comes in powder form, tastes sweet, and can used as a [[sugar]] substitute in drinks or on cereal.<ref>{{Cite web|url=https://www.webmd.com/vitamins-and-supplements/ribose-uses-and-risks | title = Ribose: Uses and Risks | last =McMillen | first = Matt|website=WebMD|language=en|access-date=2022-12-19}}</ref>

==Use in ME/CFS and FM==
It is used as a supplement to help boost muscle energy, such as for athletes and people with [[ME/CFS]], [[Fibromyalgia]], and congestive heart failure <ref>{{Cite journal|title=D-ribose aids congestive heart failure patients|date=2004|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2716264/|journal=Experimental & Clinical Cardiology|volume=9|issue=2|pages=117–118|last=Omran|first=Heyder|last2=McCarter|first2=Dean|last3=St Cyr|first3=John|last4=Lüderitz|first4=Berndt|pmc=2716264|pmid=19641697|issn=1205-6626}}</ref> The theory is that if one supplies the body with the precursors to [[Adenosine triphosphate|ATP]], then it will be easier for the body to make ATP.<ref name="dmdr" /> Patients with chronic fatigue syndrome/myalgic encephalomyelitis are thought to be deficient in ATP or suffer from mitochondrial dysfunction.{{Citation needed|reason=Mictochondria/ATP claim|date=10 June 2024}}

==Sources==
Supplemental d-ribose is manufactured from corn, so is to be avoided by those with corn [[Allergy|allergies]] or insensitivities.<ref name="dmdr" />

==ME/CFS and Fibromyalgia==
In 2008, a pilot study of 41 patients with ME/CFS or fibromyalgia by [[Jacob Teitelbaum]] stated that in: "Approximately 66% of patients experienced significant improvement while on D-ribose [at a dose of 5g, three times a day], with an average increase in energy on the VAS [visual analog scale categories: energy; sleep; mental clarity; and pain intensity] of 45% and an average improvement in overall well-being of 30% (p < 0.0001)." The study authors concluded that "D-ribose significantly reduced clinical symptoms in patients suffering from fibromyalgia and chronic fatigue syndrome".<ref name="dr2006" /> A follow-up study by Teitelbaum and colleagues (2012) lead to similar results.<ref name=":0">{{Cite journal | last = Teitelbaum | first = Jacob| date = 2012-06-27 | title = Treatment of Chronic Fatigue Syndrome and Fibromyalgia with D-Ribose– An Open-label, Multicenter Study|url=http://benthamopen.com/ABSTRACT/TOPAINJ-5-32|journal=The Open Pain Journal|language=en|volume=5|issue=1|pages=32–37|doi=10.2174/1876386301205010032 | last2= | first2 = |pmc=|pmid=|quote= | last3= | first3 = | last4 = | first4 = | last5 = | first5 = | last6 = | first6 = | last9 = | first9 = | authorlink = Jacob Teitelbaum | author-link2 = |access-date=|via=}}</ref> Neither study was placebo controlled.

== Notable studies ==
* 2012, Treatment of Chronic Fatigue Syndrome and Fibromyalgia with D-Ribose– An Open-label, Multicenter Study<ref name=":0" /> [http://benthamopen.com/ABSTRACT/TOPAINJ-5-32 (Abstract)]
* 2006, The Use of D-Ribose in Chronic Fatigue Syndrome and Fibromyalgia: A Pilot Study<ref name="dr2006" /> [https://www.liebertpub.com/doi/10.1089/acm.2006.12.85 (Abstract)]

== Risks and side effects ==
Oral D-Ribose intake is linked to [[Memory problems|memory loss]], [[anxiety]], and Aβ-like deposits associated with Alzheimer’s in mice.<ref>{{Cite journal | last = Wu | first = Beibei | last2 = Wei | first2 = Yan | last3 = Wang | first3 = Yujing | last4 = Su | first4 = Tao | last5 = Zhou | first5 = Lei | last6 = Liu | first6 = Ying | last7 = He | first7 = Rongqiao| date = 2015-10-07 | title = Gavage of D-Ribose induces Aβ-like deposits, Tau hyperphosphorylation as well as memory loss and anxiety-like behavior in mice|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4741441/|journal=Oncotarget|volume=6|issue=33|pages=34128–34142|issn=1949-2553|pmc=4741441|pmid=26452037}}</ref><ref>{{Cite journal | last = Han | first = C. | last2 = Lu | first2 = Y. | last3 = Wei | first3 = Y. | last4 = Wu | first4 = B. | last5 = Liu | first5 = Y. | last6 = He | first6 = R. | date = Mar 2014 | title = D -ribosylation induces cognitive impairment through RAGE-dependent astrocytic inflammation|url=https://www.nature.com/articles/cddis201489|journal=Cell Death & Disease|language=en|volume=5|issue=3| pages = e1117–e1117|doi=10.1038/cddis.2014.89|issn=2041-4889|pmc=|pmid=|quote=|access-date=|via=}}</ref>

D-ribose lowers blood sugar.

==Learn more==
*[https://en.wikipedia.org/wiki/Ribose Wikipedia - Ribose]
*[http://drmyhill.co.uk/wiki/d-ribose Dr Sarah Myhill - D-ribose]
*2016, [https://cfsremission.wordpress.com/2016/02/25/d-ribose-revisited/ D-Ribose revisited] - CFS Remission
*2012, [https://cfsremission.wordpress.com/2012/11/19/d-ribose/ D-Ribose]

==See also==
* [[Cognitive dysfunction]]
* [[Receptor for advanced glycation end products|Receptor for Advanced Glycation End products]] (RAGE)
* [[Muscle fatigability]]

==References==
<references>
<ref name="dmdr">{{Cite web|url=https://drmyhill.co.uk/wiki/d-ribose | title = D-ribose | last = | first = | author-link =| last2= | first2 = | authorlink2= | date = |website=Doctor Myhill|archive-url=|archive-date=|url-status=|access-date=2022-12-19}}</ref>
<ref name="dr2006">{{Citation| doi = 10.1089/acm.2006.12.857| issn = 1075-5535| volume = 12 | issue = 9| pages = 857–862| last1 = Teitelbaum | first1 = Jacob E. | last2 = Johnson | first2 = Clarence | last3 = St Cyr | first3 = John| title = The use of D-ribose in chronic fatigue syndrome and fibromyalgia: a pilot study| journal = Journal of Alternative and Complementary Medicine (New York, N.Y.)| date = November 2006 | pmid = 17109576|url=https://www.liebertpub.com/doi/10.1089/acm.2006.12.857 | author-link = Jacob Teitelbaum|edition=|isbn=}}</ref>
</references>

[[Category:Potential treatments]]
[[Category:Supplements]]
[[Category:Sugars]]

List of ME/CFS studies controlling for deconditioning

2024-06-10T00:22:01Z

Forestglip:added citation

List of ME/CFS studies controlling for deconditioning

2024-06-10T00:18:10Z

Forestglip:/* Studies */ added study

Draft:Primer for Journalists

2024-06-08T20:01:51Z

Forestglip:Made changes to wording. removed experts. added bloggers.

:When this page is edited, please update the [[:Category:Primers|other primers]] to keep them in sync (if that section is included in the other primers). Thank you for your many recent edits! ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 14:11, June 6, 2024 (UTC)

''Note: This page is currently being discussed [https://www.s4me.info/threads/the-mepedia-primer-for-journalists.38819/ here].''

'''Myalgic encephalomyelitis (ME)''', sometimes referred to as '''chronic fatigue syndrome (CFS)''' is a serious and long-term illness. The hallmark symptom is '''[[post-exertional malaise]] (PEM)''', a marked worsening of the illness after exertion. People with ME/CFS experience debilitating [[fatigue]], non-refreshing sleep, and problems with memory or concentration. Other common symptoms include pain, gut issues, sensitivity to light and sound, and [[orthostatic intolerance]].

{{Table of contents}}

== '''Correct representation of ME/CFS''' ==

=== '''Not chronic fatigue''' ===
ME/CFS is not the same as [[chronic fatigue]] and it is important not to confuse these terms. Chronic fatigue is a symptom which can be present in numerous conditions, such as diabetes or depression. Chronic fatigue syndrome (CFS or ME/CFS) is a disorder which includes chronic fatigue as a symptom, but this is only one of several symptoms that describe the disorder.

Most people with chronic fatigue do not meet ME/CFS diagnostic criteria<ref name=":0">{{Cite journal|title=A community-based study of chronic fatigue syndrome|date=1999-10-11|url=https://pubmed.ncbi.nlm.nih.gov/10527290/|journal=Archives of Internal Medicine|volume=159|issue=18|pages=2129–2137|last=Jason|first=L. A.|last2=Richman|first2=J. A.|last3=Rademaker|first3=A. W.|last4=Jordan|first4=K. M.|last5=Plioplys|first5=A. V.|last6=Taylor|first6=R. R.|last7=McCready|first7=W.|last8=Huang|first8=C. F.|last9=Plioplys|first9=S.|doi=10.1001/archinte.159.18.2129|pmid=10527290|issn=0003-9926}}</ref>, and for many ME/CFS patients, chronic fatigue is not their most debilitating symptom. For these reasons, it is inaccurate to shorten ME/CFS to ‘chronic fatigue’ in the body of an article or its headline.

=== '''Representative images''' ===
The quality of life of persons with ME/CFS is severely reduced. The National Academy of Medicine estimates that at least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.<ref name=":2">{{Cite book|title=Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|url=http://www.ncbi.nlm.nih.gov/books/NBK274235/|publisher=National Academies Press (US)|date=2015|location=Washington (DC)|isbn=978-0-309-31689-7|pmid=25695122|series=The National Academies Collection: Reports funded by National Institutes of Health|last=Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome|last2=Board on the Health of Select Populations|last3=Institute of Medicine}}</ref> Functional impairment of ME/CFS can be greater than in disabling conditions such as [[multiple sclerosis]]<ref>{{Cite journal|title=Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls|date=2018-12|url=https://pubmed.ncbi.nlm.nih.gov/29536371/|journal=PharmacoEconomics - Open|volume=2|issue=4|pages=381–392|last=Kingdon|first=Caroline C.|last2=Bowman|first2=Erinna W.|last3=Curran|first3=Hayley|last4=Nacul|first4=Luis|last5=Lacerda|first5=Eliana M.|doi=10.1007/s41669-018-0071-6|pmc=6249197|pmid=29536371|issn=2509-4254}}</ref>, [[rheumatoid arthritis]]<ref>{{Cite journal|title=The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)|date=2015|url=https://pubmed.ncbi.nlm.nih.gov/26147503/|journal=PloS One|volume=10|issue=7|pages=e0132421|last=Falk Hvidberg|first=Michael|last2=Brinth|first2=Louise Schouborg|last3=Olesen|first3=Anne V.|last4=Petersen|first4=Karin D.|last5=Ehlers|first5=Lars|doi=10.1371/journal.pone.0132421|pmc=4492975|pmid=26147503|issn=1932-6203}}</ref> or congestive heart failure.<ref>{{Cite journal|title=Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups|date=1996-09|url=https://pubmed.ncbi.nlm.nih.gov/8873490/|journal=The American Journal of Medicine|volume=101|issue=3|pages=281–290|last=Komaroff|first=A. L.|last2=Fagioli|first2=L. R.|last3=Doolittle|first3=T. H.|last4=Gandek|first4=B.|last5=Gleit|first5=M. A.|last6=Guerriero|first6=R. T.|last7=Kornish|first7=R. J.|last8=Ware|first8=N. C.|last9=Ware|first9=J. E.|last10=Bates|first10=D. W.|doi=10.1016/S0002-9343(96)00174-X|pmid=8873490|issn=0002-9343}}</ref>

Most patients with ME/CFS can no longer work or study and are forced to reduce their social activities.<ref>{{Cite journal|title=The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database|date=2011-09-15|url=https://doi.org/10.1186/1472-6963-11-217|journal=BMC Health Services Research|volume=11|issue=1|pages=217|last=Collin|first=Simon M.|last2=Crawley|first2=Esther|last3=May|first3=Margaret T.|last4=Sterne|first4=Jonathan AC|last5=Hollingworth|first5=William|last6=UK CFS/ME National Outcomes Database|doi=10.1186/1472-6963-11-217|pmc=PMC3184626|pmid=21923897|issn=1472-6963}}</ref><ref>{{Cite journal|title=The economic impact of chronic fatigue syndrome|date=2004-06-21|url=https://doi.org/10.1186/1478-7547-2-4|journal=Cost Effectiveness and Resource Allocation|volume=2|issue=1|pages=4|last=Reynolds|first=Kenneth J.|last2=Vernon|first2=Suzanne D.|last3=Bouchery|first3=Ellen|last4=Reeves|first4=William C.|language=en|doi=10.1186/1478-7547-2-4|pmc=PMC449736|pmid=15210053|issn=1478-7547}}</ref> It is therefore inappropriate to use stock images of models in business clothing who are yawning or looking fatigued. This is not a good representation of ME/CFS.

The German association ‘Deutsche Gesellschaft für ME/CFS’ has provided [https://www.mecfs.de/stockphotos/ 32 professional photos for press use] that adequately depict the reality of people living with ME/CFS.

=== '''Not a mental disorder''' ===
Because there is no biomarker or diagnostic test, ME/CFS was incorrectly believed to be a mental disorder, an illness without disease, or a collection of symptoms that are ‘all in the mind’.<ref>{{Cite journal|title=Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients|date=2024-01|url=https://www.mdpi.com/1648-9144/60/1/83|journal=Medicina|volume=60|issue=1|pages=83|last=Thoma|first=Manuel|last2=Froehlich|first2=Laura|last3=Hattesohl|first3=Daniel B. R.|last4=Quante|first4=Sonja|last5=Jason|first5=Leonard A.|last6=Scheibenbogen|first6=Carmen|language=en|doi=10.3390/medicina60010083|pmc=10819994|pmid=38256344|issn=1648-9144}}</ref><ref>{{Cite journal|title=Ethical classification of ME/CFS in the United Kingdom|date=2019-07|url=https://pubmed.ncbi.nlm.nih.gov/30734339/|journal=Bioethics|volume=33|issue=6|pages=716–722|last=O'Leary|first=Diane|doi=10.1111/bioe.12559|pmid=30734339|issn=1467-8519}}</ref> This view is in contrast with scientific evidence and expert opinion.<ref name=":3">{{Cite journal|title=Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome|date=2019-08-13|url=https://pubmed.ncbi.nlm.nih.gov/31276153/|journal=JAMA|volume=322|issue=6|pages=499–500|last=Komaroff|first=Anthony L.|doi=10.1001/jama.2019.8312|pmid=31276153|issn=1538-3598}}</ref> The [[Centers for Disease Control and Prevention]] (CDC), for example, states: ''"ME/CFS is a biological illness, not a psychologic disorder.”''<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html|title=Clinical Overview of ME/CFS|last=CDC|date=2024-05-10|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> The [[World Health Organization]] classifies ME and CFS as Diseases of the Nervous System, using code 8E49 Postviral fatigue syndrome in the International Classification of Diseases.<ref>{{Cite web|url=https://icd.who.int/browse/2024-01/mms/en#569175314|title=ICD-11 for Mortality and Morbidity Statistics|website=icd.who.int|access-date=2024-06-06}}</ref>

== Basic facts about ME/CFS ==

=== '''Epidemiology''' ===
ME/CFS affects approximately 0.4% of the population or 1 in 250 people.<ref name=":0" /><ref name=":1">{{Cite journal|title=Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)|date=2020-02-24|url=https://pubmed.ncbi.nlm.nih.gov/32093722/|journal=Journal of Translational Medicine|volume=18|issue=1|pages=100|last=Lim|first=Eun-Jin|last2=Ahn|first2=Yo-Chan|last3=Jang|first3=Eun-Su|last4=Lee|first4=Si-Woo|last5=Lee|first5=Su-Hwa|last6=Son|first6=Chang-Gue|doi=10.1186/s12967-020-02269-0|pmc=7038594|pmid=32093722|issn=1479-5876}}</ref> The illness is much more common in women than in men: approximately 75% of patients are female.<ref name=":0" /><ref name=":1" /><ref name=":4">{{Cite journal|title=Typing myalgic encephalomyelitis by infection at onset: A DecodeME study|date=2023|url=https://pubmed.ncbi.nlm.nih.gov/37881452/|journal=NIHR open research|volume=3|pages=20|last=Bretherick|first=Andrew D.|last2=McGrath|first2=Simon J.|last3=Devereux-Cooke|first3=Andy|last4=Leary|first4=Sian|last5=Northwood|first5=Emma|last6=Redshaw|first6=Anna|last7=Stacey|first7=Pippa|last8=Tripp|first8=Claire|last9=Wilson|first9=Jim|last10=Chowdhury|first10=Sonya|last11=Lewis|first11=Isabel|doi=10.3310/nihropenres.13421.4|pmc=10593357|pmid=37881452|issn=2633-4402}}</ref> Although ME/CFS can affect people at any age, it is most common in people between the ages of 40-60 years.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/about/fast-facts-about-me-cfs.html|title=Fast Facts: ME/CFS|last=CDC|date=2024-05-31|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref>

=== '''Cause and pathology''' ===
The cause and pathology of ME/CFS remain largely unknown.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/causes/index.html|title=What Causes ME/CFS Causes|last=CDC|date=2024-06-04|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> Infections are considered a risk factor. Longitudinal studies have shown that infectious diseases such as mononucleosis increase the chances of developing ME/CFS.<ref>{{Cite journal|title=Chronic fatigue syndrome after infectious mononucleosis in adolescents|date=2009-07|url=https://pubmed.ncbi.nlm.nih.gov/19564299/|journal=Pediatrics|volume=124|issue=1|pages=189–193|last=Katz|first=Ben Z.|last2=Shiraishi|first2=Yukiko|last3=Mears|first3=Cynthia J.|last4=Binns|first4=Helen J.|last5=Taylor|first5=Renee|doi=10.1542/peds.2008-1879|pmc=2756827|pmid=19564299|issn=1098-4275}}</ref><ref>{{Cite journal|title=Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever|date=1998-12|url=https://pubmed.ncbi.nlm.nih.gov/9926075/|journal=The British Journal of Psychiatry: The Journal of Mental Science|volume=173|pages=475–481|last=White|first=P. D.|last2=Thomas|first2=J. M.|last3=Amess|first3=J.|last4=Crawford|first4=D. H.|last5=Grover|first5=S. A.|last6=Kangro|first6=H. O.|last7=Clare|first7=A. W.|doi=10.1192/bjp.173.6.475|pmid=9926075|issn=0007-1250}}</ref> Increased incidence has also been reported following [[Q fever|Q-fever]], [[Ross River virus|Ross River Virus]], [[giardiasis]], and several other infections.<ref>{{Cite journal|title=Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study|date=2006-09-16|url=https://pubmed.ncbi.nlm.nih.gov/16950834/|journal=BMJ (Clinical research ed.)|volume=333|issue=7568|pages=575|last=Hickie|first=Ian|last2=Davenport|first2=Tracey|last3=Wakefield|first3=Denis|last4=Vollmer-Conna|first4=Ute|last5=Cameron|first5=Barbara|last6=Vernon|first6=Suzanne D.|last7=Reeves|first7=William C.|last8=Lloyd|first8=Andrew|last9=Dubbo Infection Outcomes Study Group|doi=10.1136/bmj.38933.585764.AE|pmc=1569956|pmid=16950834|issn=1756-1833}}</ref> Contracting [[Severe acute respiratory syndrome coronavirus 2|SARS-CoV-2]], the virus responsible for the [[COVID-19|COVID]] pandemic, leads to a higher risk of ME/CFS, and a substantial proportion of patients with [[Long COVID]] meet ME/CFS diagnostic criteria.<ref>{{Cite journal|title=Unexplained post-acute infection syndromes|date=2022-05|url=https://www.nature.com/articles/s41591-022-01810-6|journal=Nature Medicine|volume=28|issue=5|pages=911–923|last=Choutka|first=Jan|last2=Jansari|first2=Viraj|last3=Hornig|first3=Mady|last4=Iwasaki|first4=Akiko|language=en|doi=10.1038/s41591-022-01810-6|issn=1546-170X}}</ref><ref>{{Cite journal|title=The risks of autoimmune- and inflammatory post-acute COVID-19 conditions: a network cohort study in six European countries, the US, and Korea|date=2024-05-15|url=https://www.medrxiv.org/content/10.1101/2024.05.15.24307344v1|pages=2024.05.15.24307344|last=Burkard|first=Theresa|last2=López-Güell|first2=Kim|last3=Català|first3=Martí|last4=Burn|first4=Edward|last5=Delmestri|first5=Antonella|last6=Khalid|first6=Sara|last7=Joedicke|first7=Annika M.|last8=Dedman|first8=Daniel|last9=Oyinlola|first9=Jessie O.|last10=Abellan|first10=Alicia|last11=Pérez-Crespo|first11=Laura|language=en|doi=10.1101/2024.05.15.24307344v1.supplementary-material}}</ref><ref>{{Cite journal|title=A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity|date=2022-08-30|url=https://pubmed.ncbi.nlm.nih.gov/36042189/|journal=Nature Communications|volume=13|issue=1|pages=5104|last=Kedor|first=Claudia|last2=Freitag|first2=Helma|last3=Meyer-Arndt|first3=Lil|last4=Wittke|first4=Kirsten|last5=Hanitsch|first5=Leif G.|last6=Zoller|first6=Thomas|last7=Steinbeis|first7=Fridolin|last8=Haffke|first8=Milan|last9=Rudolf|first9=Gordon|last10=Heidecker|first10=Bettina|last11=Bobbert|first11=Thomas|doi=10.1038/s41467-022-32507-6|pmc=9426365|pmid=36042189|issn=2041-1723}}</ref>

ME/CFS is suspected to have a genetic component.<ref>{{Cite journal|title=Genetic risk factors of ME/CFS: a critical review|date=2020-09-30|url=https://pubmed.ncbi.nlm.nih.gov/32744306/|journal=Human Molecular Genetics|volume=29|issue=R1|pages=R117–R124|last=Dibble|first=Joshua J.|last2=McGrath|first2=Simon J.|last3=Ponting|first3=Chris P.|doi=10.1093/hmg/ddaa169|pmc=7530519|pmid=32744306|issn=1460-2083}}</ref> The [[DecodeME|DecodeME project]] in the UK has collected samples of more than 20,000 ME/CFS patients to perform a genome-wide analysis.<ref name=":4" />

Researchers have reported abnormalities in the [[immune system]], [[Metabolic|metabolism]], [[cardiovascular system]], brain signalling, [[Endothelial dysfunction|endothelial function]], and other bodily functions of ME/CFS patients.<ref name=":2" /><ref name=":3" /> However, most of these findings are not specific to ME/CFS (they are also found in other conditions) or have not been replicated by multiple research groups.

=== '''Treatment''' ===
There are no [[U.S. Food and Drug Administration|Food and Drug Administration]] (FDA) or [[European Medicines Agency]] (EMA) approved treatments for ME/CFS. Physicians aim to reduce the impact of ME/CFS by managing or treating individual symptoms. The [[EUROMENE|European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (EUROMENE) and the US Clinician's Coalition have issued guidelines and advice on symptom management.

In the past, [[graded exercise therapy]] (GET) was a popular treatment for ME/CFS. This was based on the idea that ME/CFS is perpetuated by deconditioning and avoidance of activity. In randomized trials, however, GET failed to increase employment rates and fitness levels of ME/CFS patients. Multiple reviews have evaluated the evidence supporting GET as low quality. In surveys, ME/CFS patients reported a worsening of their health following GET. The [[National Institute for Health and Care Excellence]] (NICE) therefore does not recommend exercise programs as treatments of ME/CFS and actively recommends against GET.<ref name=":5">{{Cite web|url=https://www.nice.org.uk/guidance/ng206/chapter/Recommendations|title=Recommendations {{!}} Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management {{!}} Guidance {{!}} NICE|date=2021-10-29|website=www.nice.org.uk|access-date=2024-06-08}}</ref>

Counselling including [[cognitive behavioral therapy]] (CBT) may be offered to people to help them cope with the disease. CBT that assumes patients have 'abnormal' illness beliefs and behaviors as an underlying cause of their ME/CFS is no longer recommended by NICE.<ref name=":5" />

Surveys indicate that ME/CFS patients often find [[pacing]] useful. Pacing is a self-management strategy where activities are dosed so that patients can remain as active as possible without causing post-exertional malaise.

== Advocacy ==

=== '''Psychosomatic theories and stigma''' ===
Because blood tests often return normal and most patients are women, ME/CFS has historically been minimalized. The illness has inappropriately been called ‘[[Yuppie Flu|yuppie flu]]’ and was once dismissed as [[hysteria]]. Patients have reported harm from [[Psychosomatic illness|psychosomatic theories]] that assume ME/CFS to be caused by abnormal illness beliefs and excessive resting behavior. This has been a barrier to appropriate patient care and has caused much suffering.<ref>{{Cite journal|title=Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study|date=Mar 15, 2024|url=https://www.sciencedirect.com/science/article/pii/S2405844024030627|journal=Heliyon|volume=10|issue=5|pages=e27031|last=König|first=Rahel Susanne|last2=Paris|first2=Daniel Henry|last3=Sollberger|first3=Marc|last4=Tschopp|first4=Rea|language=en-US|doi=10.1016/j.heliyon.2024.e27031|pmc=10907781|pmid=38434357|issn=2405-8440}}</ref>
[[File:NIH funding.png|[https://report.nih.gov/funding/categorical-spending#/ Research funding by National Institutes of Health (NIH) for ME/CFS and similar illness categories.]|thumb|800x800px]]

=== High disease burden, low funding ===
Economic costs due to ME/CFS are high. In the United States, estimates range from $36 to $51 billion per year, considering both lost wages and healthcare costs. In Europe, the illness has been estimated to affect up to 2.2% of the population<ref>{{Cite journal|title=Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology|date=2020-05-21|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7290765/|journal=Journal of Clinical Medicine|volume=9|issue=5|pages=1557|last=Estévez-López|first=Fernando|last2=Mudie|first2=Kathleen|last3=Wang-Steverding|first3=Xia|last4=Bakken|first4=Inger Johanne|last5=Ivanovs|first5=Andrejs|last6=Castro-Marrero|first6=Jesús|last7=Nacul|first7=Luis|last8=Alegre|first8=Jose|last9=Zalewski|first9=Paweł|last10=Słomko|first10=Joanna|last11=Strand|first11=Elin Bolle|doi=10.3390/jcm9051557|pmc=7290765|pmid=32455633|issn=2077-0383}}</ref> and the annual burden of ME/CFS is estimated to be 40 billion euros annually.{{Citation needed|reason=Annual euro amount|date=7 June 2024}}

Despite its high disease burden, research on ME/CFS remains underfunded. One analysis of NIH funding found that ME/CFS research only receives 7% of the amount commensurate with its disease burden. A study contracted by the European Commission also identified ME/CFS as a high-burden, under-researched medical condition.

=== '''12 May: World ME Day''' ===
ME/CFS organizations have advocated against stigma and for more recognition of the illness in research and the healthcare system. On 12 May, World ME/CFS Day, various awareness events are organized worldwide to highlight the millions of ME/CFS patients who have disappeared from public life because of their illness. These are often called ‘Millions Missing’ events, a campaign coordinated by the US-based [[The MEAction Network|ME Action Network]].

== Resources ==

=== '''Reports and guidelines''' ===

* National Academy of Medicine (NAM). [https://pubmed.ncbi.nlm.nih.gov/25695122/ Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness], 2015.
* National Institute for Health and Care Excellence (NICE). [https://www.nice.org.uk/guidance/ng206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management]. NICE guideline [NG206]. 29 October 2021.
* Institute for Quality and Efficiency in Health Care (IQWiG). [https://www.iqwig.de/en/presse/press-releases/press-releases-detailpage_93184.html ME/CFS: The current state of knowledge]. 15 May 2013.
* Centers for Disease Control and Prevention (CDC). [https://www.cdc.gov/me-cfs/about/index.html#:~:text=Myalgic%20encephalomyelitis%2Fchronic%20fatigue%20syndrome%20(ME%2FCFS)%20is,no%20known%20cause%20or%20cure. ME/CFS Basics]. 10 May 2024.

=== '''Patient organizations''' ===

* [https://worldmealliance.org/ World ME Alliance]
* [https://www.meaction.net/ ME Action Network]
* [https://meassociation.org.uk/ The ME Association]
* [https://www.mecfs.de/ Deutsche Gesellschaft für ME/CFS.]
* [https://www.europeanmealliance.org/index.shtml European ME Alliance]

=== '''Examples of excellent reporting''' ===

* George Monbiot. ‘[https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal.] The Guardian, 12 March 2024.
* Ed Yong. [https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/ Fatigue Can Shatter a Person]. The Atlantic, 27 July 2023.
* David Tuller. [https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/ When the doctor doesn’t listen]. Coda, 27 January 2023.

=== Recommended reading ===

* [https://thesciencebit.net/category/me-cfs/ The Science Bit] - Blog by Brian Hughes
* [https://trialbyerror.org/ Trial by Error] - Blog by David Tuller

== References ==

Draft:Primer for Journalists

2024-06-08T03:40:02Z

Forestglip:/* Not chronic fatigue */ grammar

:When this page is edited, please update the [[:Category:Primers|other primers]] to keep them in sync (if that section is included in the other primers). Thank you for your many recent edits! ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 14:11, June 6, 2024 (UTC)

''Note: This page is currently being discussed [https://www.s4me.info/threads/the-mepedia-primer-for-journalists.38819/ here].''

'''Myalgic encephalomyelitis (ME)''', sometimes referred to as '''chronic fatigue syndrome (CFS)''' is a serious and long-term illness. The hallmark symptom is '''[[post-exertional malaise]] (PEM)''', a marked worsening of the illness after exertion. People with ME/CFS experience debilitating [[fatigue]], non-refreshing sleep, and problems with memory or concentration. Other common symptoms include pain, gut issues, sensitivity to light and sound, and [[orthostatic intolerance]].

{{Table of contents}}

== '''Correct representation of ME/CFS''' ==

=== '''Not chronic fatigue''' ===
ME/CFS is not the same as [[chronic fatigue]] and it is important not to confuse these terms. Chronic fatigue is a symptom which can be present in numerous conditions, such as diabetes or depression. Chronic fatigue syndrome (CFS or ME/CFS) is a disorder which includes chronic fatigue as a symptom, but this is only one of several symptoms that describe the disorder.

Most people with chronic fatigue do not meet ME/CFS diagnostic criteria<ref name=":0">{{Cite journal|title=A community-based study of chronic fatigue syndrome|date=1999-10-11|url=https://pubmed.ncbi.nlm.nih.gov/10527290/|journal=Archives of Internal Medicine|volume=159|issue=18|pages=2129–2137|last=Jason|first=L. A.|last2=Richman|first2=J. A.|last3=Rademaker|first3=A. W.|last4=Jordan|first4=K. M.|last5=Plioplys|first5=A. V.|last6=Taylor|first6=R. R.|last7=McCready|first7=W.|last8=Huang|first8=C. F.|last9=Plioplys|first9=S.|doi=10.1001/archinte.159.18.2129|pmid=10527290|issn=0003-9926}}</ref>, and for many ME/CFS patients, chronic fatigue is not their most debilitating symptom. For these reasons, it is inaccurate to shorten ME/CFS to ‘chronic fatigue’ in the body of an article or its headline.

=== '''Representative images''' ===
The quality of life of persons with ME/CFS is severely reduced. The National Academy of Medicine estimates that at least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.<ref name=":2">{{Cite book|title=Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|url=http://www.ncbi.nlm.nih.gov/books/NBK274235/|publisher=National Academies Press (US)|date=2015|location=Washington (DC)|isbn=978-0-309-31689-7|pmid=25695122|series=The National Academies Collection: Reports funded by National Institutes of Health|last=Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome|last2=Board on the Health of Select Populations|last3=Institute of Medicine}}</ref> Functional impairment of ME/CFS can be greater than in disabling conditions such as [[multiple sclerosis]]<ref>{{Cite journal|title=Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls|date=2018-12|url=https://pubmed.ncbi.nlm.nih.gov/29536371/|journal=PharmacoEconomics - Open|volume=2|issue=4|pages=381–392|last=Kingdon|first=Caroline C.|last2=Bowman|first2=Erinna W.|last3=Curran|first3=Hayley|last4=Nacul|first4=Luis|last5=Lacerda|first5=Eliana M.|doi=10.1007/s41669-018-0071-6|pmc=6249197|pmid=29536371|issn=2509-4254}}</ref>, [[rheumatoid arthritis]]<ref>{{Cite journal|title=The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)|date=2015|url=https://pubmed.ncbi.nlm.nih.gov/26147503/|journal=PloS One|volume=10|issue=7|pages=e0132421|last=Falk Hvidberg|first=Michael|last2=Brinth|first2=Louise Schouborg|last3=Olesen|first3=Anne V.|last4=Petersen|first4=Karin D.|last5=Ehlers|first5=Lars|doi=10.1371/journal.pone.0132421|pmc=4492975|pmid=26147503|issn=1932-6203}}</ref> or congestive heart failure.<ref>{{Cite journal|title=Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups|date=1996-09|url=https://pubmed.ncbi.nlm.nih.gov/8873490/|journal=The American Journal of Medicine|volume=101|issue=3|pages=281–290|last=Komaroff|first=A. L.|last2=Fagioli|first2=L. R.|last3=Doolittle|first3=T. H.|last4=Gandek|first4=B.|last5=Gleit|first5=M. A.|last6=Guerriero|first6=R. T.|last7=Kornish|first7=R. J.|last8=Ware|first8=N. C.|last9=Ware|first9=J. E.|last10=Bates|first10=D. W.|doi=10.1016/S0002-9343(96)00174-X|pmid=8873490|issn=0002-9343}}</ref>

Most patients with ME/CFS can no longer work or study and are forced to reduce their social activities.<ref>{{Cite journal|title=The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database|date=2011-09-15|url=https://doi.org/10.1186/1472-6963-11-217|journal=BMC Health Services Research|volume=11|issue=1|pages=217|last=Collin|first=Simon M.|last2=Crawley|first2=Esther|last3=May|first3=Margaret T.|last4=Sterne|first4=Jonathan AC|last5=Hollingworth|first5=William|last6=UK CFS/ME National Outcomes Database|doi=10.1186/1472-6963-11-217|pmc=PMC3184626|pmid=21923897|issn=1472-6963}}</ref><ref>{{Cite journal|title=The economic impact of chronic fatigue syndrome|date=2004-06-21|url=https://doi.org/10.1186/1478-7547-2-4|journal=Cost Effectiveness and Resource Allocation|volume=2|issue=1|pages=4|last=Reynolds|first=Kenneth J.|last2=Vernon|first2=Suzanne D.|last3=Bouchery|first3=Ellen|last4=Reeves|first4=William C.|language=en|doi=10.1186/1478-7547-2-4|pmc=PMC449736|pmid=15210053|issn=1478-7547}}</ref> It is therefore inappropriate to use stock images of models in business clothing who are yawning or looking fatigued. This is not a good representation of ME/CFS.

The German association ‘Deutsche Gesellschaft für ME/CFS’ has provided [https://www.mecfs.de/stockphotos/ 32 professional photos for press use] that adequately depict the reality of people living with ME/CFS.

=== '''Not a mental disorder''' ===
Because there is no biomarker or diagnostic test, ME/CFS was incorrectly believed to be a mental disorder, an illness without disease, or a collection of symptoms that are ‘all in the mind’.<ref>{{Cite journal|title=Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients|date=2024-01|url=https://www.mdpi.com/1648-9144/60/1/83|journal=Medicina|volume=60|issue=1|pages=83|last=Thoma|first=Manuel|last2=Froehlich|first2=Laura|last3=Hattesohl|first3=Daniel B. R.|last4=Quante|first4=Sonja|last5=Jason|first5=Leonard A.|last6=Scheibenbogen|first6=Carmen|language=en|doi=10.3390/medicina60010083|pmc=10819994|pmid=38256344|issn=1648-9144}}</ref><ref>{{Cite journal|title=Ethical classification of ME/CFS in the United Kingdom|date=2019-07|url=https://pubmed.ncbi.nlm.nih.gov/30734339/|journal=Bioethics|volume=33|issue=6|pages=716–722|last=O'Leary|first=Diane|doi=10.1111/bioe.12559|pmid=30734339|issn=1467-8519}}</ref> This view is in contrast with scientific evidence and expert opinion.<ref name=":3">{{Cite journal|title=Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome|date=2019-08-13|url=https://pubmed.ncbi.nlm.nih.gov/31276153/|journal=JAMA|volume=322|issue=6|pages=499–500|last=Komaroff|first=Anthony L.|doi=10.1001/jama.2019.8312|pmid=31276153|issn=1538-3598}}</ref> The [[Centers for Disease Control and Prevention]] (CDC), for example, states: ''"ME/CFS is a biological illness, not a psychologic disorder.”''<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html|title=Clinical Overview of ME/CFS|last=CDC|date=2024-05-10|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> The [[World Health Organization]] classifies ME and CFS as Diseases of the Nervous System, using code 8E49 Postviral fatigue syndrome in the International Classification of Diseases.<ref>{{Cite web|url=https://icd.who.int/browse/2024-01/mms/en#569175314|title=ICD-11 for Mortality and Morbidity Statistics|website=icd.who.int|access-date=2024-06-06}}</ref>

== Basic facts about ME/CFS ==

=== '''Epidemiology''' ===
ME/CFS affects approximately 0.4% of the population or 1 in 250 people.<ref name=":0" /><ref name=":1">{{Cite journal|title=Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)|date=2020-02-24|url=https://pubmed.ncbi.nlm.nih.gov/32093722/|journal=Journal of Translational Medicine|volume=18|issue=1|pages=100|last=Lim|first=Eun-Jin|last2=Ahn|first2=Yo-Chan|last3=Jang|first3=Eun-Su|last4=Lee|first4=Si-Woo|last5=Lee|first5=Su-Hwa|last6=Son|first6=Chang-Gue|doi=10.1186/s12967-020-02269-0|pmc=7038594|pmid=32093722|issn=1479-5876}}</ref> The illness is much more common in women than in men: approximately 75% of patients are female.<ref name=":0" /><ref name=":1" /><ref name=":4">{{Cite journal|title=Typing myalgic encephalomyelitis by infection at onset: A DecodeME study|date=2023|url=https://pubmed.ncbi.nlm.nih.gov/37881452/|journal=NIHR open research|volume=3|pages=20|last=Bretherick|first=Andrew D.|last2=McGrath|first2=Simon J.|last3=Devereux-Cooke|first3=Andy|last4=Leary|first4=Sian|last5=Northwood|first5=Emma|last6=Redshaw|first6=Anna|last7=Stacey|first7=Pippa|last8=Tripp|first8=Claire|last9=Wilson|first9=Jim|last10=Chowdhury|first10=Sonya|last11=Lewis|first11=Isabel|doi=10.3310/nihropenres.13421.4|pmc=10593357|pmid=37881452|issn=2633-4402}}</ref> Although ME/CFS can affect people at any age, it is most common in people between the ages of 40-60 years.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/about/fast-facts-about-me-cfs.html|title=Fast Facts: ME/CFS|last=CDC|date=2024-05-31|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref>

=== '''Cause and pathology''' ===
The cause and pathology of ME/CFS remain largely unknown.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/causes/index.html|title=What Causes ME/CFS Causes|last=CDC|date=2024-06-04|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> Infections are considered a risk factor. Longitudinal studies have shown that infectious diseases such as mononucleosis increase the chances of developing ME/CFS.<ref>{{Cite journal|title=Chronic fatigue syndrome after infectious mononucleosis in adolescents|date=2009-07|url=https://pubmed.ncbi.nlm.nih.gov/19564299/|journal=Pediatrics|volume=124|issue=1|pages=189–193|last=Katz|first=Ben Z.|last2=Shiraishi|first2=Yukiko|last3=Mears|first3=Cynthia J.|last4=Binns|first4=Helen J.|last5=Taylor|first5=Renee|doi=10.1542/peds.2008-1879|pmc=2756827|pmid=19564299|issn=1098-4275}}</ref><ref>{{Cite journal|title=Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever|date=1998-12|url=https://pubmed.ncbi.nlm.nih.gov/9926075/|journal=The British Journal of Psychiatry: The Journal of Mental Science|volume=173|pages=475–481|last=White|first=P. D.|last2=Thomas|first2=J. M.|last3=Amess|first3=J.|last4=Crawford|first4=D. H.|last5=Grover|first5=S. A.|last6=Kangro|first6=H. O.|last7=Clare|first7=A. W.|doi=10.1192/bjp.173.6.475|pmid=9926075|issn=0007-1250}}</ref> Increased incidence has also been reported following [[Q fever|Q-fever]], [[Ross River virus|Ross River Virus]], [[giardiasis]], and several other infections.<ref>{{Cite journal|title=Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study|date=2006-09-16|url=https://pubmed.ncbi.nlm.nih.gov/16950834/|journal=BMJ (Clinical research ed.)|volume=333|issue=7568|pages=575|last=Hickie|first=Ian|last2=Davenport|first2=Tracey|last3=Wakefield|first3=Denis|last4=Vollmer-Conna|first4=Ute|last5=Cameron|first5=Barbara|last6=Vernon|first6=Suzanne D.|last7=Reeves|first7=William C.|last8=Lloyd|first8=Andrew|last9=Dubbo Infection Outcomes Study Group|doi=10.1136/bmj.38933.585764.AE|pmc=1569956|pmid=16950834|issn=1756-1833}}</ref> Contracting [[Severe acute respiratory syndrome coronavirus 2|SARS-CoV-2]], the virus responsible for the [[COVID-19|COVID]] pandemic, leads to a higher risk of ME/CFS, and a substantial proportion of patients with [[Long COVID]] meet ME/CFS diagnostic criteria.<ref>{{Cite journal|title=Unexplained post-acute infection syndromes|date=2022-05|url=https://www.nature.com/articles/s41591-022-01810-6|journal=Nature Medicine|volume=28|issue=5|pages=911–923|last=Choutka|first=Jan|last2=Jansari|first2=Viraj|last3=Hornig|first3=Mady|last4=Iwasaki|first4=Akiko|language=en|doi=10.1038/s41591-022-01810-6|issn=1546-170X}}</ref><ref>{{Cite journal|title=The risks of autoimmune- and inflammatory post-acute COVID-19 conditions: a network cohort study in six European countries, the US, and Korea|date=2024-05-15|url=https://www.medrxiv.org/content/10.1101/2024.05.15.24307344v1|pages=2024.05.15.24307344|last=Burkard|first=Theresa|last2=López-Güell|first2=Kim|last3=Català|first3=Martí|last4=Burn|first4=Edward|last5=Delmestri|first5=Antonella|last6=Khalid|first6=Sara|last7=Joedicke|first7=Annika M.|last8=Dedman|first8=Daniel|last9=Oyinlola|first9=Jessie O.|last10=Abellan|first10=Alicia|last11=Pérez-Crespo|first11=Laura|language=en|doi=10.1101/2024.05.15.24307344v1.supplementary-material}}</ref><ref>{{Cite journal|title=A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity|date=2022-08-30|url=https://pubmed.ncbi.nlm.nih.gov/36042189/|journal=Nature Communications|volume=13|issue=1|pages=5104|last=Kedor|first=Claudia|last2=Freitag|first2=Helma|last3=Meyer-Arndt|first3=Lil|last4=Wittke|first4=Kirsten|last5=Hanitsch|first5=Leif G.|last6=Zoller|first6=Thomas|last7=Steinbeis|first7=Fridolin|last8=Haffke|first8=Milan|last9=Rudolf|first9=Gordon|last10=Heidecker|first10=Bettina|last11=Bobbert|first11=Thomas|doi=10.1038/s41467-022-32507-6|pmc=9426365|pmid=36042189|issn=2041-1723}}</ref>

ME/CFS is suspected to have a genetic component.<ref>{{Cite journal|title=Genetic risk factors of ME/CFS: a critical review|date=2020-09-30|url=https://pubmed.ncbi.nlm.nih.gov/32744306/|journal=Human Molecular Genetics|volume=29|issue=R1|pages=R117–R124|last=Dibble|first=Joshua J.|last2=McGrath|first2=Simon J.|last3=Ponting|first3=Chris P.|doi=10.1093/hmg/ddaa169|pmc=7530519|pmid=32744306|issn=1460-2083}}</ref> The [[DecodeME|DecodeME project]] in the UK has collected samples of more than 20,000 ME/CFS patients to perform a genome-wide analysis.<ref name=":4" />

Researchers have reported abnormalities in the [[immune system]], [[Metabolic|metabolism]], [[cardiovascular system]], brain signalling, [[Endothelial dysfunction|endothelial function]], and other bodily functions of ME/CFS patients.<ref name=":2" /><ref name=":3" /> However, most of these findings are not specific to ME/CFS (they are also found in other conditions) or have not been replicated by multiple research groups.

=== '''Treatment''' ===
There are no [[U.S. Food and Drug Administration|Food and Drug Administration]] (FDA) or [[European Medicines Agency]] (EMA) approved treatments for ME/CFS. Physicians aim to reduce the impact of ME/CFS by managing or treating individual symptoms. The [[EUROMENE|European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (EUROMENE) and the US Clinician's Coalition have issued guidelines and advice on symptom management.

In the past, [[graded exercise therapy]] (GET) was a popular treatment for ME/CFS. This was based on the idea that ME/CFS is perpetuated by deconditioning and avoidance of activity. In randomized trials, however, GET failed to increase employment rates and fitness levels of ME/CFS patients. Multiple reviews have evaluated the evidence supporting GET as low quality. In surveys, ME/CFS patients reported a worsening of their health following GET. The [[National Institute for Health and Care Excellence]] (NICE) therefore actively recommends against GET and other exercise programs for ME/CFS.

[[Cognitive behavioral therapy]] (CBT) may be offered to people with a new ME/CFS diagnosis to help them cope with the disease. CBT that assumes patients have 'abnormal' illness beliefs and behaviors as an underlying cause of their ME/CFS is no longer recommended by NICE.

Surveys indicate that ME/CFS patients often find [[pacing]] useful. Pacing is a self-management strategy where activities are dosed so that patients can remain as active as possible without causing post-exertional malaise.

== Advocacy ==

=== '''Psychosomatic theories and stigma''' ===
Because blood tests often return normal and most patients are women, ME/CFS has historically been minimalized. The illness has inappropriately been called ‘[[Yuppie Flu|yuppie flu]]’ and was once dismissed as [[hysteria]]. Patients have reported harm from [[Psychosomatic illness|psychosomatic theories]] that assume ME/CFS to be caused by abnormal illness beliefs and excessive resting behavior. This has been considered a barrier to appropriate patient care.
[[File:NIH funding.png|[https://report.nih.gov/funding/categorical-spending#/ Research funding by National Institutes of Health (NIH) for ME/CFS and similar illness categories.]|thumb|800x800px]]

=== High disease burden, low funding ===
Economic costs due to ME/CFS are high. In the United States, estimates range from $36 to $51 billion per year, considering both lost wages and healthcare costs. In Europe, the illness has been estimated to affect up to 2.2% of the population<ref>{{Cite journal|title=Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology|date=2020-05-21|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7290765/|journal=Journal of Clinical Medicine|volume=9|issue=5|pages=1557|last=Estévez-López|first=Fernando|last2=Mudie|first2=Kathleen|last3=Wang-Steverding|first3=Xia|last4=Bakken|first4=Inger Johanne|last5=Ivanovs|first5=Andrejs|last6=Castro-Marrero|first6=Jesús|last7=Nacul|first7=Luis|last8=Alegre|first8=Jose|last9=Zalewski|first9=Paweł|last10=Słomko|first10=Joanna|last11=Strand|first11=Elin Bolle|doi=10.3390/jcm9051557|pmc=7290765|pmid=32455633|issn=2077-0383}}</ref> and the annual burden of ME/CFS is estimated to be 40 billion euros annually.{{Citation needed|reason=Annual euro amount|date=7 June 2024}}

Despite its high disease burden, research on ME/CFS remains underfunded. One analysis of NIH funding found that ME/CFS research only receives 7% of the amount commensurate with its disease burden. A study contracted by the European Commission also identified ME/CFS as a high-burden, under-researched medical condition.

=== '''12 May: World ME Day''' ===
ME/CFS organizations have advocated against stigma and for more recognition of the illness in research and the healthcare system. On 12 May, World ME/CFS Day, various awareness events are organized worldwide to highlight the millions of ME/CFS patients who have disappeared from public life because of their illness. These are often called ‘Millions Missing’ events, a campaign coordinated by the US-based [[The MEAction Network|ME Action Network]].

== Resources ==

=== '''Reports and guidelines''' ===

* National Academy of Medicine (NAM). [https://pubmed.ncbi.nlm.nih.gov/25695122/ Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness], 2015.
* National Institute for Health and Care Excellence (NICE). [https://www.nice.org.uk/guidance/ng206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management]. NICE guideline [NG206]. 29 October 2021.
* Institute for Quality and Efficiency in Health Care (IQWiG). [https://www.iqwig.de/en/presse/press-releases/press-releases-detailpage_93184.html ME/CFS: The current state of knowledge]. 15 May 2013.
* Centers for Disease Control and Prevention (CDC). [https://www.cdc.gov/me-cfs/about/index.html#:~:text=Myalgic%20encephalomyelitis%2Fchronic%20fatigue%20syndrome%20(ME%2FCFS)%20is,no%20known%20cause%20or%20cure. ME/CFS Basics]. 10 May 2024.

=== '''Patient organizations''' ===

* [https://worldmealliance.org/ World ME Alliance]
* [https://www.meaction.net/ ME Action Network]
* [https://meassociation.org.uk/ The ME Association]
* [https://www.mecfs.de/ Deutsche Gesellschaft für ME/CFS.]
* [https://www.europeanmealliance.org/index.shtml European ME Alliance]

=== '''ME/CFS experts''' ===

* [[Luis Nacul]]
* [[Carmen Scheibenbogen]]
* [[Lucinda Bateman]]
* [[Nancy Klimas]]
* [[Anthony Komaroff]]
* [[Chris Ponting]]
* [[Karl Tronstad]]

=== '''Examples of excellent reporting''' ===

* George Monbiot. ‘[https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal.] The Guardian, 12 march 2024.
* Ed Yong. [https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/ Fatigue Can Shatter a Person]. The Atlantic, 27 July 2023.
* David Tuller. [https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/ When the doctor doesn’t listen]. Coda, 27 Januari 2023.

== References ==

Draft:Primer for Journalists

2024-06-08T03:39:03Z

Forestglip:/* Not chronic fatigue */ made sentence more accurate

:When this page is edited, please update the [[:Category:Primers|other primers]] to keep them in sync (if that section is included in the other primers). Thank you for your many recent edits! ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 14:11, June 6, 2024 (UTC)

''Note: This page is currently being discussed [https://www.s4me.info/threads/the-mepedia-primer-for-journalists.38819/ here].''

'''Myalgic encephalomyelitis (ME)''', sometimes referred to as '''chronic fatigue syndrome (CFS)''' is a serious and long-term illness. The hallmark symptom is '''[[post-exertional malaise]] (PEM)''', a marked worsening of the illness after exertion. People with ME/CFS experience debilitating [[fatigue]], non-refreshing sleep, and problems with memory or concentration. Other common symptoms include pain, gut issues, sensitivity to light and sound, and [[orthostatic intolerance]].

{{Table of contents}}

== '''Correct representation of ME/CFS''' ==

=== '''Not chronic fatigue''' ===
ME/CFS is not the same as [[chronic fatigue]] and it is important not to confuse these terms. Chronic fatigue is a symptom which can be present in numerous conditions, such as diabetes and depression. Chronic fatigue syndrome (CFS or ME/CFS) is a disorder which includes chronic fatigue as a symptom, but this is only one of several symptoms that describe the disorder.

Most people with chronic fatigue do not meet ME/CFS diagnostic criteria<ref name=":0">{{Cite journal|title=A community-based study of chronic fatigue syndrome|date=1999-10-11|url=https://pubmed.ncbi.nlm.nih.gov/10527290/|journal=Archives of Internal Medicine|volume=159|issue=18|pages=2129–2137|last=Jason|first=L. A.|last2=Richman|first2=J. A.|last3=Rademaker|first3=A. W.|last4=Jordan|first4=K. M.|last5=Plioplys|first5=A. V.|last6=Taylor|first6=R. R.|last7=McCready|first7=W.|last8=Huang|first8=C. F.|last9=Plioplys|first9=S.|doi=10.1001/archinte.159.18.2129|pmid=10527290|issn=0003-9926}}</ref>, and for many ME/CFS patients, chronic fatigue is not their most debilitating symptom. For these reasons, it is inaccurate to shorten ME/CFS to ‘chronic fatigue’ in the body of an article or its headline.

=== '''Representative images''' ===
The quality of life of persons with ME/CFS is severely reduced. The National Academy of Medicine estimates that at least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.<ref name=":2">{{Cite book|title=Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|url=http://www.ncbi.nlm.nih.gov/books/NBK274235/|publisher=National Academies Press (US)|date=2015|location=Washington (DC)|isbn=978-0-309-31689-7|pmid=25695122|series=The National Academies Collection: Reports funded by National Institutes of Health|last=Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome|last2=Board on the Health of Select Populations|last3=Institute of Medicine}}</ref> Functional impairment of ME/CFS can be greater than in disabling conditions such as [[multiple sclerosis]]<ref>{{Cite journal|title=Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls|date=2018-12|url=https://pubmed.ncbi.nlm.nih.gov/29536371/|journal=PharmacoEconomics - Open|volume=2|issue=4|pages=381–392|last=Kingdon|first=Caroline C.|last2=Bowman|first2=Erinna W.|last3=Curran|first3=Hayley|last4=Nacul|first4=Luis|last5=Lacerda|first5=Eliana M.|doi=10.1007/s41669-018-0071-6|pmc=6249197|pmid=29536371|issn=2509-4254}}</ref>, [[rheumatoid arthritis]]<ref>{{Cite journal|title=The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)|date=2015|url=https://pubmed.ncbi.nlm.nih.gov/26147503/|journal=PloS One|volume=10|issue=7|pages=e0132421|last=Falk Hvidberg|first=Michael|last2=Brinth|first2=Louise Schouborg|last3=Olesen|first3=Anne V.|last4=Petersen|first4=Karin D.|last5=Ehlers|first5=Lars|doi=10.1371/journal.pone.0132421|pmc=4492975|pmid=26147503|issn=1932-6203}}</ref> or congestive heart failure.<ref>{{Cite journal|title=Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups|date=1996-09|url=https://pubmed.ncbi.nlm.nih.gov/8873490/|journal=The American Journal of Medicine|volume=101|issue=3|pages=281–290|last=Komaroff|first=A. L.|last2=Fagioli|first2=L. R.|last3=Doolittle|first3=T. H.|last4=Gandek|first4=B.|last5=Gleit|first5=M. A.|last6=Guerriero|first6=R. T.|last7=Kornish|first7=R. J.|last8=Ware|first8=N. C.|last9=Ware|first9=J. E.|last10=Bates|first10=D. W.|doi=10.1016/S0002-9343(96)00174-X|pmid=8873490|issn=0002-9343}}</ref>

Most patients with ME/CFS can no longer work or study and are forced to reduce their social activities.<ref>{{Cite journal|title=The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database|date=2011-09-15|url=https://doi.org/10.1186/1472-6963-11-217|journal=BMC Health Services Research|volume=11|issue=1|pages=217|last=Collin|first=Simon M.|last2=Crawley|first2=Esther|last3=May|first3=Margaret T.|last4=Sterne|first4=Jonathan AC|last5=Hollingworth|first5=William|last6=UK CFS/ME National Outcomes Database|doi=10.1186/1472-6963-11-217|pmc=PMC3184626|pmid=21923897|issn=1472-6963}}</ref><ref>{{Cite journal|title=The economic impact of chronic fatigue syndrome|date=2004-06-21|url=https://doi.org/10.1186/1478-7547-2-4|journal=Cost Effectiveness and Resource Allocation|volume=2|issue=1|pages=4|last=Reynolds|first=Kenneth J.|last2=Vernon|first2=Suzanne D.|last3=Bouchery|first3=Ellen|last4=Reeves|first4=William C.|language=en|doi=10.1186/1478-7547-2-4|pmc=PMC449736|pmid=15210053|issn=1478-7547}}</ref> It is therefore inappropriate to use stock images of models in business clothing who are yawning or looking fatigued. This is not a good representation of ME/CFS.

The German association ‘Deutsche Gesellschaft für ME/CFS’ has provided [https://www.mecfs.de/stockphotos/ 32 professional photos for press use] that adequately depict the reality of people living with ME/CFS.

=== '''Not a mental disorder''' ===
Because there is no biomarker or diagnostic test, ME/CFS was incorrectly believed to be a mental disorder, an illness without disease, or a collection of symptoms that are ‘all in the mind’.<ref>{{Cite journal|title=Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients|date=2024-01|url=https://www.mdpi.com/1648-9144/60/1/83|journal=Medicina|volume=60|issue=1|pages=83|last=Thoma|first=Manuel|last2=Froehlich|first2=Laura|last3=Hattesohl|first3=Daniel B. R.|last4=Quante|first4=Sonja|last5=Jason|first5=Leonard A.|last6=Scheibenbogen|first6=Carmen|language=en|doi=10.3390/medicina60010083|pmc=10819994|pmid=38256344|issn=1648-9144}}</ref><ref>{{Cite journal|title=Ethical classification of ME/CFS in the United Kingdom|date=2019-07|url=https://pubmed.ncbi.nlm.nih.gov/30734339/|journal=Bioethics|volume=33|issue=6|pages=716–722|last=O'Leary|first=Diane|doi=10.1111/bioe.12559|pmid=30734339|issn=1467-8519}}</ref> This view is in contrast with scientific evidence and expert opinion.<ref name=":3">{{Cite journal|title=Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome|date=2019-08-13|url=https://pubmed.ncbi.nlm.nih.gov/31276153/|journal=JAMA|volume=322|issue=6|pages=499–500|last=Komaroff|first=Anthony L.|doi=10.1001/jama.2019.8312|pmid=31276153|issn=1538-3598}}</ref> The [[Centers for Disease Control and Prevention]] (CDC), for example, states: ''"ME/CFS is a biological illness, not a psychologic disorder.”''<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html|title=Clinical Overview of ME/CFS|last=CDC|date=2024-05-10|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> The [[World Health Organization]] classifies ME and CFS as Diseases of the Nervous System, using code 8E49 Postviral fatigue syndrome in the International Classification of Diseases.<ref>{{Cite web|url=https://icd.who.int/browse/2024-01/mms/en#569175314|title=ICD-11 for Mortality and Morbidity Statistics|website=icd.who.int|access-date=2024-06-06}}</ref>

== Basic facts about ME/CFS ==

=== '''Epidemiology''' ===
ME/CFS affects approximately 0.4% of the population or 1 in 250 people.<ref name=":0" /><ref name=":1">{{Cite journal|title=Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)|date=2020-02-24|url=https://pubmed.ncbi.nlm.nih.gov/32093722/|journal=Journal of Translational Medicine|volume=18|issue=1|pages=100|last=Lim|first=Eun-Jin|last2=Ahn|first2=Yo-Chan|last3=Jang|first3=Eun-Su|last4=Lee|first4=Si-Woo|last5=Lee|first5=Su-Hwa|last6=Son|first6=Chang-Gue|doi=10.1186/s12967-020-02269-0|pmc=7038594|pmid=32093722|issn=1479-5876}}</ref> The illness is much more common in women than in men: approximately 75% of patients are female.<ref name=":0" /><ref name=":1" /><ref name=":4">{{Cite journal|title=Typing myalgic encephalomyelitis by infection at onset: A DecodeME study|date=2023|url=https://pubmed.ncbi.nlm.nih.gov/37881452/|journal=NIHR open research|volume=3|pages=20|last=Bretherick|first=Andrew D.|last2=McGrath|first2=Simon J.|last3=Devereux-Cooke|first3=Andy|last4=Leary|first4=Sian|last5=Northwood|first5=Emma|last6=Redshaw|first6=Anna|last7=Stacey|first7=Pippa|last8=Tripp|first8=Claire|last9=Wilson|first9=Jim|last10=Chowdhury|first10=Sonya|last11=Lewis|first11=Isabel|doi=10.3310/nihropenres.13421.4|pmc=10593357|pmid=37881452|issn=2633-4402}}</ref> Although ME/CFS can affect people at any age, it is most common in people between the ages of 40-60 years.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/about/fast-facts-about-me-cfs.html|title=Fast Facts: ME/CFS|last=CDC|date=2024-05-31|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref>

=== '''Cause and pathology''' ===
The cause and pathology of ME/CFS remain largely unknown.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/causes/index.html|title=What Causes ME/CFS Causes|last=CDC|date=2024-06-04|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> Infections are considered a risk factor. Longitudinal studies have shown that infectious diseases such as mononucleosis increase the chances of developing ME/CFS.<ref>{{Cite journal|title=Chronic fatigue syndrome after infectious mononucleosis in adolescents|date=2009-07|url=https://pubmed.ncbi.nlm.nih.gov/19564299/|journal=Pediatrics|volume=124|issue=1|pages=189–193|last=Katz|first=Ben Z.|last2=Shiraishi|first2=Yukiko|last3=Mears|first3=Cynthia J.|last4=Binns|first4=Helen J.|last5=Taylor|first5=Renee|doi=10.1542/peds.2008-1879|pmc=2756827|pmid=19564299|issn=1098-4275}}</ref><ref>{{Cite journal|title=Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever|date=1998-12|url=https://pubmed.ncbi.nlm.nih.gov/9926075/|journal=The British Journal of Psychiatry: The Journal of Mental Science|volume=173|pages=475–481|last=White|first=P. D.|last2=Thomas|first2=J. M.|last3=Amess|first3=J.|last4=Crawford|first4=D. H.|last5=Grover|first5=S. A.|last6=Kangro|first6=H. O.|last7=Clare|first7=A. W.|doi=10.1192/bjp.173.6.475|pmid=9926075|issn=0007-1250}}</ref> Increased incidence has also been reported following [[Q fever|Q-fever]], [[Ross River virus|Ross River Virus]], [[giardiasis]], and several other infections.<ref>{{Cite journal|title=Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study|date=2006-09-16|url=https://pubmed.ncbi.nlm.nih.gov/16950834/|journal=BMJ (Clinical research ed.)|volume=333|issue=7568|pages=575|last=Hickie|first=Ian|last2=Davenport|first2=Tracey|last3=Wakefield|first3=Denis|last4=Vollmer-Conna|first4=Ute|last5=Cameron|first5=Barbara|last6=Vernon|first6=Suzanne D.|last7=Reeves|first7=William C.|last8=Lloyd|first8=Andrew|last9=Dubbo Infection Outcomes Study Group|doi=10.1136/bmj.38933.585764.AE|pmc=1569956|pmid=16950834|issn=1756-1833}}</ref> Contracting [[Severe acute respiratory syndrome coronavirus 2|SARS-CoV-2]], the virus responsible for the [[COVID-19|COVID]] pandemic, leads to a higher risk of ME/CFS, and a substantial proportion of patients with [[Long COVID]] meet ME/CFS diagnostic criteria.<ref>{{Cite journal|title=Unexplained post-acute infection syndromes|date=2022-05|url=https://www.nature.com/articles/s41591-022-01810-6|journal=Nature Medicine|volume=28|issue=5|pages=911–923|last=Choutka|first=Jan|last2=Jansari|first2=Viraj|last3=Hornig|first3=Mady|last4=Iwasaki|first4=Akiko|language=en|doi=10.1038/s41591-022-01810-6|issn=1546-170X}}</ref><ref>{{Cite journal|title=The risks of autoimmune- and inflammatory post-acute COVID-19 conditions: a network cohort study in six European countries, the US, and Korea|date=2024-05-15|url=https://www.medrxiv.org/content/10.1101/2024.05.15.24307344v1|pages=2024.05.15.24307344|last=Burkard|first=Theresa|last2=López-Güell|first2=Kim|last3=Català|first3=Martí|last4=Burn|first4=Edward|last5=Delmestri|first5=Antonella|last6=Khalid|first6=Sara|last7=Joedicke|first7=Annika M.|last8=Dedman|first8=Daniel|last9=Oyinlola|first9=Jessie O.|last10=Abellan|first10=Alicia|last11=Pérez-Crespo|first11=Laura|language=en|doi=10.1101/2024.05.15.24307344v1.supplementary-material}}</ref><ref>{{Cite journal|title=A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity|date=2022-08-30|url=https://pubmed.ncbi.nlm.nih.gov/36042189/|journal=Nature Communications|volume=13|issue=1|pages=5104|last=Kedor|first=Claudia|last2=Freitag|first2=Helma|last3=Meyer-Arndt|first3=Lil|last4=Wittke|first4=Kirsten|last5=Hanitsch|first5=Leif G.|last6=Zoller|first6=Thomas|last7=Steinbeis|first7=Fridolin|last8=Haffke|first8=Milan|last9=Rudolf|first9=Gordon|last10=Heidecker|first10=Bettina|last11=Bobbert|first11=Thomas|doi=10.1038/s41467-022-32507-6|pmc=9426365|pmid=36042189|issn=2041-1723}}</ref>

ME/CFS is suspected to have a genetic component.<ref>{{Cite journal|title=Genetic risk factors of ME/CFS: a critical review|date=2020-09-30|url=https://pubmed.ncbi.nlm.nih.gov/32744306/|journal=Human Molecular Genetics|volume=29|issue=R1|pages=R117–R124|last=Dibble|first=Joshua J.|last2=McGrath|first2=Simon J.|last3=Ponting|first3=Chris P.|doi=10.1093/hmg/ddaa169|pmc=7530519|pmid=32744306|issn=1460-2083}}</ref> The [[DecodeME|DecodeME project]] in the UK has collected samples of more than 20,000 ME/CFS patients to perform a genome-wide analysis.<ref name=":4" />

Researchers have reported abnormalities in the [[immune system]], [[Metabolic|metabolism]], [[cardiovascular system]], brain signalling, [[Endothelial dysfunction|endothelial function]], and other bodily functions of ME/CFS patients.<ref name=":2" /><ref name=":3" /> However, most of these findings are not specific to ME/CFS (they are also found in other conditions) or have not been replicated by multiple research groups.

=== '''Treatment''' ===
There are no [[U.S. Food and Drug Administration|Food and Drug Administration]] (FDA) or [[European Medicines Agency]] (EMA) approved treatments for ME/CFS. Physicians aim to reduce the impact of ME/CFS by managing or treating individual symptoms. The [[EUROMENE|European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (EUROMENE) and the US Clinician's Coalition have issued guidelines and advice on symptom management.

In the past, [[graded exercise therapy]] (GET) was a popular treatment for ME/CFS. This was based on the idea that ME/CFS is perpetuated by deconditioning and avoidance of activity. In randomized trials, however, GET failed to increase employment rates and fitness levels of ME/CFS patients. Multiple reviews have evaluated the evidence supporting GET as low quality. In surveys, ME/CFS patients reported a worsening of their health following GET. The [[National Institute for Health and Care Excellence]] (NICE) therefore actively recommends against GET and other exercise programs for ME/CFS.

[[Cognitive behavioral therapy]] (CBT) may be offered to people with a new ME/CFS diagnosis to help them cope with the disease. CBT that assumes patients have 'abnormal' illness beliefs and behaviors as an underlying cause of their ME/CFS is no longer recommended by NICE.

Surveys indicate that ME/CFS patients often find [[pacing]] useful. Pacing is a self-management strategy where activities are dosed so that patients can remain as active as possible without causing post-exertional malaise.

== Advocacy ==

=== '''Psychosomatic theories and stigma''' ===
Because blood tests often return normal and most patients are women, ME/CFS has historically been minimalized. The illness has inappropriately been called ‘[[Yuppie Flu|yuppie flu]]’ and was once dismissed as [[hysteria]]. Patients have reported harm from [[Psychosomatic illness|psychosomatic theories]] that assume ME/CFS to be caused by abnormal illness beliefs and excessive resting behavior. This has been considered a barrier to appropriate patient care.
[[File:NIH funding.png|[https://report.nih.gov/funding/categorical-spending#/ Research funding by National Institutes of Health (NIH) for ME/CFS and similar illness categories.]|thumb|800x800px]]

=== High disease burden, low funding ===
Economic costs due to ME/CFS are high. In the United States, estimates range from $36 to $51 billion per year, considering both lost wages and healthcare costs. In Europe, the illness has been estimated to affect up to 2.2% of the population<ref>{{Cite journal|title=Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology|date=2020-05-21|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7290765/|journal=Journal of Clinical Medicine|volume=9|issue=5|pages=1557|last=Estévez-López|first=Fernando|last2=Mudie|first2=Kathleen|last3=Wang-Steverding|first3=Xia|last4=Bakken|first4=Inger Johanne|last5=Ivanovs|first5=Andrejs|last6=Castro-Marrero|first6=Jesús|last7=Nacul|first7=Luis|last8=Alegre|first8=Jose|last9=Zalewski|first9=Paweł|last10=Słomko|first10=Joanna|last11=Strand|first11=Elin Bolle|doi=10.3390/jcm9051557|pmc=7290765|pmid=32455633|issn=2077-0383}}</ref> and the annual burden of ME/CFS is estimated to be 40 billion euros annually.{{Citation needed|reason=Annual euro amount|date=7 June 2024}}

Despite its high disease burden, research on ME/CFS remains underfunded. One analysis of NIH funding found that ME/CFS research only receives 7% of the amount commensurate with its disease burden. A study contracted by the European Commission also identified ME/CFS as a high-burden, under-researched medical condition.

=== '''12 May: World ME Day''' ===
ME/CFS organizations have advocated against stigma and for more recognition of the illness in research and the healthcare system. On 12 May, World ME/CFS Day, various awareness events are organized worldwide to highlight the millions of ME/CFS patients who have disappeared from public life because of their illness. These are often called ‘Millions Missing’ events, a campaign coordinated by the US-based [[The MEAction Network|ME Action Network]].

== Resources ==

=== '''Reports and guidelines''' ===

* National Academy of Medicine (NAM). [https://pubmed.ncbi.nlm.nih.gov/25695122/ Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness], 2015.
* National Institute for Health and Care Excellence (NICE). [https://www.nice.org.uk/guidance/ng206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management]. NICE guideline [NG206]. 29 October 2021.
* Institute for Quality and Efficiency in Health Care (IQWiG). [https://www.iqwig.de/en/presse/press-releases/press-releases-detailpage_93184.html ME/CFS: The current state of knowledge]. 15 May 2013.
* Centers for Disease Control and Prevention (CDC). [https://www.cdc.gov/me-cfs/about/index.html#:~:text=Myalgic%20encephalomyelitis%2Fchronic%20fatigue%20syndrome%20(ME%2FCFS)%20is,no%20known%20cause%20or%20cure. ME/CFS Basics]. 10 May 2024.

=== '''Patient organizations''' ===

* [https://worldmealliance.org/ World ME Alliance]
* [https://www.meaction.net/ ME Action Network]
* [https://meassociation.org.uk/ The ME Association]
* [https://www.mecfs.de/ Deutsche Gesellschaft für ME/CFS.]
* [https://www.europeanmealliance.org/index.shtml European ME Alliance]

=== '''ME/CFS experts''' ===

* [[Luis Nacul]]
* [[Carmen Scheibenbogen]]
* [[Lucinda Bateman]]
* [[Nancy Klimas]]
* [[Anthony Komaroff]]
* [[Chris Ponting]]
* [[Karl Tronstad]]

=== '''Examples of excellent reporting''' ===

* George Monbiot. ‘[https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal.] The Guardian, 12 march 2024.
* Ed Yong. [https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/ Fatigue Can Shatter a Person]. The Atlantic, 27 July 2023.
* David Tuller. [https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/ When the doctor doesn’t listen]. Coda, 27 Januari 2023.

== References ==

Draft:Primer for Journalists

2024-06-08T03:16:23Z

Forestglip:/* Not chronic fatigue */ style

:When this page is edited, please update the [[:Category:Primers|other primers]] to keep them in sync (if that section is included in the other primers). Thank you for your many recent edits! ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 14:11, June 6, 2024 (UTC)

''Note: This page is currently being discussed [https://www.s4me.info/threads/the-mepedia-primer-for-journalists.38819/ here].''

'''Myalgic encephalomyelitis (ME)''', sometimes referred to as '''chronic fatigue syndrome (CFS)''' is a serious and long-term illness. The hallmark symptom is '''[[post-exertional malaise]] (PEM)''', a marked worsening of the illness after exertion. People with ME/CFS experience debilitating [[fatigue]], non-refreshing sleep, and problems with memory or concentration. Other common symptoms include pain, gut issues, sensitivity to light and sound, and [[orthostatic intolerance]].

{{Table of contents}}

== '''Correct representation of ME/CFS''' ==

=== '''Not chronic fatigue''' ===
ME/CFS is not the same as [[chronic fatigue]] and it is important not to confuse these terms. Chronic fatigue is a symptom present in numerous conditions, such as diabetes and depression. Chronic fatigue syndrome (CFS or ME/CFS) is a disorder which includes chronic fatigue as a symptom, but this is only one of several symptoms that describe the disorder.

Most people with chronic fatigue do not meet ME/CFS diagnostic criteria<ref name=":0">{{Cite journal|title=A community-based study of chronic fatigue syndrome|date=1999-10-11|url=https://pubmed.ncbi.nlm.nih.gov/10527290/|journal=Archives of Internal Medicine|volume=159|issue=18|pages=2129–2137|last=Jason|first=L. A.|last2=Richman|first2=J. A.|last3=Rademaker|first3=A. W.|last4=Jordan|first4=K. M.|last5=Plioplys|first5=A. V.|last6=Taylor|first6=R. R.|last7=McCready|first7=W.|last8=Huang|first8=C. F.|last9=Plioplys|first9=S.|doi=10.1001/archinte.159.18.2129|pmid=10527290|issn=0003-9926}}</ref>, and for many ME/CFS patients, chronic fatigue is not their most debilitating symptom. For these reasons, it is inaccurate to shorten ME/CFS to ‘chronic fatigue’ in the body of an article or its headline.

=== '''Representative images''' ===
The quality of life of persons with ME/CFS is severely reduced. The National Academy of Medicine estimates that at least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.<ref name=":2">{{Cite book|title=Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|url=http://www.ncbi.nlm.nih.gov/books/NBK274235/|publisher=National Academies Press (US)|date=2015|location=Washington (DC)|isbn=978-0-309-31689-7|pmid=25695122|series=The National Academies Collection: Reports funded by National Institutes of Health|last=Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome|last2=Board on the Health of Select Populations|last3=Institute of Medicine}}</ref> Functional impairment of ME/CFS can be greater than in disabling conditions such as [[multiple sclerosis]]<ref>{{Cite journal|title=Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls|date=2018-12|url=https://pubmed.ncbi.nlm.nih.gov/29536371/|journal=PharmacoEconomics - Open|volume=2|issue=4|pages=381–392|last=Kingdon|first=Caroline C.|last2=Bowman|first2=Erinna W.|last3=Curran|first3=Hayley|last4=Nacul|first4=Luis|last5=Lacerda|first5=Eliana M.|doi=10.1007/s41669-018-0071-6|pmc=6249197|pmid=29536371|issn=2509-4254}}</ref>, [[rheumatoid arthritis]]<ref>{{Cite journal|title=The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)|date=2015|url=https://pubmed.ncbi.nlm.nih.gov/26147503/|journal=PloS One|volume=10|issue=7|pages=e0132421|last=Falk Hvidberg|first=Michael|last2=Brinth|first2=Louise Schouborg|last3=Olesen|first3=Anne V.|last4=Petersen|first4=Karin D.|last5=Ehlers|first5=Lars|doi=10.1371/journal.pone.0132421|pmc=4492975|pmid=26147503|issn=1932-6203}}</ref> or congestive heart failure.<ref>{{Cite journal|title=Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups|date=1996-09|url=https://pubmed.ncbi.nlm.nih.gov/8873490/|journal=The American Journal of Medicine|volume=101|issue=3|pages=281–290|last=Komaroff|first=A. L.|last2=Fagioli|first2=L. R.|last3=Doolittle|first3=T. H.|last4=Gandek|first4=B.|last5=Gleit|first5=M. A.|last6=Guerriero|first6=R. T.|last7=Kornish|first7=R. J.|last8=Ware|first8=N. C.|last9=Ware|first9=J. E.|last10=Bates|first10=D. W.|doi=10.1016/S0002-9343(96)00174-X|pmid=8873490|issn=0002-9343}}</ref>

Most patients with ME/CFS can no longer work or study and are forced to reduce their social activities.<ref>{{Cite journal|title=The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database|date=2011-09-15|url=https://doi.org/10.1186/1472-6963-11-217|journal=BMC Health Services Research|volume=11|issue=1|pages=217|last=Collin|first=Simon M.|last2=Crawley|first2=Esther|last3=May|first3=Margaret T.|last4=Sterne|first4=Jonathan AC|last5=Hollingworth|first5=William|last6=UK CFS/ME National Outcomes Database|doi=10.1186/1472-6963-11-217|pmc=PMC3184626|pmid=21923897|issn=1472-6963}}</ref><ref>{{Cite journal|title=The economic impact of chronic fatigue syndrome|date=2004-06-21|url=https://doi.org/10.1186/1478-7547-2-4|journal=Cost Effectiveness and Resource Allocation|volume=2|issue=1|pages=4|last=Reynolds|first=Kenneth J.|last2=Vernon|first2=Suzanne D.|last3=Bouchery|first3=Ellen|last4=Reeves|first4=William C.|language=en|doi=10.1186/1478-7547-2-4|pmc=PMC449736|pmid=15210053|issn=1478-7547}}</ref> It is therefore inappropriate to use stock images of models in business clothing who are yawning or looking fatigued. This is not a good representation of ME/CFS.

The German association ‘Deutsche Gesellschaft für ME/CFS’ has provided [https://www.mecfs.de/stockphotos/ 32 professional photos for press use] that adequately depict the reality of people living with ME/CFS.

=== '''Not a mental disorder''' ===
Because there is no biomarker or diagnostic test, ME/CFS was incorrectly believed to be a mental disorder, an illness without disease, or a collection of symptoms that are ‘all in the mind’.<ref>{{Cite journal|title=Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients|date=2024-01|url=https://www.mdpi.com/1648-9144/60/1/83|journal=Medicina|volume=60|issue=1|pages=83|last=Thoma|first=Manuel|last2=Froehlich|first2=Laura|last3=Hattesohl|first3=Daniel B. R.|last4=Quante|first4=Sonja|last5=Jason|first5=Leonard A.|last6=Scheibenbogen|first6=Carmen|language=en|doi=10.3390/medicina60010083|pmc=10819994|pmid=38256344|issn=1648-9144}}</ref><ref>{{Cite journal|title=Ethical classification of ME/CFS in the United Kingdom|date=2019-07|url=https://pubmed.ncbi.nlm.nih.gov/30734339/|journal=Bioethics|volume=33|issue=6|pages=716–722|last=O'Leary|first=Diane|doi=10.1111/bioe.12559|pmid=30734339|issn=1467-8519}}</ref> This view is in contrast with scientific evidence and expert opinion.<ref name=":3">{{Cite journal|title=Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome|date=2019-08-13|url=https://pubmed.ncbi.nlm.nih.gov/31276153/|journal=JAMA|volume=322|issue=6|pages=499–500|last=Komaroff|first=Anthony L.|doi=10.1001/jama.2019.8312|pmid=31276153|issn=1538-3598}}</ref> The [[Centers for Disease Control and Prevention]] (CDC), for example, states: ''"ME/CFS is a biological illness, not a psychologic disorder.”''<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html|title=Clinical Overview of ME/CFS|last=CDC|date=2024-05-10|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> The [[World Health Organization]] classifies ME and CFS as Diseases of the Nervous System, using code 8E49 Postviral fatigue syndrome in the International Classification of Diseases.<ref>{{Cite web|url=https://icd.who.int/browse/2024-01/mms/en#569175314|title=ICD-11 for Mortality and Morbidity Statistics|website=icd.who.int|access-date=2024-06-06}}</ref>

== Basic facts about ME/CFS ==

=== '''Epidemiology''' ===
ME/CFS affects approximately 0.4% of the population or 1 in 250 people.<ref name=":0" /><ref name=":1">{{Cite journal|title=Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)|date=2020-02-24|url=https://pubmed.ncbi.nlm.nih.gov/32093722/|journal=Journal of Translational Medicine|volume=18|issue=1|pages=100|last=Lim|first=Eun-Jin|last2=Ahn|first2=Yo-Chan|last3=Jang|first3=Eun-Su|last4=Lee|first4=Si-Woo|last5=Lee|first5=Su-Hwa|last6=Son|first6=Chang-Gue|doi=10.1186/s12967-020-02269-0|pmc=7038594|pmid=32093722|issn=1479-5876}}</ref> The illness is much more common in women than in men: approximately 75% of patients are female.<ref name=":0" /><ref name=":1" /><ref name=":4">{{Cite journal|title=Typing myalgic encephalomyelitis by infection at onset: A DecodeME study|date=2023|url=https://pubmed.ncbi.nlm.nih.gov/37881452/|journal=NIHR open research|volume=3|pages=20|last=Bretherick|first=Andrew D.|last2=McGrath|first2=Simon J.|last3=Devereux-Cooke|first3=Andy|last4=Leary|first4=Sian|last5=Northwood|first5=Emma|last6=Redshaw|first6=Anna|last7=Stacey|first7=Pippa|last8=Tripp|first8=Claire|last9=Wilson|first9=Jim|last10=Chowdhury|first10=Sonya|last11=Lewis|first11=Isabel|doi=10.3310/nihropenres.13421.4|pmc=10593357|pmid=37881452|issn=2633-4402}}</ref> Although ME/CFS can affect people at any age, it is most common in people between the ages of 40-60 years.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/about/fast-facts-about-me-cfs.html|title=Fast Facts: ME/CFS|last=CDC|date=2024-05-31|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref>

=== '''Cause and pathology''' ===
The cause and pathology of ME/CFS remain largely unknown.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/causes/index.html|title=What Causes ME/CFS Causes|last=CDC|date=2024-06-04|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> Infections are considered a risk factor. Longitudinal studies have shown that infectious diseases such as mononucleosis increase the chances of developing ME/CFS.<ref>{{Cite journal|title=Chronic fatigue syndrome after infectious mononucleosis in adolescents|date=2009-07|url=https://pubmed.ncbi.nlm.nih.gov/19564299/|journal=Pediatrics|volume=124|issue=1|pages=189–193|last=Katz|first=Ben Z.|last2=Shiraishi|first2=Yukiko|last3=Mears|first3=Cynthia J.|last4=Binns|first4=Helen J.|last5=Taylor|first5=Renee|doi=10.1542/peds.2008-1879|pmc=2756827|pmid=19564299|issn=1098-4275}}</ref><ref>{{Cite journal|title=Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever|date=1998-12|url=https://pubmed.ncbi.nlm.nih.gov/9926075/|journal=The British Journal of Psychiatry: The Journal of Mental Science|volume=173|pages=475–481|last=White|first=P. D.|last2=Thomas|first2=J. M.|last3=Amess|first3=J.|last4=Crawford|first4=D. H.|last5=Grover|first5=S. A.|last6=Kangro|first6=H. O.|last7=Clare|first7=A. W.|doi=10.1192/bjp.173.6.475|pmid=9926075|issn=0007-1250}}</ref> Increased incidence has also been reported following [[Q fever|Q-fever]], [[Ross River virus|Ross River Virus]], [[giardiasis]], and several other infections.<ref>{{Cite journal|title=Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study|date=2006-09-16|url=https://pubmed.ncbi.nlm.nih.gov/16950834/|journal=BMJ (Clinical research ed.)|volume=333|issue=7568|pages=575|last=Hickie|first=Ian|last2=Davenport|first2=Tracey|last3=Wakefield|first3=Denis|last4=Vollmer-Conna|first4=Ute|last5=Cameron|first5=Barbara|last6=Vernon|first6=Suzanne D.|last7=Reeves|first7=William C.|last8=Lloyd|first8=Andrew|last9=Dubbo Infection Outcomes Study Group|doi=10.1136/bmj.38933.585764.AE|pmc=1569956|pmid=16950834|issn=1756-1833}}</ref> Contracting [[Severe acute respiratory syndrome coronavirus 2|SARS-CoV-2]], the virus responsible for the [[COVID-19|COVID]] pandemic, leads to a higher risk of ME/CFS, and a substantial proportion of patients with [[Long COVID]] meet ME/CFS diagnostic criteria.<ref>{{Cite journal|title=Unexplained post-acute infection syndromes|date=2022-05|url=https://www.nature.com/articles/s41591-022-01810-6|journal=Nature Medicine|volume=28|issue=5|pages=911–923|last=Choutka|first=Jan|last2=Jansari|first2=Viraj|last3=Hornig|first3=Mady|last4=Iwasaki|first4=Akiko|language=en|doi=10.1038/s41591-022-01810-6|issn=1546-170X}}</ref><ref>{{Cite journal|title=The risks of autoimmune- and inflammatory post-acute COVID-19 conditions: a network cohort study in six European countries, the US, and Korea|date=2024-05-15|url=https://www.medrxiv.org/content/10.1101/2024.05.15.24307344v1|pages=2024.05.15.24307344|last=Burkard|first=Theresa|last2=López-Güell|first2=Kim|last3=Català|first3=Martí|last4=Burn|first4=Edward|last5=Delmestri|first5=Antonella|last6=Khalid|first6=Sara|last7=Joedicke|first7=Annika M.|last8=Dedman|first8=Daniel|last9=Oyinlola|first9=Jessie O.|last10=Abellan|first10=Alicia|last11=Pérez-Crespo|first11=Laura|language=en|doi=10.1101/2024.05.15.24307344v1.supplementary-material}}</ref><ref>{{Cite journal|title=A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity|date=2022-08-30|url=https://pubmed.ncbi.nlm.nih.gov/36042189/|journal=Nature Communications|volume=13|issue=1|pages=5104|last=Kedor|first=Claudia|last2=Freitag|first2=Helma|last3=Meyer-Arndt|first3=Lil|last4=Wittke|first4=Kirsten|last5=Hanitsch|first5=Leif G.|last6=Zoller|first6=Thomas|last7=Steinbeis|first7=Fridolin|last8=Haffke|first8=Milan|last9=Rudolf|first9=Gordon|last10=Heidecker|first10=Bettina|last11=Bobbert|first11=Thomas|doi=10.1038/s41467-022-32507-6|pmc=9426365|pmid=36042189|issn=2041-1723}}</ref>

ME/CFS is suspected to have a genetic component.<ref>{{Cite journal|title=Genetic risk factors of ME/CFS: a critical review|date=2020-09-30|url=https://pubmed.ncbi.nlm.nih.gov/32744306/|journal=Human Molecular Genetics|volume=29|issue=R1|pages=R117–R124|last=Dibble|first=Joshua J.|last2=McGrath|first2=Simon J.|last3=Ponting|first3=Chris P.|doi=10.1093/hmg/ddaa169|pmc=7530519|pmid=32744306|issn=1460-2083}}</ref> The [[DecodeME|DecodeME project]] in the UK has collected samples of more than 20,000 ME/CFS patients to perform a genome-wide analysis.<ref name=":4" />

Researchers have reported abnormalities in the [[immune system]], [[Metabolic|metabolism]], [[cardiovascular system]], brain signalling, [[Endothelial dysfunction|endothelial function]], and other bodily functions of ME/CFS patients.<ref name=":2" /><ref name=":3" /> However, most of these findings are not specific to ME/CFS (they are also found in other conditions) or have not been replicated by multiple research groups.

=== '''Treatment''' ===
There are no [[U.S. Food and Drug Administration|Food and Drug Administration]] (FDA) or [[European Medicines Agency]] (EMA) approved treatments for ME/CFS. Physicians aim to reduce the impact of ME/CFS by managing or treating individual symptoms. The [[EUROMENE|European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (EUROMENE) and the US Clinician's Coalition have issued guidelines and advice on symptom management.

In the past, [[graded exercise therapy]] (GET) was a popular treatment for ME/CFS. This was based on the idea that ME/CFS is perpetuated by deconditioning and avoidance of activity. In randomized trials, however, GET failed to increase employment rates and fitness levels of ME/CFS patients. Multiple reviews have evaluated the evidence supporting GET as low quality. In surveys, ME/CFS patients reported a worsening of their health following GET. The [[National Institute for Health and Care Excellence]] (NICE) therefore actively recommends against GET and other exercise programs for ME/CFS.

[[Cognitive behavioral therapy]] (CBT) may be offered to people with a new ME/CFS diagnosis to help them cope with the disease. CBT that assumes patients have 'abnormal' illness beliefs and behaviors as an underlying cause of their ME/CFS is no longer recommended by NICE.

Surveys indicate that ME/CFS patients often find [[pacing]] useful. Pacing is a self-management strategy where activities are dosed so that patients can remain as active as possible without causing post-exertional malaise.

== Advocacy ==

=== '''Psychosomatic theories and stigma''' ===
Because blood tests often return normal and most patients are women, ME/CFS has historically been minimalized. The illness has inappropriately been called ‘[[Yuppie Flu|yuppie flu]]’ and was once dismissed as [[hysteria]]. Patients have reported harm from [[Psychosomatic illness|psychosomatic theories]] that assume ME/CFS to be caused by abnormal illness beliefs and excessive resting behavior. This has been considered a barrier to appropriate patient care.
[[File:NIH funding.png|[https://report.nih.gov/funding/categorical-spending#/ Research funding by National Institutes of Health (NIH) for ME/CFS and similar illness categories.]|thumb|800x800px]]

=== High disease burden, low funding ===
Economic costs due to ME/CFS are high. In the United States, estimates range from $36 to $51 billion per year, considering both lost wages and healthcare costs. In Europe, the illness has been estimated to affect up to 2.2% of the population<ref>{{Cite journal|title=Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology|date=2020-05-21|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7290765/|journal=Journal of Clinical Medicine|volume=9|issue=5|pages=1557|last=Estévez-López|first=Fernando|last2=Mudie|first2=Kathleen|last3=Wang-Steverding|first3=Xia|last4=Bakken|first4=Inger Johanne|last5=Ivanovs|first5=Andrejs|last6=Castro-Marrero|first6=Jesús|last7=Nacul|first7=Luis|last8=Alegre|first8=Jose|last9=Zalewski|first9=Paweł|last10=Słomko|first10=Joanna|last11=Strand|first11=Elin Bolle|doi=10.3390/jcm9051557|pmc=7290765|pmid=32455633|issn=2077-0383}}</ref> and the annual burden of ME/CFS is estimated to be 40 billion euros annually.{{Citation needed|reason=Annual euro amount|date=7 June 2024}}

Despite its high disease burden, research on ME/CFS remains underfunded. One analysis of NIH funding found that ME/CFS research only receives 7% of the amount commensurate with its disease burden. A study contracted by the European Commission also identified ME/CFS as a high-burden, under-researched medical condition.

=== '''12 May: World ME Day''' ===
ME/CFS organizations have advocated against stigma and for more recognition of the illness in research and the healthcare system. On 12 May, World ME/CFS Day, various awareness events are organized worldwide to highlight the millions of ME/CFS patients who have disappeared from public life because of their illness. These are often called ‘Millions Missing’ events, a campaign coordinated by the US-based [[The MEAction Network|ME Action Network]].

== Resources ==

=== '''Reports and guidelines''' ===

* National Academy of Medicine (NAM). [https://pubmed.ncbi.nlm.nih.gov/25695122/ Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness], 2015.
* National Institute for Health and Care Excellence (NICE). [https://www.nice.org.uk/guidance/ng206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management]. NICE guideline [NG206]. 29 October 2021.
* Institute for Quality and Efficiency in Health Care (IQWiG). [https://www.iqwig.de/en/presse/press-releases/press-releases-detailpage_93184.html ME/CFS: The current state of knowledge]. 15 May 2013.
* Centers for Disease Control and Prevention (CDC). [https://www.cdc.gov/me-cfs/about/index.html#:~:text=Myalgic%20encephalomyelitis%2Fchronic%20fatigue%20syndrome%20(ME%2FCFS)%20is,no%20known%20cause%20or%20cure. ME/CFS Basics]. 10 May 2024.

=== '''Patient organizations''' ===

* [https://worldmealliance.org/ World ME Alliance]
* [https://www.meaction.net/ ME Action Network]
* [https://meassociation.org.uk/ The ME Association]
* [https://www.mecfs.de/ Deutsche Gesellschaft für ME/CFS.]
* [https://www.europeanmealliance.org/index.shtml European ME Alliance]

=== '''ME/CFS experts''' ===

* [[Luis Nacul]]
* [[Carmen Scheibenbogen]]
* [[Lucinda Bateman]]
* [[Nancy Klimas]]
* [[Anthony Komaroff]]
* [[Chris Ponting]]
* [[Karl Tronstad]]

=== '''Examples of excellent reporting''' ===

* George Monbiot. ‘[https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal.] The Guardian, 12 march 2024.
* Ed Yong. [https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/ Fatigue Can Shatter a Person]. The Atlantic, 27 July 2023.
* David Tuller. [https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/ When the doctor doesn’t listen]. Coda, 27 Januari 2023.

== References ==

Draft:Primer for Journalists

2024-06-08T03:13:54Z

Forestglip:/* Not chronic fatigue */ added some details about chronic fatigue vs. CFS

:When this page is edited, please update the [[:Category:Primers|other primers]] to keep them in sync (if that section is included in the other primers). Thank you for your many recent edits! ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 14:11, June 6, 2024 (UTC)

''Note: This page is currently being discussed [https://www.s4me.info/threads/the-mepedia-primer-for-journalists.38819/ here].''

'''Myalgic encephalomyelitis (ME)''', sometimes referred to as '''chronic fatigue syndrome (CFS)''' is a serious and long-term illness. The hallmark symptom is '''[[post-exertional malaise]] (PEM)''', a marked worsening of the illness after exertion. People with ME/CFS experience debilitating [[fatigue]], non-refreshing sleep, and problems with memory or concentration. Other common symptoms include pain, gut issues, sensitivity to light and sound, and [[orthostatic intolerance]].

{{Table of contents}}

== '''Correct representation of ME/CFS''' ==

=== '''Not chronic fatigue''' ===
ME/CFS is not the same as [[chronic fatigue]] and it is important not to confuse these. Chronic fatigue is a symptom present in numerous conditions, such as diabetes and depression. Chronic fatigue syndrome (CFS or ME/CFS) is a disorder which includes chronic fatigue as a symptom, but this is only one of several symptoms that describe the disorder.

Most people with chronic fatigue do not meet ME/CFS diagnostic criteria<ref name=":0">{{Cite journal|title=A community-based study of chronic fatigue syndrome|date=1999-10-11|url=https://pubmed.ncbi.nlm.nih.gov/10527290/|journal=Archives of Internal Medicine|volume=159|issue=18|pages=2129–2137|last=Jason|first=L. A.|last2=Richman|first2=J. A.|last3=Rademaker|first3=A. W.|last4=Jordan|first4=K. M.|last5=Plioplys|first5=A. V.|last6=Taylor|first6=R. R.|last7=McCready|first7=W.|last8=Huang|first8=C. F.|last9=Plioplys|first9=S.|doi=10.1001/archinte.159.18.2129|pmid=10527290|issn=0003-9926}}</ref>, and for many ME/CFS patients, chronic fatigue is not their most debilitating symptom. For these reasons, it is inaccurate to shorten ME/CFS to ‘chronic fatigue’ in the body of an article or its headline.

=== '''Representative images''' ===
The quality of life of persons with ME/CFS is severely reduced. The National Academy of Medicine estimates that at least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.<ref name=":2">{{Cite book|title=Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|url=http://www.ncbi.nlm.nih.gov/books/NBK274235/|publisher=National Academies Press (US)|date=2015|location=Washington (DC)|isbn=978-0-309-31689-7|pmid=25695122|series=The National Academies Collection: Reports funded by National Institutes of Health|last=Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome|last2=Board on the Health of Select Populations|last3=Institute of Medicine}}</ref> Functional impairment of ME/CFS can be greater than in disabling conditions such as [[multiple sclerosis]]<ref>{{Cite journal|title=Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls|date=2018-12|url=https://pubmed.ncbi.nlm.nih.gov/29536371/|journal=PharmacoEconomics - Open|volume=2|issue=4|pages=381–392|last=Kingdon|first=Caroline C.|last2=Bowman|first2=Erinna W.|last3=Curran|first3=Hayley|last4=Nacul|first4=Luis|last5=Lacerda|first5=Eliana M.|doi=10.1007/s41669-018-0071-6|pmc=6249197|pmid=29536371|issn=2509-4254}}</ref>, [[rheumatoid arthritis]]<ref>{{Cite journal|title=The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)|date=2015|url=https://pubmed.ncbi.nlm.nih.gov/26147503/|journal=PloS One|volume=10|issue=7|pages=e0132421|last=Falk Hvidberg|first=Michael|last2=Brinth|first2=Louise Schouborg|last3=Olesen|first3=Anne V.|last4=Petersen|first4=Karin D.|last5=Ehlers|first5=Lars|doi=10.1371/journal.pone.0132421|pmc=4492975|pmid=26147503|issn=1932-6203}}</ref> or congestive heart failure.<ref>{{Cite journal|title=Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups|date=1996-09|url=https://pubmed.ncbi.nlm.nih.gov/8873490/|journal=The American Journal of Medicine|volume=101|issue=3|pages=281–290|last=Komaroff|first=A. L.|last2=Fagioli|first2=L. R.|last3=Doolittle|first3=T. H.|last4=Gandek|first4=B.|last5=Gleit|first5=M. A.|last6=Guerriero|first6=R. T.|last7=Kornish|first7=R. J.|last8=Ware|first8=N. C.|last9=Ware|first9=J. E.|last10=Bates|first10=D. W.|doi=10.1016/S0002-9343(96)00174-X|pmid=8873490|issn=0002-9343}}</ref>

Most patients with ME/CFS can no longer work or study and are forced to reduce their social activities.<ref>{{Cite journal|title=The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database|date=2011-09-15|url=https://doi.org/10.1186/1472-6963-11-217|journal=BMC Health Services Research|volume=11|issue=1|pages=217|last=Collin|first=Simon M.|last2=Crawley|first2=Esther|last3=May|first3=Margaret T.|last4=Sterne|first4=Jonathan AC|last5=Hollingworth|first5=William|last6=UK CFS/ME National Outcomes Database|doi=10.1186/1472-6963-11-217|pmc=PMC3184626|pmid=21923897|issn=1472-6963}}</ref><ref>{{Cite journal|title=The economic impact of chronic fatigue syndrome|date=2004-06-21|url=https://doi.org/10.1186/1478-7547-2-4|journal=Cost Effectiveness and Resource Allocation|volume=2|issue=1|pages=4|last=Reynolds|first=Kenneth J.|last2=Vernon|first2=Suzanne D.|last3=Bouchery|first3=Ellen|last4=Reeves|first4=William C.|language=en|doi=10.1186/1478-7547-2-4|pmc=PMC449736|pmid=15210053|issn=1478-7547}}</ref> It is therefore inappropriate to use stock images of models in business clothing who are yawning or looking fatigued. This is not a good representation of ME/CFS.

The German association ‘Deutsche Gesellschaft für ME/CFS’ has provided [https://www.mecfs.de/stockphotos/ 32 professional photos for press use] that adequately depict the reality of people living with ME/CFS.

=== '''Not a mental disorder''' ===
Because there is no biomarker or diagnostic test, ME/CFS was incorrectly believed to be a mental disorder, an illness without disease, or a collection of symptoms that are ‘all in the mind’.<ref>{{Cite journal|title=Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients|date=2024-01|url=https://www.mdpi.com/1648-9144/60/1/83|journal=Medicina|volume=60|issue=1|pages=83|last=Thoma|first=Manuel|last2=Froehlich|first2=Laura|last3=Hattesohl|first3=Daniel B. R.|last4=Quante|first4=Sonja|last5=Jason|first5=Leonard A.|last6=Scheibenbogen|first6=Carmen|language=en|doi=10.3390/medicina60010083|pmc=10819994|pmid=38256344|issn=1648-9144}}</ref><ref>{{Cite journal|title=Ethical classification of ME/CFS in the United Kingdom|date=2019-07|url=https://pubmed.ncbi.nlm.nih.gov/30734339/|journal=Bioethics|volume=33|issue=6|pages=716–722|last=O'Leary|first=Diane|doi=10.1111/bioe.12559|pmid=30734339|issn=1467-8519}}</ref> This view is in contrast with scientific evidence and expert opinion.<ref name=":3">{{Cite journal|title=Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome|date=2019-08-13|url=https://pubmed.ncbi.nlm.nih.gov/31276153/|journal=JAMA|volume=322|issue=6|pages=499–500|last=Komaroff|first=Anthony L.|doi=10.1001/jama.2019.8312|pmid=31276153|issn=1538-3598}}</ref> The [[Centers for Disease Control and Prevention]] (CDC), for example, states: ''"ME/CFS is a biological illness, not a psychologic disorder.”''<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html|title=Clinical Overview of ME/CFS|last=CDC|date=2024-05-10|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> The [[World Health Organization]] classifies ME and CFS as Diseases of the Nervous System, using code 8E49 Postviral fatigue syndrome in the International Classification of Diseases.<ref>{{Cite web|url=https://icd.who.int/browse/2024-01/mms/en#569175314|title=ICD-11 for Mortality and Morbidity Statistics|website=icd.who.int|access-date=2024-06-06}}</ref>

== Basic facts about ME/CFS ==

=== '''Epidemiology''' ===
ME/CFS affects approximately 0.4% of the population or 1 in 250 people.<ref name=":0" /><ref name=":1">{{Cite journal|title=Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)|date=2020-02-24|url=https://pubmed.ncbi.nlm.nih.gov/32093722/|journal=Journal of Translational Medicine|volume=18|issue=1|pages=100|last=Lim|first=Eun-Jin|last2=Ahn|first2=Yo-Chan|last3=Jang|first3=Eun-Su|last4=Lee|first4=Si-Woo|last5=Lee|first5=Su-Hwa|last6=Son|first6=Chang-Gue|doi=10.1186/s12967-020-02269-0|pmc=7038594|pmid=32093722|issn=1479-5876}}</ref> The illness is much more common in women than in men: approximately 75% of patients are female.<ref name=":0" /><ref name=":1" /><ref name=":4">{{Cite journal|title=Typing myalgic encephalomyelitis by infection at onset: A DecodeME study|date=2023|url=https://pubmed.ncbi.nlm.nih.gov/37881452/|journal=NIHR open research|volume=3|pages=20|last=Bretherick|first=Andrew D.|last2=McGrath|first2=Simon J.|last3=Devereux-Cooke|first3=Andy|last4=Leary|first4=Sian|last5=Northwood|first5=Emma|last6=Redshaw|first6=Anna|last7=Stacey|first7=Pippa|last8=Tripp|first8=Claire|last9=Wilson|first9=Jim|last10=Chowdhury|first10=Sonya|last11=Lewis|first11=Isabel|doi=10.3310/nihropenres.13421.4|pmc=10593357|pmid=37881452|issn=2633-4402}}</ref> Although ME/CFS can affect people at any age, it is most common in people between the ages of 40-60 years.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/about/fast-facts-about-me-cfs.html|title=Fast Facts: ME/CFS|last=CDC|date=2024-05-31|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref>

=== '''Cause and pathology''' ===
The cause and pathology of ME/CFS remain largely unknown.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/causes/index.html|title=What Causes ME/CFS Causes|last=CDC|date=2024-06-04|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> Infections are considered a risk factor. Longitudinal studies have shown that infectious diseases such as mononucleosis increase the chances of developing ME/CFS.<ref>{{Cite journal|title=Chronic fatigue syndrome after infectious mononucleosis in adolescents|date=2009-07|url=https://pubmed.ncbi.nlm.nih.gov/19564299/|journal=Pediatrics|volume=124|issue=1|pages=189–193|last=Katz|first=Ben Z.|last2=Shiraishi|first2=Yukiko|last3=Mears|first3=Cynthia J.|last4=Binns|first4=Helen J.|last5=Taylor|first5=Renee|doi=10.1542/peds.2008-1879|pmc=2756827|pmid=19564299|issn=1098-4275}}</ref><ref>{{Cite journal|title=Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever|date=1998-12|url=https://pubmed.ncbi.nlm.nih.gov/9926075/|journal=The British Journal of Psychiatry: The Journal of Mental Science|volume=173|pages=475–481|last=White|first=P. D.|last2=Thomas|first2=J. M.|last3=Amess|first3=J.|last4=Crawford|first4=D. H.|last5=Grover|first5=S. A.|last6=Kangro|first6=H. O.|last7=Clare|first7=A. W.|doi=10.1192/bjp.173.6.475|pmid=9926075|issn=0007-1250}}</ref> Increased incidence has also been reported following [[Q fever|Q-fever]], [[Ross River virus|Ross River Virus]], [[giardiasis]], and several other infections.<ref>{{Cite journal|title=Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study|date=2006-09-16|url=https://pubmed.ncbi.nlm.nih.gov/16950834/|journal=BMJ (Clinical research ed.)|volume=333|issue=7568|pages=575|last=Hickie|first=Ian|last2=Davenport|first2=Tracey|last3=Wakefield|first3=Denis|last4=Vollmer-Conna|first4=Ute|last5=Cameron|first5=Barbara|last6=Vernon|first6=Suzanne D.|last7=Reeves|first7=William C.|last8=Lloyd|first8=Andrew|last9=Dubbo Infection Outcomes Study Group|doi=10.1136/bmj.38933.585764.AE|pmc=1569956|pmid=16950834|issn=1756-1833}}</ref> Contracting [[Severe acute respiratory syndrome coronavirus 2|SARS-CoV-2]], the virus responsible for the [[COVID-19|COVID]] pandemic, leads to a higher risk of ME/CFS, and a substantial proportion of patients with [[Long COVID]] meet ME/CFS diagnostic criteria.<ref>{{Cite journal|title=Unexplained post-acute infection syndromes|date=2022-05|url=https://www.nature.com/articles/s41591-022-01810-6|journal=Nature Medicine|volume=28|issue=5|pages=911–923|last=Choutka|first=Jan|last2=Jansari|first2=Viraj|last3=Hornig|first3=Mady|last4=Iwasaki|first4=Akiko|language=en|doi=10.1038/s41591-022-01810-6|issn=1546-170X}}</ref><ref>{{Cite journal|title=The risks of autoimmune- and inflammatory post-acute COVID-19 conditions: a network cohort study in six European countries, the US, and Korea|date=2024-05-15|url=https://www.medrxiv.org/content/10.1101/2024.05.15.24307344v1|pages=2024.05.15.24307344|last=Burkard|first=Theresa|last2=López-Güell|first2=Kim|last3=Català|first3=Martí|last4=Burn|first4=Edward|last5=Delmestri|first5=Antonella|last6=Khalid|first6=Sara|last7=Joedicke|first7=Annika M.|last8=Dedman|first8=Daniel|last9=Oyinlola|first9=Jessie O.|last10=Abellan|first10=Alicia|last11=Pérez-Crespo|first11=Laura|language=en|doi=10.1101/2024.05.15.24307344v1.supplementary-material}}</ref><ref>{{Cite journal|title=A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity|date=2022-08-30|url=https://pubmed.ncbi.nlm.nih.gov/36042189/|journal=Nature Communications|volume=13|issue=1|pages=5104|last=Kedor|first=Claudia|last2=Freitag|first2=Helma|last3=Meyer-Arndt|first3=Lil|last4=Wittke|first4=Kirsten|last5=Hanitsch|first5=Leif G.|last6=Zoller|first6=Thomas|last7=Steinbeis|first7=Fridolin|last8=Haffke|first8=Milan|last9=Rudolf|first9=Gordon|last10=Heidecker|first10=Bettina|last11=Bobbert|first11=Thomas|doi=10.1038/s41467-022-32507-6|pmc=9426365|pmid=36042189|issn=2041-1723}}</ref>

ME/CFS is suspected to have a genetic component.<ref>{{Cite journal|title=Genetic risk factors of ME/CFS: a critical review|date=2020-09-30|url=https://pubmed.ncbi.nlm.nih.gov/32744306/|journal=Human Molecular Genetics|volume=29|issue=R1|pages=R117–R124|last=Dibble|first=Joshua J.|last2=McGrath|first2=Simon J.|last3=Ponting|first3=Chris P.|doi=10.1093/hmg/ddaa169|pmc=7530519|pmid=32744306|issn=1460-2083}}</ref> The [[DecodeME|DecodeME project]] in the UK has collected samples of more than 20,000 ME/CFS patients to perform a genome-wide analysis.<ref name=":4" />

Researchers have reported abnormalities in the [[immune system]], [[Metabolic|metabolism]], [[cardiovascular system]], brain signalling, [[Endothelial dysfunction|endothelial function]], and other bodily functions of ME/CFS patients.<ref name=":2" /><ref name=":3" /> However, most of these findings are not specific to ME/CFS (they are also found in other conditions) or have not been replicated by multiple research groups.

=== '''Treatment''' ===
There are no [[U.S. Food and Drug Administration|Food and Drug Administration]] (FDA) or [[European Medicines Agency]] (EMA) approved treatments for ME/CFS. Physicians aim to reduce the impact of ME/CFS by managing or treating individual symptoms. The [[EUROMENE|European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (EUROMENE) and the US Clinician's Coalition have issued guidelines and advice on symptom management.

In the past, [[graded exercise therapy]] (GET) was a popular treatment for ME/CFS. This was based on the idea that ME/CFS is perpetuated by deconditioning and avoidance of activity. In randomized trials, however, GET failed to increase employment rates and fitness levels of ME/CFS patients. Multiple reviews have evaluated the evidence supporting GET as low quality. In surveys, ME/CFS patients reported a worsening of their health following GET. The [[National Institute for Health and Care Excellence]] (NICE) therefore actively recommends against GET and other exercise programs for ME/CFS.

[[Cognitive behavioral therapy]] (CBT) may be offered to people with a new ME/CFS diagnosis to help them cope with the disease. CBT that assumes patients have 'abnormal' illness beliefs and behaviors as an underlying cause of their ME/CFS is no longer recommended by NICE.

Surveys indicate that ME/CFS patients often find [[pacing]] useful. Pacing is a self-management strategy where activities are dosed so that patients can remain as active as possible without causing post-exertional malaise.

== Advocacy ==

=== '''Psychosomatic theories and stigma''' ===
Because blood tests often return normal and most patients are women, ME/CFS has historically been minimalized. The illness has inappropriately been called ‘[[Yuppie Flu|yuppie flu]]’ and was once dismissed as [[hysteria]]. Patients have reported harm from [[Psychosomatic illness|psychosomatic theories]] that assume ME/CFS to be caused by abnormal illness beliefs and excessive resting behavior. This has been considered a barrier to appropriate patient care.
[[File:NIH funding.png|[https://report.nih.gov/funding/categorical-spending#/ Research funding by National Institutes of Health (NIH) for ME/CFS and similar illness categories.]|thumb|800x800px]]

=== High disease burden, low funding ===
Economic costs due to ME/CFS are high. In the United States, estimates range from $36 to $51 billion per year, considering both lost wages and healthcare costs. In Europe, the illness has been estimated to affect up to 2.2% of the population<ref>{{Cite journal|title=Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology|date=2020-05-21|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7290765/|journal=Journal of Clinical Medicine|volume=9|issue=5|pages=1557|last=Estévez-López|first=Fernando|last2=Mudie|first2=Kathleen|last3=Wang-Steverding|first3=Xia|last4=Bakken|first4=Inger Johanne|last5=Ivanovs|first5=Andrejs|last6=Castro-Marrero|first6=Jesús|last7=Nacul|first7=Luis|last8=Alegre|first8=Jose|last9=Zalewski|first9=Paweł|last10=Słomko|first10=Joanna|last11=Strand|first11=Elin Bolle|doi=10.3390/jcm9051557|pmc=7290765|pmid=32455633|issn=2077-0383}}</ref> and the annual burden of ME/CFS is estimated to be 40 billion euros annually.{{Citation needed|reason=Annual euro amount|date=7 June 2024}}

Despite its high disease burden, research on ME/CFS remains underfunded. One analysis of NIH funding found that ME/CFS research only receives 7% of the amount commensurate with its disease burden. A study contracted by the European Commission also identified ME/CFS as a high-burden, under-researched medical condition.

=== '''12 May: World ME Day''' ===
ME/CFS organizations have advocated against stigma and for more recognition of the illness in research and the healthcare system. On 12 May, World ME/CFS Day, various awareness events are organized worldwide to highlight the millions of ME/CFS patients who have disappeared from public life because of their illness. These are often called ‘Millions Missing’ events, a campaign coordinated by the US-based [[The MEAction Network|ME Action Network]].

== Resources ==

=== '''Reports and guidelines''' ===

* National Academy of Medicine (NAM). [https://pubmed.ncbi.nlm.nih.gov/25695122/ Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness], 2015.
* National Institute for Health and Care Excellence (NICE). [https://www.nice.org.uk/guidance/ng206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management]. NICE guideline [NG206]. 29 October 2021.
* Institute for Quality and Efficiency in Health Care (IQWiG). [https://www.iqwig.de/en/presse/press-releases/press-releases-detailpage_93184.html ME/CFS: The current state of knowledge]. 15 May 2013.
* Centers for Disease Control and Prevention (CDC). [https://www.cdc.gov/me-cfs/about/index.html#:~:text=Myalgic%20encephalomyelitis%2Fchronic%20fatigue%20syndrome%20(ME%2FCFS)%20is,no%20known%20cause%20or%20cure. ME/CFS Basics]. 10 May 2024.

=== '''Patient organizations''' ===

* [https://worldmealliance.org/ World ME Alliance]
* [https://www.meaction.net/ ME Action Network]
* [https://meassociation.org.uk/ The ME Association]
* [https://www.mecfs.de/ Deutsche Gesellschaft für ME/CFS.]
* [https://www.europeanmealliance.org/index.shtml European ME Alliance]

=== '''ME/CFS experts''' ===

* [[Luis Nacul]]
* [[Carmen Scheibenbogen]]
* [[Lucinda Bateman]]
* [[Nancy Klimas]]
* [[Anthony Komaroff]]
* [[Chris Ponting]]
* [[Karl Tronstad]]

=== '''Examples of excellent reporting''' ===

* George Monbiot. ‘[https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal.] The Guardian, 12 march 2024.
* Ed Yong. [https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/ Fatigue Can Shatter a Person]. The Atlantic, 27 July 2023.
* David Tuller. [https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/ When the doctor doesn’t listen]. Coda, 27 Januari 2023.

== References ==

Draft:Primer for Journalists

2024-06-08T02:53:57Z

Forestglip:Removed "ME/CFS patients are severely ill, not fatigued." because it's a weird sentence that seems to imply ME/CFS patients are not fatigued, and people with chronic fatigue are not severely ill.

:When this page is edited, please update the [[:Category:Primers|other primers]] to keep them in sync (if that section is included in the other primers). Thank you for your many recent edits! ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 14:11, June 6, 2024 (UTC)

''Note: This page is currently being discussed [https://www.s4me.info/threads/the-mepedia-primer-for-journalists.38819/ here].''

'''Myalgic encephalomyelitis (ME)''', sometimes referred to as '''chronic fatigue syndrome (CFS)''' is a serious and long-term illness. The hallmark symptom is '''[[post-exertional malaise]] (PEM)''', a marked worsening of the illness after exertion. People with ME/CFS experience debilitating [[fatigue]], non-refreshing sleep, and problems with memory or concentration. Other common symptoms include pain, gut issues, sensitivity to light and sound, and [[orthostatic intolerance]].

{{Table of contents}}

== '''Correct representation of ME/CFS''' ==

=== '''Not chronic fatigue''' ===
ME/CFS is not the same as [[chronic fatigue]] and it is important not to confuse the conditions. Most people with chronic fatigue do not meet ME/CFS diagnostic criteria<ref name=":0">{{Cite journal|title=A community-based study of chronic fatigue syndrome|date=1999-10-11|url=https://pubmed.ncbi.nlm.nih.gov/10527290/|journal=Archives of Internal Medicine|volume=159|issue=18|pages=2129–2137|last=Jason|first=L. A.|last2=Richman|first2=J. A.|last3=Rademaker|first3=A. W.|last4=Jordan|first4=K. M.|last5=Plioplys|first5=A. V.|last6=Taylor|first6=R. R.|last7=McCready|first7=W.|last8=Huang|first8=C. F.|last9=Plioplys|first9=S.|doi=10.1001/archinte.159.18.2129|pmid=10527290|issn=0003-9926}}</ref>, and for many ME/CFS patients, fatigue is not their most debilitating symptom. It is therefore inaccurate to shorten ME/CFS to ‘chronic fatigue’ in the body of an article or its headline.

=== '''Representative images''' ===
The quality of life of persons with ME/CFS is severely reduced. The National Academy of Medicine estimates that at least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.<ref name=":2">{{Cite book|title=Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|url=http://www.ncbi.nlm.nih.gov/books/NBK274235/|publisher=National Academies Press (US)|date=2015|location=Washington (DC)|isbn=978-0-309-31689-7|pmid=25695122|series=The National Academies Collection: Reports funded by National Institutes of Health|last=Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome|last2=Board on the Health of Select Populations|last3=Institute of Medicine}}</ref> Functional impairment of ME/CFS can be greater than in disabling conditions such as [[multiple sclerosis]]<ref>{{Cite journal|title=Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls|date=2018-12|url=https://pubmed.ncbi.nlm.nih.gov/29536371/|journal=PharmacoEconomics - Open|volume=2|issue=4|pages=381–392|last=Kingdon|first=Caroline C.|last2=Bowman|first2=Erinna W.|last3=Curran|first3=Hayley|last4=Nacul|first4=Luis|last5=Lacerda|first5=Eliana M.|doi=10.1007/s41669-018-0071-6|pmc=6249197|pmid=29536371|issn=2509-4254}}</ref>, [[rheumatoid arthritis]]<ref>{{Cite journal|title=The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)|date=2015|url=https://pubmed.ncbi.nlm.nih.gov/26147503/|journal=PloS One|volume=10|issue=7|pages=e0132421|last=Falk Hvidberg|first=Michael|last2=Brinth|first2=Louise Schouborg|last3=Olesen|first3=Anne V.|last4=Petersen|first4=Karin D.|last5=Ehlers|first5=Lars|doi=10.1371/journal.pone.0132421|pmc=4492975|pmid=26147503|issn=1932-6203}}</ref> or congestive heart failure.<ref>{{Cite journal|title=Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups|date=1996-09|url=https://pubmed.ncbi.nlm.nih.gov/8873490/|journal=The American Journal of Medicine|volume=101|issue=3|pages=281–290|last=Komaroff|first=A. L.|last2=Fagioli|first2=L. R.|last3=Doolittle|first3=T. H.|last4=Gandek|first4=B.|last5=Gleit|first5=M. A.|last6=Guerriero|first6=R. T.|last7=Kornish|first7=R. J.|last8=Ware|first8=N. C.|last9=Ware|first9=J. E.|last10=Bates|first10=D. W.|doi=10.1016/S0002-9343(96)00174-X|pmid=8873490|issn=0002-9343}}</ref>

Most patients with ME/CFS can no longer work or study and are forced to reduce their social activities.<ref>{{Cite journal|title=The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database|date=2011-09-15|url=https://doi.org/10.1186/1472-6963-11-217|journal=BMC Health Services Research|volume=11|issue=1|pages=217|last=Collin|first=Simon M.|last2=Crawley|first2=Esther|last3=May|first3=Margaret T.|last4=Sterne|first4=Jonathan AC|last5=Hollingworth|first5=William|last6=UK CFS/ME National Outcomes Database|doi=10.1186/1472-6963-11-217|pmc=PMC3184626|pmid=21923897|issn=1472-6963}}</ref><ref>{{Cite journal|title=The economic impact of chronic fatigue syndrome|date=2004-06-21|url=https://doi.org/10.1186/1478-7547-2-4|journal=Cost Effectiveness and Resource Allocation|volume=2|issue=1|pages=4|last=Reynolds|first=Kenneth J.|last2=Vernon|first2=Suzanne D.|last3=Bouchery|first3=Ellen|last4=Reeves|first4=William C.|language=en|doi=10.1186/1478-7547-2-4|pmc=PMC449736|pmid=15210053|issn=1478-7547}}</ref> It is therefore inappropriate to use stock images of models in business clothing who are yawning or looking fatigued. This is not a good representation of ME/CFS.

The German association ‘Deutsche Gesellschaft für ME/CFS’ has provided [https://www.mecfs.de/stockphotos/ 32 professional photos for press use] that adequately depict the reality of people living with ME/CFS.

=== '''Not a mental disorder''' ===
Because there is no biomarker or diagnostic test, ME/CFS was incorrectly believed to be a mental disorder, an illness without disease, or a collection of symptoms that are ‘all in the mind’.<ref>{{Cite journal|title=Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients|date=2024-01|url=https://www.mdpi.com/1648-9144/60/1/83|journal=Medicina|volume=60|issue=1|pages=83|last=Thoma|first=Manuel|last2=Froehlich|first2=Laura|last3=Hattesohl|first3=Daniel B. R.|last4=Quante|first4=Sonja|last5=Jason|first5=Leonard A.|last6=Scheibenbogen|first6=Carmen|language=en|doi=10.3390/medicina60010083|pmc=10819994|pmid=38256344|issn=1648-9144}}</ref><ref>{{Cite journal|title=Ethical classification of ME/CFS in the United Kingdom|date=2019-07|url=https://pubmed.ncbi.nlm.nih.gov/30734339/|journal=Bioethics|volume=33|issue=6|pages=716–722|last=O'Leary|first=Diane|doi=10.1111/bioe.12559|pmid=30734339|issn=1467-8519}}</ref> This view is in contrast with scientific evidence and expert opinion.<ref name=":3">{{Cite journal|title=Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome|date=2019-08-13|url=https://pubmed.ncbi.nlm.nih.gov/31276153/|journal=JAMA|volume=322|issue=6|pages=499–500|last=Komaroff|first=Anthony L.|doi=10.1001/jama.2019.8312|pmid=31276153|issn=1538-3598}}</ref> The [[Centers for Disease Control and Prevention]] (CDC), for example, states: ''"ME/CFS is a biological illness, not a psychologic disorder.”''<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html|title=Clinical Overview of ME/CFS|last=CDC|date=2024-05-10|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> The [[World Health Organization]] classifies ME and CFS as Diseases of the Nervous System, using code 8E49 Postviral fatigue syndrome in the International Classification of Diseases.<ref>{{Cite web|url=https://icd.who.int/browse/2024-01/mms/en#569175314|title=ICD-11 for Mortality and Morbidity Statistics|website=icd.who.int|access-date=2024-06-06}}</ref>

== Basic facts about ME/CFS ==

=== '''Epidemiology''' ===
ME/CFS affects approximately 0.4% of the population or 1 in 250 people.<ref name=":0" /><ref name=":1">{{Cite journal|title=Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)|date=2020-02-24|url=https://pubmed.ncbi.nlm.nih.gov/32093722/|journal=Journal of Translational Medicine|volume=18|issue=1|pages=100|last=Lim|first=Eun-Jin|last2=Ahn|first2=Yo-Chan|last3=Jang|first3=Eun-Su|last4=Lee|first4=Si-Woo|last5=Lee|first5=Su-Hwa|last6=Son|first6=Chang-Gue|doi=10.1186/s12967-020-02269-0|pmc=7038594|pmid=32093722|issn=1479-5876}}</ref> The illness is much more common in women than in men: approximately 75% of patients are female.<ref name=":0" /><ref name=":1" /><ref name=":4">{{Cite journal|title=Typing myalgic encephalomyelitis by infection at onset: A DecodeME study|date=2023|url=https://pubmed.ncbi.nlm.nih.gov/37881452/|journal=NIHR open research|volume=3|pages=20|last=Bretherick|first=Andrew D.|last2=McGrath|first2=Simon J.|last3=Devereux-Cooke|first3=Andy|last4=Leary|first4=Sian|last5=Northwood|first5=Emma|last6=Redshaw|first6=Anna|last7=Stacey|first7=Pippa|last8=Tripp|first8=Claire|last9=Wilson|first9=Jim|last10=Chowdhury|first10=Sonya|last11=Lewis|first11=Isabel|doi=10.3310/nihropenres.13421.4|pmc=10593357|pmid=37881452|issn=2633-4402}}</ref> Although ME/CFS can affect people at any age, it is most common in people between the ages of 40-60 years.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/about/fast-facts-about-me-cfs.html|title=Fast Facts: ME/CFS|last=CDC|date=2024-05-31|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref>

=== '''Cause and pathology''' ===
The cause and pathology of ME/CFS remain largely unknown.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/causes/index.html|title=What Causes ME/CFS Causes|last=CDC|date=2024-06-04|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> Infections are considered a risk factor. Longitudinal studies have shown that infectious diseases such as mononucleosis increase the chances of developing ME/CFS.<ref>{{Cite journal|title=Chronic fatigue syndrome after infectious mononucleosis in adolescents|date=2009-07|url=https://pubmed.ncbi.nlm.nih.gov/19564299/|journal=Pediatrics|volume=124|issue=1|pages=189–193|last=Katz|first=Ben Z.|last2=Shiraishi|first2=Yukiko|last3=Mears|first3=Cynthia J.|last4=Binns|first4=Helen J.|last5=Taylor|first5=Renee|doi=10.1542/peds.2008-1879|pmc=2756827|pmid=19564299|issn=1098-4275}}</ref><ref>{{Cite journal|title=Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever|date=1998-12|url=https://pubmed.ncbi.nlm.nih.gov/9926075/|journal=The British Journal of Psychiatry: The Journal of Mental Science|volume=173|pages=475–481|last=White|first=P. D.|last2=Thomas|first2=J. M.|last3=Amess|first3=J.|last4=Crawford|first4=D. H.|last5=Grover|first5=S. A.|last6=Kangro|first6=H. O.|last7=Clare|first7=A. W.|doi=10.1192/bjp.173.6.475|pmid=9926075|issn=0007-1250}}</ref> Increased incidence has also been reported following [[Q fever|Q-fever]], [[Ross River virus|Ross River Virus]], [[giardiasis]], and several other infections.<ref>{{Cite journal|title=Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study|date=2006-09-16|url=https://pubmed.ncbi.nlm.nih.gov/16950834/|journal=BMJ (Clinical research ed.)|volume=333|issue=7568|pages=575|last=Hickie|first=Ian|last2=Davenport|first2=Tracey|last3=Wakefield|first3=Denis|last4=Vollmer-Conna|first4=Ute|last5=Cameron|first5=Barbara|last6=Vernon|first6=Suzanne D.|last7=Reeves|first7=William C.|last8=Lloyd|first8=Andrew|last9=Dubbo Infection Outcomes Study Group|doi=10.1136/bmj.38933.585764.AE|pmc=1569956|pmid=16950834|issn=1756-1833}}</ref> Contracting [[Severe acute respiratory syndrome coronavirus 2|SARS-CoV-2]], the virus responsible for the [[COVID-19|COVID]] pandemic, leads to a higher risk of ME/CFS, and a substantial proportion of patients with [[Long COVID]] meet ME/CFS diagnostic criteria.<ref>{{Cite journal|title=Unexplained post-acute infection syndromes|date=2022-05|url=https://www.nature.com/articles/s41591-022-01810-6|journal=Nature Medicine|volume=28|issue=5|pages=911–923|last=Choutka|first=Jan|last2=Jansari|first2=Viraj|last3=Hornig|first3=Mady|last4=Iwasaki|first4=Akiko|language=en|doi=10.1038/s41591-022-01810-6|issn=1546-170X}}</ref><ref>{{Cite journal|title=The risks of autoimmune- and inflammatory post-acute COVID-19 conditions: a network cohort study in six European countries, the US, and Korea|date=2024-05-15|url=https://www.medrxiv.org/content/10.1101/2024.05.15.24307344v1|pages=2024.05.15.24307344|last=Burkard|first=Theresa|last2=López-Güell|first2=Kim|last3=Català|first3=Martí|last4=Burn|first4=Edward|last5=Delmestri|first5=Antonella|last6=Khalid|first6=Sara|last7=Joedicke|first7=Annika M.|last8=Dedman|first8=Daniel|last9=Oyinlola|first9=Jessie O.|last10=Abellan|first10=Alicia|last11=Pérez-Crespo|first11=Laura|language=en|doi=10.1101/2024.05.15.24307344v1.supplementary-material}}</ref><ref>{{Cite journal|title=A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity|date=2022-08-30|url=https://pubmed.ncbi.nlm.nih.gov/36042189/|journal=Nature Communications|volume=13|issue=1|pages=5104|last=Kedor|first=Claudia|last2=Freitag|first2=Helma|last3=Meyer-Arndt|first3=Lil|last4=Wittke|first4=Kirsten|last5=Hanitsch|first5=Leif G.|last6=Zoller|first6=Thomas|last7=Steinbeis|first7=Fridolin|last8=Haffke|first8=Milan|last9=Rudolf|first9=Gordon|last10=Heidecker|first10=Bettina|last11=Bobbert|first11=Thomas|doi=10.1038/s41467-022-32507-6|pmc=9426365|pmid=36042189|issn=2041-1723}}</ref>

ME/CFS is suspected to have a genetic component.<ref>{{Cite journal|title=Genetic risk factors of ME/CFS: a critical review|date=2020-09-30|url=https://pubmed.ncbi.nlm.nih.gov/32744306/|journal=Human Molecular Genetics|volume=29|issue=R1|pages=R117–R124|last=Dibble|first=Joshua J.|last2=McGrath|first2=Simon J.|last3=Ponting|first3=Chris P.|doi=10.1093/hmg/ddaa169|pmc=7530519|pmid=32744306|issn=1460-2083}}</ref> The [[DecodeME|DecodeME project]] in the UK has collected samples of more than 20,000 ME/CFS patients to perform a genome-wide analysis.<ref name=":4" />

Researchers have reported abnormalities in the [[immune system]], [[Metabolic|metabolism]], [[cardiovascular system]], brain signalling, [[Endothelial dysfunction|endothelial function]], and other bodily functions of ME/CFS patients.<ref name=":2" /><ref name=":3" /> However, most of these findings are not specific to ME/CFS (they are also found in other conditions) or have not been replicated by multiple research groups.

=== '''Treatment''' ===
There are no [[U.S. Food and Drug Administration|Food and Drug Administration]] (FDA) or [[European Medicines Agency]] (EMA) approved treatments for ME/CFS. Physicians aim to reduce the impact of ME/CFS by managing or treating individual symptoms. The [[EUROMENE|European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (EUROMENE) and the US Clinician's Coalition have issued guidelines and advice on symptom management.

In the past, [[graded exercise therapy]] (GET) was a popular treatment for ME/CFS. This was based on the idea that ME/CFS is perpetuated by deconditioning and avoidance of activity. In randomized trials, however, GET failed to increase employment rates and fitness levels of ME/CFS patients. Multiple reviews have evaluated the evidence supporting GET as low quality. In surveys, ME/CFS patients reported a worsening of their health following GET. The [[National Institute for Health and Care Excellence]] (NICE) therefore actively recommends against GET and other exercise programs for ME/CFS.

[[Cognitive behavioral therapy]] (CBT) may be offered to people with a new ME/CFS diagnosis to help them cope with the disease. CBT that assumes patients have 'abnormal' illness beliefs and behaviors as an underlying cause of their ME/CFS is no longer recommended by NICE.

Surveys indicate that ME/CFS patients often find [[pacing]] useful. Pacing is a self-management strategy where activities are dosed so that patients can remain as active as possible without causing post-exertional malaise.

== Advocacy ==

=== '''Psychosomatic theories and stigma''' ===
Because blood tests often return normal and most patients are women, ME/CFS has historically been minimalized. The illness has inappropriately been called ‘[[Yuppie Flu|yuppie flu]]’ and was once dismissed as [[hysteria]]. Patients have reported harm from [[Psychosomatic illness|psychosomatic theories]] that assume ME/CFS to be caused by abnormal illness beliefs and excessive resting behavior. This has been considered a barrier to appropriate patient care.
[[File:NIH funding.png|[https://report.nih.gov/funding/categorical-spending#/ Research funding by National Institutes of Health (NIH) for ME/CFS and similar illness categories.]|thumb|800x800px]]

=== High disease burden, low funding ===
Economic costs due to ME/CFS are high. In the United States, estimates range from $36 to $51 billion per year, considering both lost wages and healthcare costs. In Europe, the illness has been estimated to affect up to 2.2% of the population<ref>{{Cite journal|title=Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology|date=2020-05-21|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7290765/|journal=Journal of Clinical Medicine|volume=9|issue=5|pages=1557|last=Estévez-López|first=Fernando|last2=Mudie|first2=Kathleen|last3=Wang-Steverding|first3=Xia|last4=Bakken|first4=Inger Johanne|last5=Ivanovs|first5=Andrejs|last6=Castro-Marrero|first6=Jesús|last7=Nacul|first7=Luis|last8=Alegre|first8=Jose|last9=Zalewski|first9=Paweł|last10=Słomko|first10=Joanna|last11=Strand|first11=Elin Bolle|doi=10.3390/jcm9051557|pmc=7290765|pmid=32455633|issn=2077-0383}}</ref> and the annual burden of ME/CFS is estimated to be 40 billion euros annually.{{Citation needed|reason=Annual euro amount|date=7 June 2024}}

Despite its high disease burden, research on ME/CFS remains underfunded. One analysis of NIH funding found that ME/CFS research only receives 7% of the amount commensurate with its disease burden. A study contracted by the European Commission also identified ME/CFS as a high-burden, under-researched medical condition.

=== '''12 May: World ME Day''' ===
ME/CFS organizations have advocated against stigma and for more recognition of the illness in research and the healthcare system. On 12 May, World ME/CFS Day, various awareness events are organized worldwide to highlight the millions of ME/CFS patients who have disappeared from public life because of their illness. These are often called ‘Millions Missing’ events, a campaign coordinated by the US-based [[The MEAction Network|ME Action Network]].

== Resources ==

=== '''Reports and guidelines''' ===

* National Academy of Medicine (NAM). [https://pubmed.ncbi.nlm.nih.gov/25695122/ Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness], 2015.
* National Institute for Health and Care Excellence (NICE). [https://www.nice.org.uk/guidance/ng206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management]. NICE guideline [NG206]. 29 October 2021.
* Institute for Quality and Efficiency in Health Care (IQWiG). [https://www.iqwig.de/en/presse/press-releases/press-releases-detailpage_93184.html ME/CFS: The current state of knowledge]. 15 May 2013.
* Centers for Disease Control and Prevention (CDC). [https://www.cdc.gov/me-cfs/about/index.html#:~:text=Myalgic%20encephalomyelitis%2Fchronic%20fatigue%20syndrome%20(ME%2FCFS)%20is,no%20known%20cause%20or%20cure. ME/CFS Basics]. 10 May 2024.

=== '''Patient organizations''' ===

* [https://worldmealliance.org/ World ME Alliance]
* [https://www.meaction.net/ ME Action Network]
* [https://meassociation.org.uk/ The ME Association]
* [https://www.mecfs.de/ Deutsche Gesellschaft für ME/CFS.]
* [https://www.europeanmealliance.org/index.shtml European ME Alliance]

=== '''ME/CFS experts''' ===

* [[Luis Nacul]]
* [[Carmen Scheibenbogen]]
* [[Lucinda Bateman]]
* [[Nancy Klimas]]
* [[Anthony Komaroff]]
* [[Chris Ponting]]
* [[Karl Tronstad]]

=== '''Examples of excellent reporting''' ===

* George Monbiot. ‘[https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal.] The Guardian, 12 march 2024.
* Ed Yong. [https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/ Fatigue Can Shatter a Person]. The Atlantic, 27 July 2023.
* David Tuller. [https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/ When the doctor doesn’t listen]. Coda, 27 Januari 2023.

== References ==

Low dose naltrexone

2024-06-07T11:42:35Z

Forestglip:added citations

'''Low Dose Naltrexone''' (LDN) refers to very small doses of the drug '''naltrexone hydrochloride''', which at higher doses treats drug or [[alcohol]] dependence. Low dose naltrexone may reduce [[pain]], or potentially [[Nervous system|neurological]] symptoms. Brand names of naltrexone include '''ReViva''', '''Depade''', and '''Vivitrol'''.<ref name="brands">{{Cite web|url=https://www.drugs.com/ingredient/naltrexone.html | title = Naltrexone - brand name list from Drugs.com|website=Drugs.com|language=en|access-date=2022-01-17}}</ref>
LDN use other for treating drug dependence is considered off-label. Some patients report that LDN helps reduce their symptoms of [[ME/CFS]], [[Long COVID]], [[fibromyalgia]] (FMS), [[multiple sclerosis]] (MS), or [[autoimmune disease]].<ref>{{Cite journal|title=Low-dose naltrexone as a treatment for chronic fatigue syndrome|url=https://pubmed.ncbi.nlm.nih.gov/31911410/|journal=BMJ case reports|date=2020-01-06|issn=1757-790X|pmc=6954765|pmid=31911410|pages=e232502|volume=13|issue=1|doi=10.1136/bcr-2019-232502|first=Monica Jane|last=Bolton|first2=Bryan Paul|last2=Chapman|first3=Harm|last3=Van Marwijk}}</ref><ref>{{Cite journal|title=Low-dose naltrexone use for the management of post-acute sequelae of COVID-19|url=https://www.sciencedirect.com/science/article/pii/S1567576923012912|journal=International Immunopharmacology|date=2023-11|issn=1567-5769|pmc=11028858|pmid=37804660|pages=110966|volume=124|doi=10.1016/j.intimp.2023.110966|language=en-US|first=Hector|last=Bonilla|first2=Lu|last2=Tian|first3=Vincent C.|last3=Marconi|first4=Robert|last4=Shafer|first5=Grace A.|last5=McComsey|first6=Mitchel|last6=Miglis|first7=Philip|last7=Yang|first8=Andres|last8=Bonilla|first9=Lauren|last9=Eggert|first10=Linda N.|last10=Geng}}</ref><ref>{{Cite journal|title=Low-Dose Naltrexone (LDN)—Review of Therapeutic Utilization|date=2018-09-21|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313374/|journal=Medical Sciences|volume=6|issue=4|pages=82|last=Toljan|first=Karlo|last2=Vrooman|first2=Bruce|doi=10.3390/medsci6040082|pmc=6313374|pmid=30248938|issn=2076-3271}}</ref><ref>{{Cite journal|title=Efficacy of Low-Dose Naltrexone and Predictors of Treatment Success or Discontinuation in Fibromyalgia and Other Chronic Pain Conditions: A Fourteen-Year, Enterprise-Wide Retrospective Analysis|url=https://www.mdpi.com/2227-9059/11/4/1087|journal=Biomedicines|date=2023-04|issn=2227-9059|pmc=PMC10135963|pmid=37189705|pages=1087|volume=11|issue=4|doi=10.3390/biomedicines11041087|language=en|first=C. Noelle|last=Driver|first2=Ryan S.|last2=D’Souza}}</ref><ref>{{Cite web|url=https://ldnresearchtrust.org/sites/default/files/LDN_Side_Effects_Results_2021.pdf|title=Results of the LDN Side Effects Survey|last=Brook|first=Jill|website=LDN Research Trush|access-date=Jun 7 2024}}</ref> Although its mechanism of action is unclear, some have speculated that it may act as an anti-inflammatory.<ref name="Younger2014" />

==Prescription forms ==
LDN is typically prescribed using generic naltrexone hydrochloride or branded naltrexone, divided into much smaller doses. LDN may be taken in the form of liquid solution/syrup, sublingual doses or 1.5mg capsules, or a compounding pharmacy can create smaller sized capsules or tablets. LDN in the form of naltrexone cream, subcutaneous injections, IV naltrexone and eye drops (for [[Sjögren's syndrome|dry eyes]]) are also available.<ref name="forms">{{Cite web|url=https://ldnresearchtrust.org/types-of-ldn | title = Types of LDN | last = | first = | authorlink = | date = | website = LDN Research Trust |language=en|archive-url=|archive-date=|url-status=|access-date=2022-01-17}}</ref>

== VLDN and ULDN ==
'''Very Low Dose Naltrexone''' (VLDN) and '''Ultra-Low Dose Naltrexone''' (ULDN) have recently been used in limited trials, both VLDN and ULDN involve doses of naltrexone significantly below 1mg.<ref>{{Cite journal | last = Toljan | first = Karlo | author-link =Karlo Toljan | last2 = Vrooman | first2 = Bruce | authorlink2 = Bruce Vrooman | date = Sep 21, 2018 | title = Low-Dose Naltrexone (LDN)—Review of Therapeutic Utilization | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313374/|journal=Medical Sciences|volume=6|issue=4|pages=|doi=10.3390/medsci6040082|issn=2076-3271|pmc=|pmid=30248938|quote=|via=}}</ref>

Very Low Dose Naltrexone is increasingly being used under 1mg for people who cannot titrate from 0.5mg to find their individual optimal dose.
==Evidence==
[[File:LDN-Fibro2014.jpg|alt=Data shows a graph with 10% worse after treatment, 57% improved or much improved, and 12% very much improved. Darker colors are the most improved sections.|thumb|350x350px|Low Dose Naltrexone results for 29 patients with [[Fibromyalgia]]. Fibromyalgia participants’ (N = 29) self-reported improvement in symptoms after daily LDN treatment.
Source: Clin Rheumatol 2014; 33(4):452-459. Fig 1.<ref name="Younger2014" /> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/figure/Fig1/ PMC3962576] ]]

[[Jarred Younger]] published a small study that concluded "...low-dose naltrexone may be an effective, highly tolerable, and inexpensive treatment for fibromyalgia".<ref name="Younger2009" /><ref name="Mackey2009" />

A second study concluded that "specific and clinically beneficial impact on fibromyalgia pain".<ref name="Younger2013" /><ref>{{Cite web|url=https://med.stanford.edu/pain/snapl/completed-research/naltrexone2.html | title = Low Dose Naltrexone for Fibromyalgia|website=Systems Neuroscience and Pain Lab {{!}} Stanford Medicine|language=en|access-date=2018-10-04 | date = |last = | first = | authorlink = |archive-url=|archive-date=|url-status=}}</ref>

A 2014 review by Stanford researchers suggests that "LDN may operate as a novel anti-inflammatory agent in the [[central nervous system]], via action on [[microglia]]l cells. These effects may be unique to low dosages of naltrexone and appear to be entirely independent from naltrexone's better-known activity on [[opioid]] receptors. As a daily oral therapy, LDN is inexpensive and well-tolerated."<ref name="Younger2014" />
[[File:LDN-Fibro-ESR.jpg|thumb|420x420px|Relationship between ESR, a marker inflammation, and LDN treatment in 29 patients with [[Fibromyalgia]]. ]]
The [[FDA]] approved naltrexone HCL in 1984 to treat opioid addiction. Low-dose naltrexone is typically given at about 1/10th the typical dose of naltrexone. By blocking opioid receptors, naltrexone can increase pain, but at very low doses naltrexone has both pain-reducing ([[analgesic]]) and anti-inflammatory properties.

In 2012 [[Solve ME/CFS Initiative]] contracted [[Biovista]] to use drug models to identify existing drugs that may be worth investigating for treatment. The results suggested Naltrexone was worth considering.<ref>{{Cite web|url=http://solvecfs.org/biovista-work-released | title = Biovista work released|last = Solve ME/CFS Initiative | first = | authorlink = Solve ME/CFS Initiative | date = |website=|archive-url=|archive-date=|access-date=|url-status=live}}</ref>

Jarred Younger's research suggests that people with an [[Erythrocyte sedimentation rate|Erythrocyte Sedimentation Rate]] (ESR) over 40 millimeters an hour, tend to be strong responders to LDN, and that there may be other predictive factors for success.<ref name="Younger20160329sh" />

==News articles==
* 2019, [https://www.npr.org/sections/health-shots/2019/09/23/741783834/in-tiny-doses-an-addiction-medication-moonlights-as-a-treatment-for-chronic-pain In Tiny Doses, An Addiction Medication Moonlights As A Treatment For Chronic Pain] - NPR, All Things Considered
* September 9, 2021<nowiki/>https://www.empr.com/home/news/drugs-in-the-pipeline/low-dose-naltrexone-designated-orphan-drug-for-complex-regional-pain-syndrome/

==Clinical use==

Naltrexone is a prescription drug in many countries including the [[United States]].<ref name="naltrexonecompliance">{{Cite journal | last = Feeney|first = G. F. X. | last2 = Connor | first2 = J.P. | last3 = Young | first3 = R. McD | last4 = Tucker | first4 = J. | last5 = Czajkowski | first5 = F. | date = 2001 | title = Adherence with naltrexone prescription advice in hospital outpatient alcohol rehabilitation programme|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2710.2001.00326.x|journal=Journal of Clinical Pharmacy and Therapeutics|language=en|volume=26|issue=1 | pages = 73–79|doi=10.1111/j.1365-2710.2001.00326.x|issn=1365-2710}}</ref>Compounding chemists or compounding pharmacists can mix naltrexone with a powder filler or dilute in into a liquid to create the lower dose.

=== Fast-release fillers only ===
The LDN Research Trust advises that:
"Pharmacies should be instructed NOT to provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited."<ref name="leaflet2014" /> and states that calcium carbonate filler should NOT be used because they reduce absorption, instead Avicel, lactose, or sucrose fillers as alternative fast-release fillers."<ref name="leaflet2014">{{Cite web|url=https://ldnresearchtrust.org/sites/default/files/Doctors-info-pack-US.pdf | title=Low-dose Naltrexone (LDN) Fact Sheet 2014 | website = LDN Research Trust | date = 2014}}</ref>

===Do not take with===
In general, Low Dose Naltrexone (LDN) should not be taken concurrently with opioid-containing drugs (opioid receptors in brain are blocked by LDN), alcohol, immunosuppressive drugs, or immunomodulator drugs.{{citation needed | date = 2021}} LDN blocks the effect of opioid drugs.<ref name="chronicpain">{{Cite web|url=https://www.ldnresearchtrust.org/content/low-dose-naltrexone-and-chronic-pain-pradeep-chopra-md | title = Low Dose Naltrexone and chronic pain | first = Pradeep |last =Chopra|website=LDN Research Trust|access-date=2019-01-31}}</ref> Some opioid drugs are [[codeine]], [[tramadol]], [[oxycodone]], [[vicodin]], [[hydrocodone]], [[fentanyl]] and [[morphine]].
==Pharmacies ==

=== Australia ===
''Compounding Pharmacies'' are able to fill these prescriptions, and post if needed.

=== UK ===
LDN suppliers in the UK include '''Dickson Chemist''' in Glasgow, Roseway Labs, and Specialist Pharmacy (The London Specialist Pharmacy Ltd). All these are compounding pharmacies and require a perscription, they are usually able to put patients in contact with private doctors who will consider writing a prescription, and can post medications to you.<ref name="RosewayLabs">{{Cite web |url = https://rosewaylabs.com/compounding-processes-regulations | title = Compounding processes regulations/|website =Roseway Labs}}</ref> Compounding pharmacies are regulated by the UK's General Pharmaceutical Council.<ref name="RosewayLabs" />

===United States===
Neighborhood ''Compounding Pharmacies'' are able to fill these prescriptions and mail if needed. Your prescribing doctor can help you locate a compounding pharmacy in your area/state or you can look online.<ref>[http://www.wikihow.com/Find-a-Compounding-Pharmacy Finding a Compounding Pharmacy - WIKI How]</ref>

===Other countries ===
The LDN Research Trust lists pharmacies in multiple countries.<ref name="sources">{{Cite web |url = https://ldnresearchtrust.org/ldn-pharmacists|website=LDN Research Trust|title =LDN Pharmacists |access-date =}}</ref>

== Clinical trials ==
A large number of clinical trials have been completed for LDN recently, although none have looked at the effect of LDN on symptoms of [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]]. Research has been carried out on patients with MS, [[Chronic Regional Pain Syndrome]], FMS, [[Irritable bowel syndrome|Irritable Bowel Syndrome]] (IBS), Ulcerative Colitis, Skin Disorders and a range of other illnesses.<ref name="trials">{{Cite web|url=https://www.ldnresearchtrust.org/ldn-clinical-trials | title = Clinical Trials|website=LDN Research Trust|access-date=2019-01-21}}</ref>

==When, How To Take ==
Dr Whitaker states that the ideal dose is different for each person. Some doctors recommend starting at 1mg.<ref name="LDN-now">{{Cite web|url=http://www.ldnnow.com/48591/90512.html | title = LDN Dosing|last = LDN Now|first = | authorlink = | date = | website = |access-date=2018-02-01}}</ref> Common dosages are 1.5mg, 3mg, 4.5mg.<ref>{{Cite web|url=https://www.amymyersmd.com/2017/05/low-dose-naltrexone/ | title = Low-Dose Naltrexone for Autoimmunity? | last = Myers | date = 2017-05-02 | website = Amy Myers MD|language=en-US|access-date=2019-02-02|first = Amy | authorlink = |archive-url=|archive-date=|url-status=}}</ref><ref name=":1">{{Cite web|url=https://www.drwhitaker.com/what-is-low-dose-naltrexone | title = What is Low-Dose Naltrexone?|last = Dr Whitaker | first = | authorlink = | date = | website = drwhitaker.com|language=en|archive-url=|archive-date=|access-date=2019-01-21}}</ref><ref name="chronicpain" /> When beginning use of LDN, the drug must be stepped up over 6-8+ weeks as it may keep you awake; discuss how best to do this with your doctor and pharmacist.<ref name=":1" /><ref>{{Cite web|url=https://collierdrug.com/low-dose-naltrexone-ldn/ | title = Low Dose Naltrexone (LDN) – Collier Drug Store|last = | first = | authorlink = | date = | website = collierdrug.com|at=What dose of Low Dose Naltrexone (LDN) is best?|archive-url=|archive-date=|access-date=2019-02-02}}</ref><ref name="chronicpain" />

LDN is usually taken at bedtime. Some people take LDN in the morning to minimize [[Sleep dysfunction|sleep disturbance]], [[insomnia]], and vivid dreams.<ref name="chronicpain" />

== Talks and webinars==
*2012, [https://www.youtube.com/watch?v=z0p0ykSzy9o LDNscience® Presents - How LDN (Low Dose Naltrexone) Works]<ref>{{Cite web|url=https://www.youtube.com/watch?v=z0p0ykSzy9o | title = LDNscience® Presents - How LDN (Low Dose Naltrexone) Works|last = | first = | authorlink = | date = Dec 20, 2012 | website = YouTube|publisher=LDNscience|archive-url=|archive-date=|access-date=}}</ref>
<embedvideo service="youtube" dimensions="400" alignment="center" container="frame" description="''LDNscience® Presents - How LDN (Low Dose Naltrexone) Works'' By LDNscience">https://www.youtube.com/watch?v=z0p0ykSzy9o</embedvideo>

*2015, [https://www.youtube.com/watch?v=8a-ULCaarCQ Functional Medicine & LDN (low-dose naltrexone) with Drs Carnahan and Vasquez]<ref>{{Cite web|url=https://www.youtube.com/watch?v=8a-ULCaarCQ | title = Functional Medicine & LDN (low-dose naltrexone) with Drs Carnahan and Vasquez|last = Carnahan | first = Jill | authorlink= | last2 = Vasquez | first2 = Alex | authorlink2 = | date = Nov 30, 2015 | website = YouTube|publisher=Alex Vasquez|archive-url=|archive-date=|access-date=}}</ref>
<embedvideo service="youtube" dimensions="400" alignment="center" container="frame" description="''Functional Medicine & LDN (low-dose naltrexone) with Drs Carnahan and Vasquez '' By Alex Vasquez">https://www.youtube.com/watch?v=8a-ULCaarCQ</embedvideo>

*2015, [https://www.youtube.com/watch?v=Qnr51yU9ih8 Is Low Dose Naltrexone (LDN) for you?]<ref>{{Cite web|url=https://www.youtube.com/watch?v=Qnr51yU9ih8 | title = 1:05 / 7:05 Is Low Dose Naltrexone (LDN) for you?|last = | first = | authorlink = | date = Oct 11, 2015 | website = YouTube | archive-url=|archive-date=|access-date=}}</ref>
<embedvideo service="youtube" dimensions="400" alignment="center" container="frame" description="''Is Low Dose Naltrexone (LDN) for you?'' By Integrative Health Solutions">https://www.youtube.com/watch?v=Qnr51yU9ih8</embedvideo>

==Notable studies==
* 2009, Fibromyalgia Symptoms Are Reduced by Low-Dose Naltrexone: A Pilot Study<ref>{{Cite journal|last = Younger | first = Jarred | authorlink = Jarred Younger | last2 = Mackey | first2 = Sean | authorlink2 = | date = May 2009 | title = Fibromyalgia Symptoms Are Reduced by Low-Dose Naltrexone: A Pilot Study|url=https://academic.oup.com/painmedicine/article-lookup/doi/10.1111/j.1526-4637.2009.00613.x|journal=Pain Medicine|language=en|volume=10|issue=4 | pages = 663–672|doi=10.1111/j.1526-4637.2009.00613.x|issn=1526-2375|pmc=2891387|pmid=19453963|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2891387/ (Full text)]
* 2013, Low-dose naltrexone for the treatment of fibromyalgia: findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels<ref name="Younger2013" /> - [https://onlinelibrary.wiley.com/doi/full/10.1002/art.37734 (Full text)]
* 2014, The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain<ref name="Younger2014" /> - [http://link.springer.com/article/10.1007%2Fs10067-014-2517-2 (Full text)]
*2018, Double-blinded placebo-controlled cross-over pilot trial of naltrexone to treat [[Gulf War Illness]]<ref name="Brewer, 2018" /> - [https://www.tandfonline.com/doi/full/10.1080/21641846.2018.1477034 (Abstract)]

* 2018, Low-Dose Naltrexone (LDN)—Review of Therapeutic Utilization<ref>{{Cite journal | last = Toljan | first = Karlo | last2 = Vrooman | first2 = Bruce | date = 2018-09-21 | title = Low-Dose Naltrexone (LDN)—Review of Therapeutic Utilization | url = http://www.mdpi.com/2076-3271/6/4/82|journal=Medical Sciences|language=en|volume=6|issue=4 | pages = 82|doi=10.3390/medsci6040082|issn=2076-3271|pmc=6313374|pmid=30248938}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313374/#!po=19.1057 (Full text)]

* 2019, Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)<ref name="Polo2019">{{Cite journal | last = Polo|first = Olli | authorlink = Olli Polo | last2 = Pesonen | first2 = Pia | authorlink2 = | last3 = Tuominen | first3 = Essi | authorlink3 = | date = 2019-11-19 | title = Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)|url=https://www.tandfonline.com/doi/full/10.1080/21641846.2019.1692770|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=7|issue=4|pages=207-217|doi=10.1080/21641846.2019.1692770|issn=2164-1846|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.tandfonline.com/doi/abs/10.1080/21641846.2019.1692770?journalCode=rftg20 (Abstract)]
* 2020, Low-dose naltrexone as a treatment for chronic fatigue syndrome<ref>{{Cite journal|last = Bolton | first = Monica Jane | authorlink = | last2 = Chapman | first2 = Bryan Paul | authorlink2 = | last3 = Van Marwijk | first3 = Harm | authorlink3 = | date = Jan 2020 | title = Low-dose naltrexone as a treatment for chronic fatigue syndrome|url=http://casereports.bmj.com/lookup/doi/10.1136/bcr-2019-232502|journal=BMJ Case Reports|language=en|volume=13|issue=1| pages = e232502|doi=10.1136/bcr-2019-232502|issn=1757-790X|pmc=6954765|pmid=31911410|access-date=|quote=|via=}}</ref> - [https://casereports.bmj.com/content/bmjcr/13/1/e232502.full.pdf (Full text)]
*2021, Potential Therapeutic Benefit of Low Dose Naltrexone in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Role of Transient Receptor Potential Melastatin 3 Ion Channels in Pathophysiology and Treatment<ref name="Cabanas2021">{{Cite journal | title = Potential Therapeutic Benefit of Low Dose Naltrexone in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Role of Transient Receptor Potential Melastatin 3 Ion Channels in Pathophysiology and Treatment | date = 2021|url=https://www.frontiersin.org/articles/10.3389/fimmu.2021.687806|journal=Frontiers in Immunology|volume=12|issue= | pages = 687806|last = Cabanas | first = Helene | authorlink = Hélène Cabanas | last2 = Muraki | first2 = Katsuhiko | authorlink2 = | last3 = Eaton-Fitch | first3 = Natalie | authorlink3 = Natalie Eaton-Fitch | last4 = Staines | first4 = Donald Ross | authorlink4 = Donald Staines | last5 = Marshall-Gradisnik | first5 = Sonya | authorlink5 = Sonya Marshall-Gradisnik|doi=10.3389/fimmu.2021.687806|pmc=PMC8313851|pmid=34326841|access-date=|issn=1664-3224|quote=|via=}}</ref> - [https://www.frontiersin.org/articles/10.3389/fimmu.2021.687806/full (Full text)]

==See also==
*[[Endorphin]]
*[[Brain#Microglia|Microglia]]
*[[Oxymatrine]]
*[[The LDN Book]]

==Learn more==
*[https://ldnresearchtrust.org/sites/default/files/Doctors-info-pack-US.pdf Low-dose Naltrexone (LDN) Doctor's Fact Sheet 2014] - LDN Research Trust
*[https://www.ldnresearchtrust.org LDN Research Trust]<ref>{{Cite web|url=https://www.ldnresearchtrust.org/ | title = Low Dose Naltrexone {{!}}|website=LDN Research Trust|access-date=2019-02-02}}</ref>
*[https://www.ldnresearchtrust.org/content/low-dose-naltrexone-and-chronic-pain-pradeep-chopra-md Low Dose Naltrexone and chronic pain]<ref name="chronicpain" />
*[https://en.wikipedia.org/wiki/Naltrexone Wikipedia - Naltrexone]
*[http://www.ldnnow.com/ LDN Now]
*[https://www.ldnscience.org/ LDN Science - MedInsight Research Institute]
*2015, [https://www.ncbi.nlm.nih.gov/books/NBK390569/ The Use of Naltrexone in Low Doses Beyond the Approved Indication]<ref name="NBK390569">{{Citation | url = https://www.ncbi.nlm.nih.gov/books/NBK390569/ | title = The Use of Naltrexone in Low Doses Beyond the Approved Indication|last = Ringerike | first = Tove | last2 = Pike | first2 = Eva | last3 = Nevjar | first3 = Janicke | last4 = Klemp | first4 = Marianne|publisher=NIPH| year = 2015 |isbn=|location=}}</ref>
* [https://selfhacked.com/2016/06/20/top-22-scientific-health-benefits-low-dose-naltrexone/ Top 15 Scientific Health Benefits of Low Dose Naltrexone] (2016)
*[https://www.healthrising.org/treating-chronic-fatigue-syndrome/drugs/low-dose-naltrexone-ldn-fibromyalgia-chronic-fatigue-syndrom/ Low Dose Naltrexone Resource Center for Fibromylgia and ME/CFS] (2019)
*2016, [http://www.rheumatologyadvisor.com/fibromyalgia/using-low-dose-naltrexone-in-fibromyalgia/article/478182/ Low-Dose Naltrexone as Adjunctive Pharmacotherapy for Fibromyalgia]
*[[The LDN Book]] - Lisa Elsegood (2016)
*[http://www.cortjohnson.org/blog/2016/02/04/low-dose-naltrexone-combo-chronic-fatigue/ 2016, Low Dose Naltrexone Drug Combination Proposed for Chronic Fatigue Syndrome] - Health Rising, by [[Cort Johnson]] (2016)
*[https://cfsremission.wordpress.com/2016/03/19/review-of-low-dose-naltrexone/ Low dose naltrexone: side effects and efficacy in gastrointestinal disorders] by [[CFS Remission]] (2016)
*Opioid blocking and alcohol - [http://www.well.com/user/woa/revia/reviafaq.htm FAQ About Naltrexone Treatment for Alcoholism - 10.]
*[https://www.cfspharmacy.pharmacy/blog/post/low-dose-naltrexone-for-fibromyalgia Low Dose Naltrexone for Fibromyalgia] (2018)
* [https://www.cfspharmacy.pharmacy/blog/post/low-dose-naltrexone-therapy-for-crohn-s-disease Low Dose Naltrexone Therapy for Crohn's Disease] (2018)
* [https://www.facebook.com/groups/200010163370187 LDN LOW DOSE NALTREXONE FOR ME/CFS MYALGIC ENCEPHALOMYELITIS & FIBROMYALGIA]

==References==
<references>
<ref name="Brewer, 2018">{{Cite journal | last1 = Brewer | first1 = Kori L. | authorlink1 = | last2 = Mainhart | first2 = Allison | authorlink2 = | last3 = Meggs | first3 = William J. | authorlink3 = | title = Double-blinded placebo-controlled cross-over pilot trial of naltrexone to treat Gulf War Illness | journal = Fatigue: Biomedicine, Health & Behavior | volume = 6 | issue = 3 | pages = 132-140 | date = 2018 | pmid = | url = https://ldnresearchtrust.org/double-blinded-placebo-controlled-cross-over-pilot-trial-naltrexone-treat-gulf-war-illness-abstract | doi = 10.1080/21641846.2018.1477034}}</ref>
<ref name="Younger2009">{{Cite journal | last1 = Younger | first1 = Jarred | authorlink1 = Jarred Younger | last2 = Mackey | first2 = Sean | authorlink2 = Sean Mackey | title = Fibromyalgia Symptoms Are Reduced by Low-Dose Naltrexone: A Pilot Study | journal = Pain Med | volume = 10 | issue = 4 | pages = 663–672 | date = Apr 22, 2009 | pmid = 2891387 | doi = 10.1111/j.1526-4637.2009.00613.x | url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2891387/ }}</ref>
<ref name="Younger2013">{{Cite journal | last1 = Younger | first1 = Jarred | authorlink1 = Jarred Younger | last2 = Noor | first2 = Noorulain | authorlink2 = Noorulain Noor | last3 = McCue | first3 = Rebecca| authorlink3 = Rebecca McCue | last4 = Mackey | first4 = Sean | authorlink4 = Sean Mackey | title = Low-dose naltrexone for the treatment of fibromyalgia: findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels | journal = Arthritis Rheum | volume = 65 | issue = 2 | pages = 529-38 | date = Jan 28, 2013 | pmid = 23359310 | doi = 10.1002/art.37734 | url = http://onlinelibrary.wiley.com/enhanced/doi/10.1002/art.37734/}}</ref>
<ref name="Mackey2009">{{Cite web | last1 = Mackey | first1 = Sean | authorlink1 = Sean Mackey | title = An Update on Fibromyalgia
| publisher = Research Channel (USA) | date = May 1, 2009 | url = https://www.youtube.com/watch?v=jtc2JARVpPw}}</ref>
<ref name="Younger2014">{{Cite journal | last1 = Younger | first1 = Jarred | authorlink1 = Jarred Younger | last2 = Parkitny | first2 = Luke | authorlink2 = Luke Parkitny | last3 = McLain | first3 = David | authorlink3 = David McLain | title = The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain | journal = Clin Rheumatol | volume = 33 | issue = 4 | pages = 451-459 | date = Feb 15, 2014 | pmid = 24526250 | doi = 10.1007/s10067-014-2517-2 | url = http://link.springer.com/article/10.1007%2Fs10067-014-2517-2}}</ref>
<ref name="Younger20160329sh">{{Cite web | last1 = Younger | first1 = Jarred | authorlink1 = Jarred Younger | last2 = Cohen | first2 = Joseph M | authorlink2 = Joseph Cohen | title = Dr. Jarred Younger: Cutting Edge Research on CFS, Neuroinflammation, Pain, and Fatigue
| type = video interview with transcript
| publisher = Self Hacked Blog | date = Mar 29, 2016 | url = http://selfhacked.com/2016/03/29/dr-jared-younger-cutting-edge-research-on-cfs-neuroinflammation-pain-and-fatigue/#Leptin_and_Chronic_Fatigue_Syndrome}}</ref>
</references>

[[Category:Potential treatments]]
[[Category:Anti-inflammatories]]
[[Category:Analgesics]]

Dextro-naltrexone

2024-06-07T11:39:15Z

Forestglip:added citations

'''Dextro-naltrexone''' is a potential treatment proposed by [[Jarred Younger]] for chronic pain, fatigue, and cognitive disorders related to brain inflammation, theoretically with similar benefits to [[low dose naltrexone]] but without the harsh side effects which necessitate limiting the dose.<ref name=":0">{{cite web |last1=Younger |first1=Jarred |author1-link=Jarred Younger |title=013 - Dextronaltrexone for Chronic Pain and Fatigue |url=https://www.youtube.com/watch?v=K2SYjG6jM5k |website=youtube.com |publisher=Neuroinflammation, Pain, and Fatigue Lab at UAB |language=en |format=video |date=April 22, 2024}}</ref>

==Theory==
Dextro-naltrexone is the right-handed stereoisomer of the drug naltrexone. Stereoisomers are molecules that have the same chemical formula and atoms, but are mirror images of each other.

Like the levo- (left-handed) form of naltrexone used as low-dose naltrexone (LDN), which some patients have reported is somewhat effective for conditions like [[ME/CFS]], [[Long COVID]], and [[fibromyalgia]]<ref>{{Cite journal|title=Low-dose naltrexone as a treatment for chronic fatigue syndrome|date=2020-01-06|url=https://pubmed.ncbi.nlm.nih.gov/31911410/|journal=BMJ case reports|volume=13|issue=1|pages=e232502|last=Bolton|first=Monica Jane|last2=Chapman|first2=Bryan Paul|last3=Van Marwijk|first3=Harm|doi=10.1136/bcr-2019-232502|pmc=6954765|pmid=31911410|issn=1757-790X}}</ref><ref>{{Cite journal|title=Low-dose naltrexone use for the management of post-acute sequelae of COVID-19|date=2023-11|url=https://www.sciencedirect.com/science/article/pii/S1567576923012912|journal=International Immunopharmacology|volume=124|pages=110966|last=Bonilla|first=Hector|last2=Tian|first2=Lu|last3=Marconi|first3=Vincent C.|last4=Shafer|first4=Robert|last5=McComsey|first5=Grace A.|last6=Miglis|first6=Mitchel|last7=Yang|first7=Philip|last8=Bonilla|first8=Andres|last9=Eggert|first9=Lauren|last10=Geng|first10=Linda N.|language=en-US|doi=10.1016/j.intimp.2023.110966|pmc=11028858|pmid=37804660|issn=1567-5769}}</ref><ref>{{Cite journal|title=Efficacy of Low-Dose Naltrexone and Predictors of Treatment Success or Discontinuation in Fibromyalgia and Other Chronic Pain Conditions: A Fourteen-Year, Enterprise-Wide Retrospective Analysis|date=2023-04|url=https://www.mdpi.com/2227-9059/11/4/1087|journal=Biomedicines|volume=11|issue=4|pages=1087|last=Driver|first=C. Noelle|last2=D’Souza|first2=Ryan S.|language=en|doi=10.3390/biomedicines11041087|pmc=PMC10135963|pmid=37189705|issn=2227-9059}}</ref>, dextro-naltrexone is theorized to cross the [[blood-brain barrier]] and calm activated [[microglia]] cells in the brain. Overactive microglia release [[Inflammation|inflammatory]] chemicals that contribute to symptoms like pain, fatigue, and cognitive impairment.

However, while levo-naltrexone (LDN) also acts as an opioid receptor antagonist, blocking the body's natural opioids and causing side effects like dysphoria and malaise, dextro-naltrexone is not expected to have this opioid-blocking effect.<ref>{{Cite journal|title=The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain|date=2014-04-01|url=https://doi.org/10.1007/s10067-014-2517-2|journal=Clinical Rheumatology|volume=33|issue=4|pages=451–459|last=Younger|first=Jarred|last2=Parkitny|first2=Luke|last3=McLain|first3=David|language=en|doi=10.1007/s10067-014-2517-2|issn=1434-9949}}</ref> This key difference means dextro-naltrexone could potentially be dosed higher than LDN to achieve greater anti-inflammatory and symptom relief benefits, without being limited by the harsh side effects that restrict LDN dosing.

==Evidence==
As yet, dextro-naltrexone has never been used in humans. Younger and his lab hope to secure funding in late 2024 to subsequently pursue human safety and efficacy trials.<ref name=":0" />

==Clinicians==

==Risks and safety==

==Cost and availability==

==See also==

==Learn more==


==References==
{{reflist}}


[[Category:Potential treatments]]
[[Category:Analgesics‎]]
[[Category:Anti-inflammatories‎]]
[[Category:Immunomodulators‎]]

Dextro-naltrexone

2024-06-07T10:44:01Z

Forestglip:toned down "LDN is one of the most effective"

Gulf War Illness

2024-06-07T03:22:45Z

Forestglip:/* Notable studies */ added study

[[File:Operation Desert Storm.png|400px|thumb|right|Map of ground operations of Operation Desert Storm starting invasion February 24-28th 1991. Shows allied and Iraqi forces. Special arrows indicate the American 101st Airborne division moved by air and where the French 6th light division and American 3rd Armored Cavalry Regiment provided security]]
'''Gulf War Illness''' (GWI), also known as '''Gulf War Syndrome''' (GWS), is a term used for unexplained illnesses occurring in veterans of the 1991 Gulf War in Southwest Asia. According to the [[Institute of Medicine]] in 2013, about one-third of US Gulf War veterans (250,000 of 700,000 personnel) suffer from “chronic multi-symptom illness (CMI): a series of symptoms that cannot be medically explained.”<ref>{{Cite web | url=http://www.hopkinsmedicine.org/healthlibrary/conditions/environmental_medicine/gulf_war_syndrome_85,P00487/ | title = Gulf War Syndrome | website = Johns Hopkins Medicine Health Library|language=en|access-date=2018-08-24}}</ref><ref name=":7">{{Cite web | url=http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=12835 | title = Gulf War Service Linked to Post-Traumatic Stress Disorder, Multisymptom Illness, Other Health Problems, But Causes Are Unclear | last = Stencel | first = Christine | date = Apr 9, 2010 | website = | publisher = The National Academies of Science Engineering Medicine|language=en|archive-url=|archive-date=Apr 9, 2010|access-date=2018-08-26}}</ref> ''Science News'' summary of June 29, 2016, states: "Veterans of the Gulf War are more than twice as likely to have medically unexplained symptoms known as "multisymptom illness" (MSI), compared to Iraq/Afghanistan War veterans, according to an updated research."<ref name="Porter2016">https://journals.lww.com/joem/Abstract/2016/07000/Multisymptom_Illness_in_Gulf_War_Veterans__A.3.aspx</ref>

A May 2022 study by Robert W Haley et al.<ref name="Haley2022"/> have concluded that "exposure to sarin gas that occurred after coalition airplanes blew up chemical storage tanks" was the cause, and that genetic differences in the [[Paraoxonase 1|PON1]] gene resulted in different risk levels to GWI.<ref>{{Cite web | url=https://www.healthrising.org/blog/2022/05/21/gulf-war-illness-breakthrough-chronic-fatigue-fibromyalgia-long-covid/ | title = The Gulf War Illness Breakthrough and why it Matters to ME/CFS/FM and long COVID | last = Johnson | first =Cort | date = 2022-05-21 | website = Health Rising|language=en-US|access-date=2022-06-09}}</ref><ref name="Haley2022"/> The PON1 gene determines the genetic risk of susceptibility to [[organophosphate]] cholinesterase-inhibiting chemicals including nerve agents such as sarin.<ref name="Haley2022"/>

== Symptoms ==
The U.S. Department of Veterans Affairs has a list on Gulf War Veterans' Medically Unexplained Illnesses.<ref name="VA-MUS" />
*[[ME/CFS|Myalgic Encephalomyelitis/Chronic fatigue syndrome]] ([[ME/CFS]]) with long-term severe [[fatigue]].
*[[Fibromyalgia]] characterized by chronic widespread [[myalgia|muscle pain]] and may include [[insomnia]], morning stiffness, [[headache]], and [[memory problems]].<ref name="VA-MUS">{{Cite web | url=https://www.publichealth.va.gov/exposures/gulfwar/medically-unexplained-illness.asp | title = Gulf War Veterans' Medically Unexplained Illnesses - Public Health | last = | first = |website=U.S. Department of Veterans Affairs, Veterans Health Administration|language=en|access-date=2018-08-24}}</ref>

=== Functional gastrointestinal disorders ===
A group of conditions marked by chronic or recurrent symptoms related to any part of the [[Gastrointestinal system|gastrointestinal tract]]. Functional condition refers to an abnormal function of an organ, without a structural alteration in the tissues.
*functional [[abdominal pain]] syndrome
*functional [[dyspepsia]] (indigestion)
*[[irritable bowel syndrome]]<ref name="VA-MUS" /><ref name="VA-MUS"/>

=== Undiagnosed illnesses ===
These symptoms may be connected to undiagnosed illnesses.
*abnormal [[weight loss]]
*[[cardiovascular]] disease
*[[fatigue]]
*[[headache]]
*[[joint pain]]
*[[menstrual disorder]]s
*[[Myalgia|muscle pain]]
*[[Nervous system|neurological]] and [[mental health|psychological problems]]
*respiratory disorders
*skin conditions
*[[sleep dysfunction]]<ref name="VA-MUS" />

=== Other symptoms ===
* [[dizziness]]
* [[memory problems]]<ref name="VA-MUS" />

=== Multisystem condition ===
In March 2003, New Scientist magazine's print edition reported on Dr. Robert Haley and his team identifying three distinct syndromes in Gulf war veterans that involved [[brain]] damage.
* ''Syndrome 1'': Symptoms are [[Cognitive impairment|impaired cognition]], distractions, and [[insomnia]] from the exposure of pesticide with [[basal ganglia]] damage.

* ''Syndrome 2'': The symptoms are [[confusion]], disorientation, [[ataxia]], and [[vertigo]] due to exposure to sarin and pyridostigmine with damage to the [[brainstem]] and basal ganglia.

* ''Syndrome 3'': Symptoms are [[pain]], [[paresthesia|tingling]], and [[numbness]] from exposure to DEET and [[Mestinon|pyridostigmine]] with damage to the brainstem.<ref name="NS2018">{{Cite news | url=https://www.newscientist.com/article/dn6609-us-in-u-turn-over-gulf-war-syndrome/ | title = US in U-turn over Gulf war syndrome | last = MacKenzie | first = Deborah | date = Nov 3, 2004|work=New Scientist|access-date=2018-08-26|archive-url=|archive-date=|language=en-US}}</ref>
175,000 of 700,000 US Gulf War personnel are affected by the brain damage syndromes categorized by Dr. Haley and 75,000 are ill due to other exposures; in total 250,000 are chronically ill with GWI.<ref name=":9">{{Cite web | url=https://youtu.be/OYKMMbPp_Do?t=546 | title = Dr. Robert Haley, What Caused Gulf War Illness | last = Haley | first = Robert | date = May 6, 2013 | website = YouTube| publisher = David Spencer|archive-url=|archive-date=|access-date=}}</ref><ref name="NS2018" /><ref name="VA-GWI">{{Cite web | url=https://www.publichealth.va.gov/exposures/gulfwar/sources/index.asp | title = Gulf War Exposures|website=U.S. Department of Veterans Affairs, Veterans Health Administration|language=en|access-date=2018-08-26}}</ref>

== Cause of illness ==
Causation include [[Vaccine|vaccination]]s; oil well fires; chemical and biological weapons; depleted uranium; noise; CARC [https://www.hillandponton.com/toxic-exposure/ paint used on military vehicles]; occupational hazards; [[Mestinon|pyridostigmine bromide]]; [[pesticide]]s or other [[organophosphate]]s; sand, dust, and particulates; toxic embedded fragments; infectious diseases; heat injuries; fuel; decontamination solutions; and the fluoroquinolone antibiotic [[ciprofloxacin]].<ref name="MilitaryTimes2013">{{Cite web | url=https://www.militarytimes.com/2013/11/01/new-fda-warnings-on-cipro-may-tie-into-gulf-war-illness/ | title = New FDA warnings on Cipro may tie into Gulf War illness | date = 2017-08-08 | website = Military Times|language=en-US|access-date=2020-09-13}}</ref><ref name="VA-GWI" /><ref name="Hogg2017">{{Cite web | url=http://www.ei-resource.org/illness-information/environmental-illnesses/gulf-war-syndrome/ | title = Gulf War Syndrome - Overview, Symptoms & Possible Causes | last = Hogg | first = Matthew | date = Jun 8, 2017 | website = EI Resource|language=en-gb|archive-url=|archive-date=|access-date=2018-08-26}}</ref><ref name="NS2018" />

=== Toxins ===
The conclusions and recommendations of the ''Gulf War Illness and the Health of Gulf War Veterans: Research Update and Recommendations, 2009-2013'' report<ref name="RACReport2014">{{Cite web | url=https://www.va.gov/RAC-GWVI/RACReport2014Final.pdf | title=Gulf War Illness and the Health of Gulf War Veterans: Research Update and Recommendations, 2009-2013: Updated Scientific Findings and Recommendations | last = ((Research Advisory Committee on Gulf War Veterans' Illnesses)) | first = | date = May 2014|location=Washington,D.C.| publisher = U.S. Government Printing Office | page = 60|archive-url=|archive-date=|access-date=}}</ref> conclude "exposure to pesticides and pyridostigmine bromide are causally associated with Gulf War illness" as well as other hazardous exposures including gas agents sarin/cyclosarin. "Mixed exposures include not only mixtures of chemicals but also chemicals combined with heat, dehydration, infection and other environmental stressors."<ref name="RACReport2014" />

A May 2022 study by Robert W Haley et al.<ref name="Haley2022" /> - "have concluded that "exposure to [[sarin]] gas that occurred after coalition airplanes blew up chemical storage tanks" was the cause of Gulf War Illness.<ref>{{Cite web | url=https://www.healthrising.org/blog/2022/05/21/gulf-war-illness-breakthrough-chronic-fatigue-fibromyalgia-long-covid/ | title = The Gulf War Illness Breakthrough and why it Matters to ME/CFS/FM and long COVID | last = Johnson | first =Cort | date = 2022-05-21 | website = Health Rising|language=en-US|access-date=2022-06-09}}</ref>

=== Vaccinations ===
Mass vaccinations "against infectious diseases including medical counter-measures against biological weapons" were given prior to military deployment.<ref name="Peakman, 2006">{{Citation | last1 = Peakman | first1 = Mark | authorlink = | last2 = Skowera | first2 = Ania| authorlink2= | last3 = Hotopf | first3 = Matthew | authorlink3 = Matthew Hotopf | title = Immunological dysfunction, vaccination and Gulf War illness|journal=Philosophical Transactions of the Royal Society B: Biological Sciences|volume=361|issue=1468 | page = 681–687 | date = 2006 | doi=10.1098/rstb.2006.1826}}</ref> Vaccination in the presence of elevated [[cortisol]] levels can drive [[cytokine]] expression toward [[Th2]] dominance.<ref name="Bernton1995">{{Cite journal | last = Bernton | first = E. | last2 = Hoover | first2 =D. | last3 = Galloway | first3 = R. | last4 = Popp | first4 = K. | date = 1995-12-29 | title = Adaptation to chronic stress in military trainees. Adrenal androgens, testosterone, glucocorticoids, IGF-1, and immune function | url =http://www.ncbi.nlm.nih.gov/pubmed/8597461|journal=Annals of the New York Academy of Sciences|volume=774 | pages = 217–231|issn=0077-8923|pmid=8597461}}</ref><ref>{{Cite journal | last = Ramírez | first = F. | last2 = Fowell | first2 =D.J. | last3 = Puklavec | first3 = M. | last4 = Simmonds | first4 = S. | last5 = Mason | first5 =D. | date = 1996-04-01 | title = Glucocorticoids promote a TH2 cytokine response by CD4+ T cells in vitro| url = http://www.ncbi.nlm.nih.gov/pubmed/8786298|journal=Journal of Immunology|volume=156|issue=7 | pages = 2406–2412|issn=0022-1767|pmid=8786298}}</ref>

== Comorbidities ==
Gulf War Illness increases the risk of developing other medical conditions. The U.S. Department of Veteran's Affairs found that "1990-1991 Gulf War deployment is associated with an increased risk for [[ME/CFS]], [[fibromyalgia]], skin conditions, and dyspepsia."<ref name="VA-website">{{Cite web | url=https://www.publichealth.va.gov/exposures/gulfwar/chronic-fatigue-syndrome.asp | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Gulf War Veterans - Public Health | last = | first = |website=U.S. Department of Veterans Affairs, Veterans Health Administration|language=en|access-date=2018-08-24}}</ref>

==Potential treatments ==
[[Vagus nerve stimulation]] has been identified as a possible treatment for GWI.<ref name="Natelson2021"/>

== Controversy ==

=== U.S. Department of Veterans Affairs' cover-up of GWI ===
* Aug 28, 1997, [http://gulfwarvets.com/arison/gws.htm The Cover-up of Gulf War Syndrome -- A Question of Natinal Integrity]<ref>{{Cite web | url=http://gulfwarvets.com/arison/gws.htm | title = The Cover-Up of Gulf War Syndrome -- A Question of National Integrity | last = Harrison III | first = H. Lindsey | date = Aug 28, 1997 | website = gulfwarvets.com|archive-url=|archive-date=|access-date=2018-08-26}}</ref>
* Mar 13, 2013, [http://gulfwarvets.com/va_cover_up_data.htm Whistleblower: Veterans Affairs Covered Up Data on Mental Health, Gulf War Syndrome]<ref>{{Cite web | url=http://gulfwarvets.com/va_cover_up_data.htm | title = Whistleblower: Veterans Affairs Covered Up Data on Mental Health, Gulf War Syndrome | last = Reno | first = Jamie | date = Mar 13, 2013 | website = gulfwarvets.com|archive-url=|archive-date=|access-date=2018-08-26}}</ref>
* Mar 13, 2013, [https://www.usatoday.com/story/news/nation/2013/03/13/whistleblower-alleges-veterans-affairs-cover-up/1979839/ Researcher says officials covered up vets' health data]<ref name="USAT-2013">{{Cite news | url=https://www.usatoday.com/story/news/nation/2013/03/13/whistleblower-alleges-veterans-affairs-cover-up/1979839/ | title = Researcher says officials covered up vets' health data | last = Kennedy | first = Kelly | date = Mar 13, 2013|work=USA TODAY|access-date=2018-08-26|archive-url=|archive-date=|language=en}}</ref> - USA Today
<blockquote>WASHINGTON — [[U.S. Department of Veterans Affairs]] officials purposely manipulate or hide data that would support the claims of veterans from Iraq and Afghanistan to prevent paying costly benefits, a former VA researcher told a House subcommittee Wednesday.</blockquote><blockquote>"If the studies produce results that do not support the office of public health's unwritten policy, they do not release them," said [[Steven Coughlin]], a former epidemiologist in the VA's public health department.</blockquote><blockquote>"This applies to data regarding adverse health consequences of environmental exposures, such as burn pits in Iraq and Afghanistan, and toxic exposures in the Gulf War," Coughlin said. "On the rare occasions when embarrassing study results are released, data are manipulated to make them unintelligible."<ref name="USAT-2013" /></blockquote>
* Apr 12, 2013, [https://www.youtube.com/watch?v=OYKMMbPp_Do&feature=youtu.be&t=546 Dr. Robert Haley, What Caused Gulf War Illness]<ref name=":9" /> (Video) Dr. Haley speaks about the United States Department of Veterans Affairs' cover-up of US Gulf War troop illness being due to environmental exposure.

* Mar 14, 2014, [https://www.forbes.com/sites/rebeccaruiz/2014/03/24/congress-confronts-va-over-gulf-war-illness-research/#7648eec961fb Congress Confronts VA Over Gulf War Illness Research]<ref>{{Cite news | url=https://www.forbes.com/sites/rebeccaruiz/2014/03/24/congress-confronts-va-over-gulf-war-illness-research/#7648eec961fb | title = Congress Confronts VA Over Gulf War Illness Research | last = Ruiz | first = Rebecca | date = Mar 24, 2014|work=Forbes|access-date=2018-08-26|archive-url=|archive-date=|language=en}}</ref>
* Mar 30, 2015, [https://www.disabledveterans.org/2015/03/30/former-va-chief-of-staff-linked-to-gulf-war-scandal/ Former VA Chief Of Staff Linked To Gulf War Scandal]<ref>{{Cite news | url=https://www.disabledveterans.org/2015/03/30/former-va-chief-of-staff-linked-to-gulf-war-scandal/ | title = Former VA Chief Of Staff Linked To Gulf War Scandal | last = Krause | first = Benjamin | date = 2015-03-30|work=DisabledVeterans.Org|access-date=2018-08-26|archive-url=|archive-date=|language=en-US}}</ref>

===Simon Wessely's past stress related beliefs in GWI ===
Professor [[Simon Wessely]], psychiatric paradigm researcher of [[chronic fatigue syndrome]], believed that [[stress]] was the common denominator of GWI.
* 2004, Interview with ''New Scientist'', [https://www.newscientist.com/article/dn6609-us-in-u-turn-over-gulf-war-syndrome/ US in U-turn over Gulf war syndrome]<ref name="NS2018" />
<blockquote>Wessely told ''New Scientist'': “There is not one single cause for the ill health,” adding that he believes we may never fully know what happened to the people who became ill.</blockquote><blockquote>Wessely asked both Gulf and non-Gulf veterans about 50 standard symptoms. “Gulf veterans reported every symptom twice as often,” he told the Lloyd inquiry. If there were a unique Gulf syndrome, some would be relatively more frequent in the Gulf group. “But they are just experiencing more ill health. There is no unique syndrome here.”</blockquote><blockquote>Wessely favours psychological explanations for Gulf war illnesses. The only thing that could have affected so many different people, he says, was stress, especially anxiety about chemical weapons, misinformation about Gulf war syndrome afterwards, and the many vaccinations Gulf troops received. His team found the more vaccine Gulf, but not non-Gulf veterans, received the more likely they are to be ill.</blockquote><blockquote>Haley says the questions in Wessely’s study were too vague to distinguish between a real syndrome and people who have, say, occasional dizziness or joint pain. He says this will confound efforts to uncover a meaningful pattern behind the veterans’ symptoms.<ref name="NS2018" /></blockquote>
* 2006, A study published in [[The Lancet|''The Lancet'']] that Wessely was involved with, ''The health of UK military personnel who deployed to the 2003 Iraq war: a cohort study''<ref name="Hotopf2006">{{Cite journal | last = Hotopf | first = Matthew | authorlink = Matthew Hotopf | last2 = Hull | first2 = Lisa | last3 = Fear | first3 = Nicola T | last4 = Browne | first4 = Tess | last5 = Horn | first5 = Oded | last6 = Iversen | first6 = Amy | last7 = Jones | first7 = Margaret | last8 = Murphy | first8 = Dominic | last9 = Bland | first9 = Duncan | date = 2006 | others=Earnshaw, Mark; Greenberg, Neil; Hacker Hughes, Jamie; Tate, Rosemary; Dandeker, Christopher; Rona, Robert; Wessely, Simon | title = The health of UK military personnel who deployed to the 2003 Iraq war: a cohort study| url = https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(06)68662-5/fulltext|journal=The Lancet|language=English|volume=367|issue=9524 | pages = 1731–1741|doi=10.1016/S0140-6736(06)68662-5|issn=0140-6736|via=}}</ref> interpretation:
<blockquote>For regular personnel in the UK armed forces, deployment to the Iraq war has not, so far, been associated with significantly worse health outcomes, apart from a modest effect on multiple physical symptoms. There is evidence of a clinically and statistically significant effect on health in reservists.<ref name="Hotopf2006" /></blockquote>
* 2006, [http://www.gresham.ac.uk/lectures-and-events/something-old-something-new-something-borrowed-something-blue-the-true-story-of Something old, something new, something borrowed, something blue: The true story of Gulf War Syndrome]<ref name=":10">{{Cite web | url=http://www.gresham.ac.uk/lectures-and-events/something-old-something-new-something-borrowed-something-blue-the-true-story-of | title = Something old, something new, something borrowed, something blue: The true story of Gulf War Syndrome|website=Gresham College|access-date=2018-08-29}}</ref>
<blockquote>So my story then: something old, we have seen some of these before; something new, there was a definite hazard with some of the precautions that were taken to protect Gulf veterans; something borrowed, soldiers can also be civilians and the things that concern us also can concern them; something blue, the psychiatry of Gulf War is the psychiatry more of [[depression]] than it is of [[Post-traumatic stress disorder|PTSD]].<ref name=":10" /></blockquote>
* 2010, A second study [https://www.kcl.ac.uk/kcmhr/publications/assetfiles/iraqafghan/Fear2010-consequencesofdeployment.pdf What are the consequences of deployment to Iraq and Afghanistan on the mental health of the UK armed forces? A cohort study]<ref name="Fear2010">{{Cite web | url=https://www.kcl.ac.uk/kcmhr/publications/assetfiles/iraqafghan/Fear2010-consequencesofdeployment.pdf | title=What are the consequences of deployment to Iraq and Afghanistan on the mental health of the UK armed forces?: A cohort study | last = Fear | first = Nicola T | last2 = Jones | first2 = Margaret | date = 2010 | website = kcl.ac.uk|others=Jones, Norman; Greenberg, Neil; Landau, Sabine; Dandeker, Christopher; Rona, Roberta J; Hotopf, Mathew; Wessely, Simon|archive-url=|archive-date=|access-date= | last3 = Murphy | first3 = Dominic | last4 = Hull | first4 = Lisa | last5 = Civerson | first5 = Amy | last6 = Coker | first6 = Bolaji | last7 = Machell | first7 = Louise | last8 = Sundin | first8 = Josefin | last9 = Woodhead | first9 = Charlotte|type=PDF}}</ref> interpretation:
<blockquote>Symptoms of common mental disorders and alcohol misuse remain the most frequently reported mental disorders in UK armed forces personnel, whereas the prevalence of probable [[post-traumatic stress disorder]] was low. These findings show the importance of continued health surveillance of UK military personnel.<ref name="Fear2010" /></blockquote>
* 2011, [https://www.bbc.com/news/uk-12195884 Two decades on, battle goes on over 'Gulf War Syndrome']<ref name="BBC-1">{{Cite news | url=https://www.bbc.com/news/uk-12195884 | title = Battle continues over Gulf War Syndrome | last = Hughes | first = Caroline Hawley and Stuart | date = 2011|work=BBC News|access-date=2018-08-26|language=en-GB}}</ref> - BBC News
<blockquote>Professor [[Simon Wessely]] is director of the King's Centre for Military Health Research in London and an adviser to the Ministry of Defence. He does not believe Gulf War Syndrome exists as a distinct illness.</blockquote><blockquote>Even so, he has no doubt that a significant number of Gulf veterans became ill as a direct result of their military service.</blockquote><blockquote>"The evidence is incontrovertible that there is a Gulf War health effect," he says.</blockquote><blockquote>"Something to do with the Gulf has affected health and no-one serious has ever disputed that.</blockquote><blockquote>"Is there a problem? Yes there is. Is it Gulf War Syndrome or isn't it? I think that's a statistical and technical question that's of minor interest."</blockquote><blockquote>The Ministry of Defence echoes Professor Wessely's view.<ref name="BBC-1" /></blockquote>

==News articles and interviews ==
*2022, [https://www.military.com/daily-news/2022/05/17/researchers-think-theyve-found-cause-of-gulf-war-illness.html Researchers Think They've Found the Cause of Gulf War Illness] - Military.com
* 2013, [https://www.usatoday.com/story/news/nation/2013/03/13/whistleblower-alleges-veterans-affairs-cover-up/1979839/ Researcher says officials covered up vets' health data] - USA Today
*2011, [https://www.bbc.com/news/uk-12195884 Two decades on, battle goes on over 'Gulf War Syndrome'] - BBC News
* 2004, [https://www.newscientist.com/article/dn6609-us-in-u-turn-over-gulf-war-syndrome/ US in U-turn over Gulf war syndrome] - New Scientist

== Notable studies ==
*2015, [[Cytokine]] expression provides clues to the pathophysiology of Gulf War illness and myalgic encephalomyelitis<ref name="GWME2015">{{Cite journal | title = Cytokine expression provides clues to the pathophysiology of Gulf War illness and myalgic encephalomyelitis | date = 2015-03-01| url = https://www.sciencedirect.com/science/article/pii/S1043466614006024|journal=Cytokine|volume=72|issue=1 | pages = 1–8 | last = Khaiboullina | first = Svetlana F. | authorlink = | last2 = DeMeirleir | first2 = Kenny L. | authorlink2 = Kenny De Meirleir | last3 = Rawat | first3 = Shanti | authorlink3 = | last4 = Berk | first4 = Grady S. | authorlink4 = | last5 = Gaynor-Berk | first5 = Rory S. | authorlink5 = | last6 = Mijatovic | first6 = Tatjana | authorlink6 = | last7 = Blatt | first7 = Natalia | last8 = Rizvanov | first8 = Albert A. | last9 = Young | first9 = Sheila G. | last10 = Lombardi | first10 = Vincent C. | authorlink10 = Vincent Lombardi|language=en|doi=10.1016/j.cyto.2014.11.019|pmc=PMC4410698|pmid=|access-date=|issn=1043-4666|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4410698/ (Full text)]
* 2017, Role of [[mitochondrial DNA]] damage and dysfunction in veterans with Gulf War Illness<ref name="Falvo2017">{{Cite journal | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5599026 | title = Role of mitochondrial DNA damage and dysfunction in veterans with Gulf War Illness | last = Falvo | first = Michael | last2 = Meyer | first2 = Joel | date = 2017 | journal=PLoS One. |volume=12|issue=9| pages = e0184832|doi=10.1371/journal.pone.0184832|pmid=
28910366|pmc=PMC5599026 | last3 = Hill | first3 = Helene Z. | last4 = Lange | first4 = Gudrun | authorlink4 = Gudrun Lange | last5 = Condon | first5 = Michael | last6 = Klein | first6 = Jacquelyn C. | last7 = Ndirangu | first7 = Duncan | last8 = Falvo | first8 = Michael J.}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5599026/pdf/pone.0184832.pdf (Full Text)]
** [https://www.research.va.gov/currents/1017-Evidence-of-DNA-damage-in-Vets-with-Gulf-War-illness.cfm Researchers find evidence of DNA damage in Vets with Gulf War illness]<ref name="DNA2017">{{Cite web | url=https://www.research.va.gov/currents/1017-Evidence-of-DNA-damage-in-Vets-with-Gulf-War-illness.cfm | title = Researchers find evidence of DNA damage in Vets with Gulf War illness | last = Richman | first = Mike | date = Oct 19, 2017 | website = U.S. Department of Veterans Affairs|language=en|archive-url=|archive-date=|access-date=2018-08-26}}</ref>
* 2018, The Multiple Hit Hypothesis for Gulf War Illness: Self-Reported Chemical/Biological Weapons Exposure and Mild Traumatic Brain Injury<ref>{{Cite journal | last = Janulewicz | first = Patricia | last2 = Krengel | first2 = Maxine | last3 = Quinn | first3 = Emily | last4 = Heeren | first4 = Timothy | last5 = Toomey | first5 = Rosemary | last6 = Killiany | first6 = Ronald | last7 = Zundel | first7 = Clara | last8 = Ajama | first8 = Joy | last9 = O'Callaghan | first9 = James | date = Nov 2018 | title = The Multiple Hit Hypothesis for Gulf War Illness: Self-Reported Chemical/Biological Weapons Exposure and Mild Traumatic Brain Injury| url = https://www.mdpi.com/2076-3425/8/11/198|journal=Brain Sciences|language=en|volume=8|issue=11 | pages = 198|doi=10.3390/brainsci8110198|pmc=|pmid=|quote=|access-date=|via=}}</ref> - [https://www.mdpi.com/2076-3425/8/11/198/htm (Full Text)]
* 2018, Fatigue in Gulf War Illness is associated with tonically high activation in the executive control network<ref name="Wylie2018">{{Cite journal | last = Wylie | first = Glenn | authorlink = | last2 = Genova | first2 = Helen | authorlink2 = | last3 = Dobryakova | first3 = Ekaterina | authorlink3 = | last4 = DeLuca | first4 = John | authorlink4 = | last5 = Chiaravalloti | first5 = Nancy | authorlink5 = | last6 = Falvo | first6 = Michael | authorlink6 = | last7 = Cook | first7 = Dane | authorlink7 = Dane Cook | date = 2018-12-11 | title = Fatigue in Gulf War Illness is associated with tonically high activation in the executive control network | url =https://www.sciencedirect.com/science/article/pii/S2213158218303899|journal=NeuroImage: Clinical|language=en|volume=|issue= | pages = 101641|doi=10.1016/j.nicl.2018.101641|issn=2213-1582|quote=|via=}}</ref> - [https://www.sciencedirect.com/science/article/pii/S2213158218303899#%21 (Full Text)]
*2018, Gulf War agents [[Mestinon|pyridostigmine bromide]] and [[permethrin]] cause hypersensitive nociception that is restored after [[vagus nerve stimulation]]<ref name="Nizamutdinov2018">{{Cite book | title = Pyridostigmine Bromide|trans-title=|chapter= | date = 2000| publisher = National Academies Press (US)|location=|isbn=|edition=|volume=|language=en | url =https://www.ncbi.nlm.nih.gov/books/NBK222848/|chapter-url= | pages = |editor-last = |editor-first = |editor1-link=|editor-last2 = |editor-first2 = |editor2-link= | last = Institute of Medicine (US) Committee on Health Effects Associated with Exposures During the Gulf War | first = | authorlink = | last2 = Fulco | first2 = Carolyn E. | authorlink2 = | last3 = Liverman | first3 = Catharyn T. | authorlink3 = | last4 = Sox | first4 = Harold C. | authorlink4 = |others=|quote=}}</ref> - [https://pubmed.ncbi.nlm.nih.gov/30273628/ (Full text)]
* 2019, [[Gastrointestinal system|Gastrointestinal]] [[Neuroimmune disease|neuroimmune]] disruption in a mouse model of Gulf War illness<ref name="Hernandez2019">{{Cite journal | last = Hernandez | first = Siomara | last2 = Fried | first2 = David E. | last3 = Grubišić | first3 = Vladimir | last4 = McClain | first4 = Jonathon L. | last5 = Gulbransen | first5 = BrianD. | date = 2019-02-21 | title = Gastrointestinal neuroimmune disruption in a mouse model of Gulf War illness| url = https://www.fasebj.org/doi/10.1096/fj.201802572R|journal=The FASEB Journal|volume=33|issue=5 | pages = 6168-6184|doi=10.1096/fj.201802572R|issn=0892-6638}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6463928/ (Full text)]
** [https://www.sciencedaily.com/releases/2019/02/190221141506.htm GI neuroimmune disruption contributes to Gulf War Illness] <blockquote>Many Persian Gulf War veterans experience Gulf War Illness (GWI), a chronic condition with symptoms ranging from gastrointestinal to neurological. While exposure to the anti-nerve gas pyridostigmine bromide (PB) is linked to the development of GWI, the exact cause and mechanisms of the illness remain unclear. Recently, an animal study tested the hypothesis that exposure to PB contributes to the development of GWI by disrupting the neural and immune systems of the intestine.<ref name=":11">{{Cite web | url=https://www.sciencedaily.com/releases/2019/02/190221141506.htm | title = GI neuroimmune disruption contributes to Gulf War Illness: Mouse model points to gastrointestinal neuroimmune disruption as contributing mechanism of Gulf War Illness | last = | first = | authorlink = |language=en|via=Science Daily for Federation of American Societies for Experimental Biology|archive-url=|archive-date=|access-date=2019-02-22}}</ref></blockquote>
*2020, In-vivo imaging of neuroinflammation in veterans with Gulf War illness<ref name="Loggia2020">{{Cite journal | last = Alshelh | first = Zeynab | authorlink = | last2 = Albrecht | first2 = Daniel S. | authorlink2 = | last3 = Bergan | first3 = Courtney | authorlink3 = | last4 = Akeju | first4 = Oluwaseun | authorlink4 = | last5 = Clauw | first5 = Daniel J. | authorlink5 = Daniel Clauw | last6 = Conboy | first6 = Lisa | authorlink6 = | last7 = Edwards | first7 = Robert R. | last8 = Kim | first8 = Minhae | last9 = Lee | first9 = Yvonne C. | date = 2020-02-04 | title = In-vivo imaging of neuroinflammation in veterans with Gulf War illness| url = http://www.sciencedirect.com/science/article/pii/S0889159119313340|journal=Brain, Behavior, and Immunity|language=en|volume=|issue= | pages = |doi=10.1016/j.bbi.2020.01.020|issn=0889-1591|pmc=|pmid=|access-date=|quote=|via= | last10 = Protsenko | first10 = Ekaterina | last11 = Napadow | first11 = Vitaly | last12 = Sullivan | first12 = Kimberly | authorlink12 = Kimberly Sullivan | author-link13 = Marco Loggia | last13 = Loggia | first13 = Marco F.}}</ref> - [https://www.sciencedirect.com/science/article/pii/S0889159119313340 (Full text)]
*2020, Acetylcholinesterase inhibitor exposures as an initiating factor in the development of Gulf War Illness, a chronic neuroimmune disorder in deployed veterans<ref>{{Cite journal|title=Acetylcholinesterase inhibitor exposures as an initiating factor in the development of Gulf War Illness, a chronic neuroimmune disorder in deployed veterans|date=Jul 2020|url=https://doi.org/10.1016/j.neuropharm.2020.108073|journal=Neuropharmacology|volume=171|pages=108073|last=Michalovicz|first=Lindsay T.|last2=Kelly|first2=Kimberly A.|last3=Sullivan|first3=Kimberly|last4=O'Callaghan|first4=James P.|doi=10.1016/j.neuropharm.2020.108073|pmc=PMC7398580|pmid=32247728|issn=0028-3908}}</ref> - [https://www.sciencedirect.com/science/article/pii/S0028390820301398?via%3Dihub (Full text)]

*2020, Exercise alters brain activation in Gulf War Illness and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="Washington2020">{{Cite journal | last = Washington | first = StuartD. | authorlink = | last2 = Rayhan | first2 = Rakib U. | authorlink2 = Rakib Rayhan | last3 = Garner | first3 = Richard | authorlink3 = | last4 = Provenzano | first4 = Destie | authorlink4 = | last5 = Zajur | first5 = Kristina | authorlink5 = | last6 = Addiego | first6 = Florencia Martinez | authorlink6 = | last7 = VanMeter | first7 = John W. | last8 = Baraniuk | first8 = James N. | author-link8 = James Baraniuk | date = 2020-07-01 | title = Exercise alters brain activation in Gulf War Illness and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome| url = https://academic.oup.com/braincomms/article/2/2/fcaa070/5885074|journal=Brain Communications|language=en|volume=2|issue=2 | pages = |doi=10.1093/braincomms/fcaa070|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://academic.oup.com/braincomms/article/2/2/fcaa070/5885074 (Full text)]
*2021, Exposure to Gulf War Illness-related agents leads to the development of chronic pain and fatigue<ref name="Nguyen2021">{{Cite journal | title = Exposure to Gulf War Illness-related agents leads to the development of chronic pain and fatigue | date = 2021-10-15| url = https://www.sciencedirect.com/science/article/pii/S0024320521008547|journal=Life Sciences|volume=283 | pages = 119867 | last = Nguyen | first = Huy | last2 = Sahbaie | first2 = Peyman | last3 = Goba | first3 = Lihle | last4 = Sul | first4 = Julian | last5 = Suzaki | first5 = Aoi | last6 = Clark | first6 = J. David | last7 = Huang | first7 = Ting-Ting|language=en|doi=10.1016/j.lfs.2021.119867|issn=0024-3205}}</ref> - [https://www.sciencedirect.com/science/article/pii/S0024320521008547 (Full text)]
*2021, Vagal nerve stimulation as a possible non-invasive treatment for chronic widespread pain in Gulf Veterans with Gulf War Illness<ref name="Natelson2021">{{Cite journal | title = Vagal nerve stimulation as a possible non-invasive treatment for chronic widespread pain in Gulf Veterans with Gulf War Illness | date = 2021-10-01| url = https://www.sciencedirect.com/science/article/pii/S0024320521007918|journal=Life Sciences|volume=282|issue= | pages = 119805 | last = Natelson | first = Benjamin H. | authorlink = Benjamin Natelson | last2 = Stegner | first2 = Aaron J. | authorlink2 = | last3 = Lange | first3 = Gudrun | authorlink3 = Gudrun Lange | last4 = Khan | first4 = Sarah | authorlink4 = | last5 = Blate | first5 = Michelle | authorlink5 = | last6 = Sotolongo | first6 = Anays | authorlink6 = | last7 = DeLuca | first7 = Michelle | last8 = Van Doren | first8 = William W. | last9 = Helmer | first9 = Drew A.|language=en|doi=10.1016/j.lfs.2021.119805|pmc=|pmid=|access-date=|issn=0024-3205|quote=|via=}}</ref> - [https://www.sciencedirect.com/science/article/pii/S0024320521007918 (Full text)]
*2021, [[Mestinon|Pyridostigmine bromide]], chlorpyrifos, and DEET combined Gulf War exposure insult depresses mitochondrial function in neuroblastoma cells<ref name="Delic2021">{{Cite journal | title = Pyridostigmine bromide, chlorpyrifos, and DEET combined Gulf War exposure insult depresses mitochondrial function in neuroblastoma cells | date = Dec 2021| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8678325/|journal=Journal of Biochemical and Molecular Toxicology|volume=35|issue=12 | pages = | last = Delic | first = Vedad | authorlink = | last2 = Karp | first2 = Joshua | authorlink2 = | last3 = Klein | first3 = Julian | authorlink3 = | last4 = Stalnaker | first4 = Katherine J. | authorlink4 = | last5 = Murray | first5 = Kathleen E. | authorlink5 = | last6 = Ratliff | first6 = Whitney A. | authorlink6 = | last7 = Myers | first7 = Catherine E. | last8 = Beck | first8 = KevinD. | last9 = Citron | first9 = Bruce A.|language=en|doi=10.1002/jbt.22913|pmc=PMC8678325|pmid=34528356|access-date=|issn=1095-6670|quote=|via=}}</ref> - [https://pubmed.ncbi.nlm.nih.gov/34358550/ (Full text)]
*2022, Evaluation of a Gene-Environment Interaction of PON1 and Low-Level Nerve Agent Exposure with Gulf War Illness: A Prevalence Case-Control Study Drawn from the U.S. Military Health Survey's National Population Sample<ref name="Haley2022">{{Cite journal | title = Evaluation of a Gene-Environment Interaction of PON1 and Low-Level Nerve Agent Exposure with Gulf War Illness: A Prevalence Case-Control Study Drawn from the U.S. Military Health Survey's National Population Sample | date = May 2022| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9093163/|journal=Environmental Health Perspectives|volume=130|issue=5 | pages = 57001 | last = Haley | first = Robert W. | last2 = Kramer | first2 = Gerald | last3 = Xiao | first3 = Junhui | last4 = Dever | first4 = Jill A. | last5 = Teiber | first5 = John F.|doi=10.1289/EHP9009|pmc=PMC9093163|pmid=35543525|issn=1552-9924|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9093163/ (Full Text)]

==See also==
* [[Vagal nerve stimulation]]
* [[Organophosphate]]
* [[Mestinon]] (pyridostigmine bromide)
* [[Vaccine]]

==Learn more==
*2019, [https://gumc.georgetown.edu/news-release/veterans-study-suggests-two-subtypes-of-gulf-war-illness/# Veterans Study Suggests Two Subtypes of Gulf War Illness] - Georgetown University Medical Center
*2019, [https://medicalxpress.com/news/2019-10-brain-chronic-fatigue-syndrome-gulf.html Brain studies show chronic fatigue syndrome and Gulf War illness are distinct conditions]
*2016, [https://www.youtube.com/watch?v=KuyKkIaoMgw&feature=youtu.be Testing nine potential treatments for Gulf War Illness pain and fatigue] - [[Jarred Younger]]
* 2015, [http://www.research.va.gov/pubs/docs/GWResearch-StrategicPlan.pdf GULF WAR RESEARCH STRATEGIC PLAN 2013-2017]<ref>{{Cite web | url=https://www.research.va.gov/pubs/docs/GWResearch-StrategicPlan.pdf | title=GULF WAR RESEARCH STRATEGIC PLAN 2013-2017 - 2015 Update | last = | first = | date = 2015 | website = U.S. Department of Veterans Affairs|archive-url=|archive-date=|url-status=|access-date=}}</ref>
*2014, [https://www.va.gov/RAC-GWVI/RACReport2014Final.pdf Gulf War Illness and the Health of Gulf War Veterans: Research Update and Recommendations, 2009-2013]
*2014, [http://www.usmedicine.com/agencies/department-of-veterans-affairs/advisory-group-exposures-not-stress-caused-gulf-war-illness/ Advisory Group: Exposures, Not Stress Caused Gulf War Illness] - U.S. Medicine
* 2008, [https://www.va.gov/RAC-GWVI/docs/Committee_Documents/GWIandHealthofGWVeterans_RAC-GWVIReport_2008.pdf Gulf War Illness and the Health of Gulf War Veterans Scientific Findings and Recommendations] - Research Advisory Committee on Gulf War Veterans' llnesses
* 2004, [https://web.archive.org/web/20041120030227/http://www.lloyd-gwii.com:80/admin/ManagedFiles/4/ReportResume.doc Independent Public Inquiry on Gulf War Illnesses] - The Lloyd Inquiry (Report Resume)

== References ==
{{reflist}}

[[Category:Diagnoses]]

Draft:Primer for Journalists

2024-06-07T01:20:48Z

Forestglip:Style, grammar, added a citation, added links

:When this page is edited, please update the [[:Category:Primers|other primers]] to keep them in sync (if that section is included in the other primers). Thank you for your many recent edits! ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 14:11, June 6, 2024 (UTC)

''Note: This page is currently being discussed [https://www.s4me.info/threads/the-mepedia-primer-for-journalists.38819/ here].''

'''Myalgic encephalomyelitis (ME)''', sometimes referred to as '''chronic fatigue syndrome (CFS)''' is a serious and long-term illness. The hallmark symptom is '''[[post-exertional malaise]] (PEM)''', a marked worsening of the illness after exertion. People with ME/CFS experience debilitating [[fatigue]], non-refreshing sleep, and problems with memory or concentration. Other common symptoms include pain, gut issues, sensitivity to light and sound, and [[orthostatic intolerance]].

{{Table of contents}}

== '''Correct representation of ME/CFS''' ==

=== '''Not chronic fatigue''' ===
ME/CFS is not the same as [[chronic fatigue]] and it is important not to confuse the conditions. ME/CFS patients are severely ill, not fatigued. Most people with chronic fatigue do not meet ME/CFS diagnostic criteria<ref name=":0">{{Cite journal|title=A community-based study of chronic fatigue syndrome|date=1999-10-11|url=https://pubmed.ncbi.nlm.nih.gov/10527290/|journal=Archives of Internal Medicine|volume=159|issue=18|pages=2129–2137|last=Jason|first=L. A.|last2=Richman|first2=J. A.|last3=Rademaker|first3=A. W.|last4=Jordan|first4=K. M.|last5=Plioplys|first5=A. V.|last6=Taylor|first6=R. R.|last7=McCready|first7=W.|last8=Huang|first8=C. F.|last9=Plioplys|first9=S.|doi=10.1001/archinte.159.18.2129|pmid=10527290|issn=0003-9926}}</ref>, and for many ME/CFS patients, fatigue is not their most debilitating symptom. It is therefore inaccurate to shorten ME/CFS to ‘chronic fatigue’ in the body of an article or its headline.

=== '''Representative images''' ===
The quality of life of persons with ME/CFS is severely reduced. The National Academy of Medicine estimates that at least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.<ref name=":2">{{Cite book|title=Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|url=http://www.ncbi.nlm.nih.gov/books/NBK274235/|publisher=National Academies Press (US)|date=2015|location=Washington (DC)|isbn=978-0-309-31689-7|pmid=25695122|series=The National Academies Collection: Reports funded by National Institutes of Health|last=Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome|last2=Board on the Health of Select Populations|last3=Institute of Medicine}}</ref> Functional impairment of ME/CFS can be greater than in disabling conditions such as [[multiple sclerosis]]<ref>{{Cite journal|title=Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls|date=2018-12|url=https://pubmed.ncbi.nlm.nih.gov/29536371/|journal=PharmacoEconomics - Open|volume=2|issue=4|pages=381–392|last=Kingdon|first=Caroline C.|last2=Bowman|first2=Erinna W.|last3=Curran|first3=Hayley|last4=Nacul|first4=Luis|last5=Lacerda|first5=Eliana M.|doi=10.1007/s41669-018-0071-6|pmc=6249197|pmid=29536371|issn=2509-4254}}</ref>, [[rheumatoid arthritis]]<ref>{{Cite journal|title=The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)|date=2015|url=https://pubmed.ncbi.nlm.nih.gov/26147503/|journal=PloS One|volume=10|issue=7|pages=e0132421|last=Falk Hvidberg|first=Michael|last2=Brinth|first2=Louise Schouborg|last3=Olesen|first3=Anne V.|last4=Petersen|first4=Karin D.|last5=Ehlers|first5=Lars|doi=10.1371/journal.pone.0132421|pmc=4492975|pmid=26147503|issn=1932-6203}}</ref> or congestive heart failure.<ref>{{Cite journal|title=Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups|date=1996-09|url=https://pubmed.ncbi.nlm.nih.gov/8873490/|journal=The American Journal of Medicine|volume=101|issue=3|pages=281–290|last=Komaroff|first=A. L.|last2=Fagioli|first2=L. R.|last3=Doolittle|first3=T. H.|last4=Gandek|first4=B.|last5=Gleit|first5=M. A.|last6=Guerriero|first6=R. T.|last7=Kornish|first7=R. J.|last8=Ware|first8=N. C.|last9=Ware|first9=J. E.|last10=Bates|first10=D. W.|doi=10.1016/S0002-9343(96)00174-X|pmid=8873490|issn=0002-9343}}</ref>

Most patients with ME/CFS can no longer work or study and are forced to reduce their social activities.<ref>{{Cite journal|title=The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database|date=2011-09-15|url=https://doi.org/10.1186/1472-6963-11-217|journal=BMC Health Services Research|volume=11|issue=1|pages=217|last=Collin|first=Simon M.|last2=Crawley|first2=Esther|last3=May|first3=Margaret T.|last4=Sterne|first4=Jonathan AC|last5=Hollingworth|first5=William|last6=UK CFS/ME National Outcomes Database|doi=10.1186/1472-6963-11-217|pmc=PMC3184626|pmid=21923897|issn=1472-6963}}</ref><ref>{{Cite journal|title=The economic impact of chronic fatigue syndrome|date=2004-06-21|url=https://doi.org/10.1186/1478-7547-2-4|journal=Cost Effectiveness and Resource Allocation|volume=2|issue=1|pages=4|last=Reynolds|first=Kenneth J.|last2=Vernon|first2=Suzanne D.|last3=Bouchery|first3=Ellen|last4=Reeves|first4=William C.|language=en|doi=10.1186/1478-7547-2-4|pmc=PMC449736|pmid=15210053|issn=1478-7547}}</ref> It is therefore inappropriate to use stock images of models in business clothing who are yawning or looking fatigued. This is not a good representation of ME/CFS.

The German association ‘Deutsche Gesellschaft für ME/CFS’ has provided [https://www.mecfs.de/stockphotos/ 32 professional photos for press use] that adequately depict the reality of people living with ME/CFS.

=== '''Not a mental disorder''' ===
Because there is no biomarker or diagnostic test, ME/CFS was incorrectly believed to be a mental disorder, an illness without disease, or a collection of symptoms that are ‘all in the mind’.<ref>{{Cite journal|title=Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients|date=2024-01|url=https://www.mdpi.com/1648-9144/60/1/83|journal=Medicina|volume=60|issue=1|pages=83|last=Thoma|first=Manuel|last2=Froehlich|first2=Laura|last3=Hattesohl|first3=Daniel B. R.|last4=Quante|first4=Sonja|last5=Jason|first5=Leonard A.|last6=Scheibenbogen|first6=Carmen|language=en|doi=10.3390/medicina60010083|pmc=10819994|pmid=38256344|issn=1648-9144}}</ref><ref>{{Cite journal|title=Ethical classification of ME/CFS in the United Kingdom|date=2019-07|url=https://pubmed.ncbi.nlm.nih.gov/30734339/|journal=Bioethics|volume=33|issue=6|pages=716–722|last=O'Leary|first=Diane|doi=10.1111/bioe.12559|pmid=30734339|issn=1467-8519}}</ref> This view is in contrast with scientific evidence and expert opinion.<ref name=":3">{{Cite journal|title=Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome|date=2019-08-13|url=https://pubmed.ncbi.nlm.nih.gov/31276153/|journal=JAMA|volume=322|issue=6|pages=499–500|last=Komaroff|first=Anthony L.|doi=10.1001/jama.2019.8312|pmid=31276153|issn=1538-3598}}</ref> The [[Centers for Disease Control and Prevention]] (CDC), for example, states: ''"ME/CFS is a biological illness, not a psychologic disorder.”''<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html|title=Clinical Overview of ME/CFS|last=CDC|date=2024-05-10|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> The [[World Health Organization]] classifies ME and CFS as Diseases of the Nervous System, using code 8E49 Postviral fatigue syndrome in the International Classification of Diseases.<ref>{{Cite web|url=https://icd.who.int/browse/2024-01/mms/en#569175314|title=ICD-11 for Mortality and Morbidity Statistics|website=icd.who.int|access-date=2024-06-06}}</ref>

== Basic facts about ME/CFS ==

=== '''Epidemiology''' ===
ME/CFS affects approximately 0.4% of the population or 1 in 250 people.<ref name=":0" /><ref name=":1">{{Cite journal|title=Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)|date=2020-02-24|url=https://pubmed.ncbi.nlm.nih.gov/32093722/|journal=Journal of Translational Medicine|volume=18|issue=1|pages=100|last=Lim|first=Eun-Jin|last2=Ahn|first2=Yo-Chan|last3=Jang|first3=Eun-Su|last4=Lee|first4=Si-Woo|last5=Lee|first5=Su-Hwa|last6=Son|first6=Chang-Gue|doi=10.1186/s12967-020-02269-0|pmc=7038594|pmid=32093722|issn=1479-5876}}</ref> The illness is much more common in women than in men: approximately 75% of patients are female.<ref name=":0" /><ref name=":1" /><ref name=":4">{{Cite journal|title=Typing myalgic encephalomyelitis by infection at onset: A DecodeME study|date=2023|url=https://pubmed.ncbi.nlm.nih.gov/37881452/|journal=NIHR open research|volume=3|pages=20|last=Bretherick|first=Andrew D.|last2=McGrath|first2=Simon J.|last3=Devereux-Cooke|first3=Andy|last4=Leary|first4=Sian|last5=Northwood|first5=Emma|last6=Redshaw|first6=Anna|last7=Stacey|first7=Pippa|last8=Tripp|first8=Claire|last9=Wilson|first9=Jim|last10=Chowdhury|first10=Sonya|last11=Lewis|first11=Isabel|doi=10.3310/nihropenres.13421.4|pmc=10593357|pmid=37881452|issn=2633-4402}}</ref> Although ME/CFS can affect people at any age, it is most common in people between the ages of 40-60 years.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/about/fast-facts-about-me-cfs.html|title=Fast Facts: ME/CFS|last=CDC|date=2024-05-31|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref>

=== '''Cause and pathology''' ===
The cause and pathology of ME/CFS remain largely unknown.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/causes/index.html|title=What Causes ME/CFS Causes|last=CDC|date=2024-06-04|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> Infections are considered a risk factor. Longitudinal studies have shown that infectious diseases such as mononucleosis increase the chances of developing ME/CFS.<ref>{{Cite journal|title=Chronic fatigue syndrome after infectious mononucleosis in adolescents|date=2009-07|url=https://pubmed.ncbi.nlm.nih.gov/19564299/|journal=Pediatrics|volume=124|issue=1|pages=189–193|last=Katz|first=Ben Z.|last2=Shiraishi|first2=Yukiko|last3=Mears|first3=Cynthia J.|last4=Binns|first4=Helen J.|last5=Taylor|first5=Renee|doi=10.1542/peds.2008-1879|pmc=2756827|pmid=19564299|issn=1098-4275}}</ref><ref>{{Cite journal|title=Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever|date=1998-12|url=https://pubmed.ncbi.nlm.nih.gov/9926075/|journal=The British Journal of Psychiatry: The Journal of Mental Science|volume=173|pages=475–481|last=White|first=P. D.|last2=Thomas|first2=J. M.|last3=Amess|first3=J.|last4=Crawford|first4=D. H.|last5=Grover|first5=S. A.|last6=Kangro|first6=H. O.|last7=Clare|first7=A. W.|doi=10.1192/bjp.173.6.475|pmid=9926075|issn=0007-1250}}</ref> Increased incidence has also been reported following [[Q fever|Q-fever]], [[Ross River virus|Ross River Virus]], [[giardiasis]], and several other infections.<ref>{{Cite journal|title=Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study|date=2006-09-16|url=https://pubmed.ncbi.nlm.nih.gov/16950834/|journal=BMJ (Clinical research ed.)|volume=333|issue=7568|pages=575|last=Hickie|first=Ian|last2=Davenport|first2=Tracey|last3=Wakefield|first3=Denis|last4=Vollmer-Conna|first4=Ute|last5=Cameron|first5=Barbara|last6=Vernon|first6=Suzanne D.|last7=Reeves|first7=William C.|last8=Lloyd|first8=Andrew|last9=Dubbo Infection Outcomes Study Group|doi=10.1136/bmj.38933.585764.AE|pmc=1569956|pmid=16950834|issn=1756-1833}}</ref> Contracting [[Severe acute respiratory syndrome coronavirus 2|SARS-CoV-2]], the virus responsible for the [[COVID-19|COVID]] pandemic, leads to a higher risk of ME/CFS, and a substantial proportion of patients with [[Long COVID]] meet ME/CFS diagnostic criteria.<ref>{{Cite journal|title=Unexplained post-acute infection syndromes|date=2022-05|url=https://www.nature.com/articles/s41591-022-01810-6|journal=Nature Medicine|volume=28|issue=5|pages=911–923|last=Choutka|first=Jan|last2=Jansari|first2=Viraj|last3=Hornig|first3=Mady|last4=Iwasaki|first4=Akiko|language=en|doi=10.1038/s41591-022-01810-6|issn=1546-170X}}</ref><ref>{{Cite journal|title=The risks of autoimmune- and inflammatory post-acute COVID-19 conditions: a network cohort study in six European countries, the US, and Korea|date=2024-05-15|url=https://www.medrxiv.org/content/10.1101/2024.05.15.24307344v1|pages=2024.05.15.24307344|last=Burkard|first=Theresa|last2=López-Güell|first2=Kim|last3=Català|first3=Martí|last4=Burn|first4=Edward|last5=Delmestri|first5=Antonella|last6=Khalid|first6=Sara|last7=Joedicke|first7=Annika M.|last8=Dedman|first8=Daniel|last9=Oyinlola|first9=Jessie O.|last10=Abellan|first10=Alicia|last11=Pérez-Crespo|first11=Laura|language=en|doi=10.1101/2024.05.15.24307344v1.supplementary-material}}</ref><ref>{{Cite journal|title=A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity|date=2022-08-30|url=https://pubmed.ncbi.nlm.nih.gov/36042189/|journal=Nature Communications|volume=13|issue=1|pages=5104|last=Kedor|first=Claudia|last2=Freitag|first2=Helma|last3=Meyer-Arndt|first3=Lil|last4=Wittke|first4=Kirsten|last5=Hanitsch|first5=Leif G.|last6=Zoller|first6=Thomas|last7=Steinbeis|first7=Fridolin|last8=Haffke|first8=Milan|last9=Rudolf|first9=Gordon|last10=Heidecker|first10=Bettina|last11=Bobbert|first11=Thomas|doi=10.1038/s41467-022-32507-6|pmc=9426365|pmid=36042189|issn=2041-1723}}</ref>

ME/CFS is suspected to have a genetic component.<ref>{{Cite journal|title=Genetic risk factors of ME/CFS: a critical review|date=2020-09-30|url=https://pubmed.ncbi.nlm.nih.gov/32744306/|journal=Human Molecular Genetics|volume=29|issue=R1|pages=R117–R124|last=Dibble|first=Joshua J.|last2=McGrath|first2=Simon J.|last3=Ponting|first3=Chris P.|doi=10.1093/hmg/ddaa169|pmc=7530519|pmid=32744306|issn=1460-2083}}</ref> The [[DecodeME|DecodeME project]] in the UK has collected samples of more than 20,000 ME/CFS patients to perform a genome-wide analysis.<ref name=":4" />

Researchers have reported abnormalities in the [[immune system]], [[Metabolic|metabolism]], [[cardiovascular system]], brain signalling, [[Endothelial dysfunction|endothelial function]], and other bodily functions of ME/CFS patients.<ref name=":2" /><ref name=":3" /> However, most of these findings are not specific to ME/CFS (they are also found in other conditions) or have not been replicated by multiple research groups.

=== '''Treatment''' ===
There are no [[U.S. Food and Drug Administration|Food and Drug Administration]] (FDA) or [[European Medicines Agency]] (EMA) approved treatments for ME/CFS. Physicians aim to reduce the impact of ME/CFS by managing or treating individual symptoms. The [[EUROMENE|European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (EUROMENE) and the US Clinician's Coalition have issued guidelines and advice on symptom management.

In the past, [[graded exercise therapy]] (GET) was a popular treatment for ME/CFS. This was based on the idea that ME/CFS is perpetuated by deconditioning and avoidance of activity. In randomized trials, however, GET failed to increase employment rates and fitness levels of ME/CFS patients. Multiple reviews have evaluated the evidence supporting GET as low quality. In surveys, ME/CFS patients reported a worsening of their health following GET. The [[National Institute for Health and Care Excellence]] (NICE) therefore actively recommends against GET and other exercise programs for ME/CFS.

[[Cognitive behavioral therapy]] (CBT) may be offered to people with a new ME/CFS diagnosis to help them cope with the disease. CBT that assumes patients have 'abnormal' illness beliefs and behaviors as an underlying cause of their ME/CFS is no longer recommended by NICE.

Surveys indicate that ME/CFS patients often find [[pacing]] useful. Pacing is a self-management strategy where activities are dosed so that patients can remain as active as possible without causing post-exertional malaise.

== Advocacy ==

=== '''Psychosomatic theories and stigma''' ===
Because blood tests often return normal and most patients are women, ME/CFS has historically been minimalized. The illness has inappropriately been called ‘[[Yuppie Flu|yuppie flu]]’ and was once dismissed as [[hysteria]]. Patients have reported harm from [[Psychosomatic illness|psychosomatic theories]] that assume ME/CFS to be caused by abnormal illness beliefs and excessive resting behavior. This has been considered a barrier to appropriate patient care.
[[File:NIH funding.png|[https://report.nih.gov/funding/categorical-spending#/ Research funding by National Institutes of Health (NIH) for ME/CFS and similar illness categories.]|thumb|800x800px]]

=== High disease burden, low funding ===
Economic costs due to ME/CFS are high. In the United States, estimates range from $36 to $51 billion per year, considering both lost wages and healthcare costs. In Europe, the illness has been estimated to affect up to 2.2% of the population<ref>{{Cite journal|title=Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology|date=2020-05-21|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7290765/|journal=Journal of Clinical Medicine|volume=9|issue=5|pages=1557|last=Estévez-López|first=Fernando|last2=Mudie|first2=Kathleen|last3=Wang-Steverding|first3=Xia|last4=Bakken|first4=Inger Johanne|last5=Ivanovs|first5=Andrejs|last6=Castro-Marrero|first6=Jesús|last7=Nacul|first7=Luis|last8=Alegre|first8=Jose|last9=Zalewski|first9=Paweł|last10=Słomko|first10=Joanna|last11=Strand|first11=Elin Bolle|doi=10.3390/jcm9051557|pmc=7290765|pmid=32455633|issn=2077-0383}}</ref> and the annual burden of ME/CFS is estimated to be 40 billion euros annually.{{Citation needed|reason=Annual euro amount|date=7 June 2024}}

Despite its high disease burden, research on ME/CFS remains underfunded. One analysis of NIH funding found that ME/CFS research only receives 7% of the amount commensurate with its disease burden. A study contracted by the European Commission also identified ME/CFS as a high-burden, under-researched medical condition.

=== '''12 May: World ME Day''' ===
ME/CFS organizations have advocated against stigma and for more recognition of the illness in research and the healthcare system. On 12 May, World ME/CFS Day, various awareness events are organized worldwide to highlight the millions of ME/CFS patients who have disappeared from public life because of their illness. These are often called ‘Millions Missing’ events, a campaign coordinated by the US-based [[The MEAction Network|ME Action Network]].

== Resources ==

=== '''Reports and guidelines''' ===

* National Academy of Medicine (NAM). [https://pubmed.ncbi.nlm.nih.gov/25695122/ Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness], 2015.
* National Institute for Health and Care Excellence (NICE). [https://www.nice.org.uk/guidance/ng206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management]. NICE guideline [NG206]. 29 October 2021.
* Institute for Quality and Efficiency in Health Care (IQWiG). [https://www.iqwig.de/en/presse/press-releases/press-releases-detailpage_93184.html ME/CFS: The current state of knowledge]. 15 May 2013.
* Centers for Disease Control and Prevention (CDC). [https://www.cdc.gov/me-cfs/about/index.html#:~:text=Myalgic%20encephalomyelitis%2Fchronic%20fatigue%20syndrome%20(ME%2FCFS)%20is,no%20known%20cause%20or%20cure. ME/CFS Basics]. 10 May 2024.

=== '''Patient organizations''' ===

* [https://worldmealliance.org/ World ME Alliance]
* [https://www.meaction.net/ ME Action Network]
* [https://meassociation.org.uk/ The ME Association]
* [https://www.mecfs.de/ Deutsche Gesellschaft für ME/CFS.]
* [https://www.europeanmealliance.org/index.shtml European ME Alliance]

=== '''ME/CFS experts''' ===

* [[Luis Nacul]]
* [[Carmen Scheibenbogen]]
* [[Lucinda Bateman]]
* [[Nancy Klimas]]
* [[Anthony Komaroff]]
* [[Chris Ponting]]
* [[Karl Tronstad]]

=== '''Examples of excellent reporting''' ===

* George Monbiot. ‘[https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal.] The Guardian, 12 march 2024.
* Ed Yong. [https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/ Fatigue Can Shatter a Person]. The Atlantic, 27 July 2023.
* David Tuller. [https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/ When the doctor doesn’t listen]. Coda, 27 Januari 2023.

== References ==

Draft:Primer for Journalists

2024-06-07T00:44:48Z

Forestglip:fixed spelling

:When this page is edited, please update the [[:Category:Primers|other primers]] to keep them in sync (if that section is included in the other primers). Thank you for your many recent edits! ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 14:11, June 6, 2024 (UTC)

''Note: This page is currently being discussed [https://www.s4me.info/threads/the-mepedia-primer-for-journalists.38819/ here].''

'''Myalgic encephalomyelitis (ME)''', sometimes referred to as '''chronic fatigue syndrome (CFS)''' is a serious and long-term illness. The hallmark symptom is '''post-exertional malaise (PEM)''', a marked worsening of the illness after exertion. People with ME/CFS experience debilitating fatigue, non-refreshing sleep, and problems with memory or concentration. Other common symptoms include pain, gut issues, sensitivity to light and sound, and orthostatic intolerance.

{{Table of contents}}

== '''Correct representation of ME/CFS''' ==

=== '''Not chronic fatigue''' ===
ME/CFS is not the same as chronic fatigue and it is important not to confuse both conditions. ME/CFS patients are severely ill not, fatigued. Most people with chronic fatigue do not meet ME/CFS diagnostic criteria<ref name=":0">{{Cite journal|title=A community-based study of chronic fatigue syndrome|date=1999-10-11|url=https://pubmed.ncbi.nlm.nih.gov/10527290/|journal=Archives of Internal Medicine|volume=159|issue=18|pages=2129–2137|last=Jason|first=L. A.|last2=Richman|first2=J. A.|last3=Rademaker|first3=A. W.|last4=Jordan|first4=K. M.|last5=Plioplys|first5=A. V.|last6=Taylor|first6=R. R.|last7=McCready|first7=W.|last8=Huang|first8=C. F.|last9=Plioplys|first9=S.|doi=10.1001/archinte.159.18.2129|pmid=10527290|issn=0003-9926}}</ref> and for many ME/CFS patients, fatigue is not their most debilitating symptom. It is therefore inaccurate to shorten ME/CFS to ‘chronic fatigue’ in the body of an article or its headline.

=== '''Representative images''' ===
The quality of life of persons with ME/CFS is severely reduced. The National Academy of Medicine estimates that at least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.<ref name=":2">{{Cite book|title=Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|url=http://www.ncbi.nlm.nih.gov/books/NBK274235/|publisher=National Academies Press (US)|date=2015|location=Washington (DC)|isbn=978-0-309-31689-7|pmid=25695122|series=The National Academies Collection: Reports funded by National Institutes of Health|last=Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome|last2=Board on the Health of Select Populations|last3=Institute of Medicine}}</ref> Functional impairment of ME/CFS can be greater than in disabling conditions such as multiple sclerosis<ref>{{Cite journal|title=Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls|date=2018-12|url=https://pubmed.ncbi.nlm.nih.gov/29536371/|journal=PharmacoEconomics - Open|volume=2|issue=4|pages=381–392|last=Kingdon|first=Caroline C.|last2=Bowman|first2=Erinna W.|last3=Curran|first3=Hayley|last4=Nacul|first4=Luis|last5=Lacerda|first5=Eliana M.|doi=10.1007/s41669-018-0071-6|pmc=6249197|pmid=29536371|issn=2509-4254}}</ref>, rheumatoid arthritis<ref>{{Cite journal|title=The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)|date=2015|url=https://pubmed.ncbi.nlm.nih.gov/26147503/|journal=PloS One|volume=10|issue=7|pages=e0132421|last=Falk Hvidberg|first=Michael|last2=Brinth|first2=Louise Schouborg|last3=Olesen|first3=Anne V.|last4=Petersen|first4=Karin D.|last5=Ehlers|first5=Lars|doi=10.1371/journal.pone.0132421|pmc=4492975|pmid=26147503|issn=1932-6203}}</ref> or congestive heart failure.<ref>{{Cite journal|title=Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups|date=1996-09|url=https://pubmed.ncbi.nlm.nih.gov/8873490/|journal=The American Journal of Medicine|volume=101|issue=3|pages=281–290|last=Komaroff|first=A. L.|last2=Fagioli|first2=L. R.|last3=Doolittle|first3=T. H.|last4=Gandek|first4=B.|last5=Gleit|first5=M. A.|last6=Guerriero|first6=R. T.|last7=Kornish|first7=R. J.|last8=Ware|first8=N. C.|last9=Ware|first9=J. E.|last10=Bates|first10=D. W.|doi=10.1016/S0002-9343(96)00174-X|pmid=8873490|issn=0002-9343}}</ref>

Most patients with ME/CFS can no longer work or study and are forced to reduce their social activities.<ref>{{Cite journal|title=The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database|date=2011-09-15|url=https://doi.org/10.1186/1472-6963-11-217|journal=BMC Health Services Research|volume=11|issue=1|pages=217|last=Collin|first=Simon M.|last2=Crawley|first2=Esther|last3=May|first3=Margaret T.|last4=Sterne|first4=Jonathan AC|last5=Hollingworth|first5=William|last6=UK CFS/ME National Outcomes Database|doi=10.1186/1472-6963-11-217|pmc=PMC3184626|pmid=21923897|issn=1472-6963}}</ref><ref>{{Cite journal|title=The economic impact of chronic fatigue syndrome|date=2004-06-21|url=https://doi.org/10.1186/1478-7547-2-4|journal=Cost Effectiveness and Resource Allocation|volume=2|issue=1|pages=4|last=Reynolds|first=Kenneth J.|last2=Vernon|first2=Suzanne D.|last3=Bouchery|first3=Ellen|last4=Reeves|first4=William C.|language=en|doi=10.1186/1478-7547-2-4|pmc=PMC449736|pmid=15210053|issn=1478-7547}}</ref> It is therefore inappropriate to use stock images of models in business clothing who are yawning or looking fatigued. This is not a good representation of ME/CFS.

The German association ‘Deutsche Gesellschaft für ME/CFS’ has provided [https://www.mecfs.de/stockphotos/ 32 professional photos for press use] that adequately depict the reality of people living with ME/CFS.

=== '''Not a mental disorder''' ===
Because there is no biomarker or diagnostic test, ME/CFS was incorrectly believed to be a mental disorder, an illness without disease, or a collection of symptoms that are ‘all in the mind’.<ref>{{Cite journal|title=Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients|date=2024-01|url=https://www.mdpi.com/1648-9144/60/1/83|journal=Medicina|volume=60|issue=1|pages=83|last=Thoma|first=Manuel|last2=Froehlich|first2=Laura|last3=Hattesohl|first3=Daniel B. R.|last4=Quante|first4=Sonja|last5=Jason|first5=Leonard A.|last6=Scheibenbogen|first6=Carmen|language=en|doi=10.3390/medicina60010083|pmc=10819994|pmid=38256344|issn=1648-9144}}</ref><ref>{{Cite journal|title=Ethical classification of ME/CFS in the United Kingdom|date=2019-07|url=https://pubmed.ncbi.nlm.nih.gov/30734339/|journal=Bioethics|volume=33|issue=6|pages=716–722|last=O'Leary|first=Diane|doi=10.1111/bioe.12559|pmid=30734339|issn=1467-8519}}</ref> This view is in contrast with scientific evidence and expert opinion.<ref name=":3">{{Cite journal|title=Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome|date=2019-08-13|url=https://pubmed.ncbi.nlm.nih.gov/31276153/|journal=JAMA|volume=322|issue=6|pages=499–500|last=Komaroff|first=Anthony L.|doi=10.1001/jama.2019.8312|pmid=31276153|issn=1538-3598}}</ref> The Centers for Disease Control and Prevention (CDC), for example, states: ''"ME/CFS is a biological illness, not a psychologic disorder.”''<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html|title=Clinical Overview of ME/CFS|last=CDC|date=2024-05-10|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> The World Health Organization classifies ME and CFS as Diseases of the Nervous System, using code 8E49 Postviral fatigue syndrome in the International Classiciation of Diseases.<ref>{{Cite web|url=https://icd.who.int/browse/2024-01/mms/en#569175314|title=ICD-11 for Mortality and Morbidity Statistics|website=icd.who.int|access-date=2024-06-06}}</ref>

== Basic facts about ME/CFS ==

=== '''Epidemiology''' ===
ME/CFS affects approximately 0.4% of the population or 1 in 250 people.<ref name=":0" /><ref name=":1">{{Cite journal|title=Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)|date=2020-02-24|url=https://pubmed.ncbi.nlm.nih.gov/32093722/|journal=Journal of Translational Medicine|volume=18|issue=1|pages=100|last=Lim|first=Eun-Jin|last2=Ahn|first2=Yo-Chan|last3=Jang|first3=Eun-Su|last4=Lee|first4=Si-Woo|last5=Lee|first5=Su-Hwa|last6=Son|first6=Chang-Gue|doi=10.1186/s12967-020-02269-0|pmc=7038594|pmid=32093722|issn=1479-5876}}</ref> The illness is much more common in women than in men: approximately 75% of patients are female.<ref name=":0" /><ref name=":1" /><ref name=":4">{{Cite journal|title=Typing myalgic encephalomyelitis by infection at onset: A DecodeME study|date=2023|url=https://pubmed.ncbi.nlm.nih.gov/37881452/|journal=NIHR open research|volume=3|pages=20|last=Bretherick|first=Andrew D.|last2=McGrath|first2=Simon J.|last3=Devereux-Cooke|first3=Andy|last4=Leary|first4=Sian|last5=Northwood|first5=Emma|last6=Redshaw|first6=Anna|last7=Stacey|first7=Pippa|last8=Tripp|first8=Claire|last9=Wilson|first9=Jim|last10=Chowdhury|first10=Sonya|last11=Lewis|first11=Isabel|doi=10.3310/nihropenres.13421.4|pmc=10593357|pmid=37881452|issn=2633-4402}}</ref> Although ME/CFS can affect people at any age, it is most common in people between the ages of 40-60 years.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/about/fast-facts-about-me-cfs.html|title=Fast Facts: ME/CFS|last=CDC|date=2024-05-31|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref>

=== '''Cause and pathology''' ===
The cause and pathology of ME/CFS remain largely unknown.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/causes/index.html|title=What Causes ME/CFS Causes|last=CDC|date=2024-06-04|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-06}}</ref> Infections are also considered a risk factor. Longitudinal studies have shown that infectious diseases such as mononucleosis increase the chances of developing ME/CFS.<ref>{{Cite journal|title=Chronic fatigue syndrome after infectious mononucleosis in adolescents|date=2009-07|url=https://pubmed.ncbi.nlm.nih.gov/19564299/|journal=Pediatrics|volume=124|issue=1|pages=189–193|last=Katz|first=Ben Z.|last2=Shiraishi|first2=Yukiko|last3=Mears|first3=Cynthia J.|last4=Binns|first4=Helen J.|last5=Taylor|first5=Renee|doi=10.1542/peds.2008-1879|pmc=2756827|pmid=19564299|issn=1098-4275}}</ref><ref>{{Cite journal|title=Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever|date=1998-12|url=https://pubmed.ncbi.nlm.nih.gov/9926075/|journal=The British Journal of Psychiatry: The Journal of Mental Science|volume=173|pages=475–481|last=White|first=P. D.|last2=Thomas|first2=J. M.|last3=Amess|first3=J.|last4=Crawford|first4=D. H.|last5=Grover|first5=S. A.|last6=Kangro|first6=H. O.|last7=Clare|first7=A. W.|doi=10.1192/bjp.173.6.475|pmid=9926075|issn=0007-1250}}</ref> Increased incidence has also been reported following Q-fever, Ross River Virus, giardiasis, and several other infections.<ref>{{Cite journal|title=Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study|date=2006-09-16|url=https://pubmed.ncbi.nlm.nih.gov/16950834/|journal=BMJ (Clinical research ed.)|volume=333|issue=7568|pages=575|last=Hickie|first=Ian|last2=Davenport|first2=Tracey|last3=Wakefield|first3=Denis|last4=Vollmer-Conna|first4=Ute|last5=Cameron|first5=Barbara|last6=Vernon|first6=Suzanne D.|last7=Reeves|first7=William C.|last8=Lloyd|first8=Andrew|last9=Dubbo Infection Outcomes Study Group|doi=10.1136/bmj.38933.585764.AE|pmc=1569956|pmid=16950834|issn=1756-1833}}</ref> Sars-Cov-2 leads to a higher risk of ME/CFS and a substantial proportion of patients with Long Covid meet ME/CFS diagnostic criteria.<ref>{{Cite journal|title=Unexplained post-acute infection syndromes|date=2022-05|url=https://www.nature.com/articles/s41591-022-01810-6|journal=Nature Medicine|volume=28|issue=5|pages=911–923|last=Choutka|first=Jan|last2=Jansari|first2=Viraj|last3=Hornig|first3=Mady|last4=Iwasaki|first4=Akiko|language=en|doi=10.1038/s41591-022-01810-6|issn=1546-170X}}</ref><ref>{{Cite journal|title=The risks of autoimmune- and inflammatory post-acute COVID-19 conditions: a network cohort study in six European countries, the US, and Korea|date=2024-05-15|url=https://www.medrxiv.org/content/10.1101/2024.05.15.24307344v1|pages=2024.05.15.24307344|last=Burkard|first=Theresa|last2=López-Güell|first2=Kim|last3=Català|first3=Martí|last4=Burn|first4=Edward|last5=Delmestri|first5=Antonella|last6=Khalid|first6=Sara|last7=Joedicke|first7=Annika M.|last8=Dedman|first8=Daniel|last9=Oyinlola|first9=Jessie O.|last10=Abellan|first10=Alicia|last11=Pérez-Crespo|first11=Laura|language=en|doi=10.1101/2024.05.15.24307344v1.supplementary-material}}</ref><ref>{{Cite journal|title=A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity|date=2022-08-30|url=https://pubmed.ncbi.nlm.nih.gov/36042189/|journal=Nature Communications|volume=13|issue=1|pages=5104|last=Kedor|first=Claudia|last2=Freitag|first2=Helma|last3=Meyer-Arndt|first3=Lil|last4=Wittke|first4=Kirsten|last5=Hanitsch|first5=Leif G.|last6=Zoller|first6=Thomas|last7=Steinbeis|first7=Fridolin|last8=Haffke|first8=Milan|last9=Rudolf|first9=Gordon|last10=Heidecker|first10=Bettina|last11=Bobbert|first11=Thomas|doi=10.1038/s41467-022-32507-6|pmc=9426365|pmid=36042189|issn=2041-1723}}</ref>

ME/CFS is suspected to have a genetic component.<ref>{{Cite journal|title=Genetic risk factors of ME/CFS: a critical review|date=2020-09-30|url=https://pubmed.ncbi.nlm.nih.gov/32744306/|journal=Human Molecular Genetics|volume=29|issue=R1|pages=R117–R124|last=Dibble|first=Joshua J.|last2=McGrath|first2=Simon J.|last3=Ponting|first3=Chris P.|doi=10.1093/hmg/ddaa169|pmc=7530519|pmid=32744306|issn=1460-2083}}</ref> The [[DecodeME|DecodeME project]] in the UK has collected samples of more than 20,000 ME/CFS patients to perform a genome-wide analysis.<ref name=":4" />

Researchers have reported abnormalities in the immune system, metabolism, cardiovascular system, brain signalling, endothelial function, and other bodily functions of ME/CFS patients.<ref name=":2" /><ref name=":3" /> However, most of these findings are not specific to ME/CFS (they are also found in other conditions) or have not been replicated by multiple research groups.

=== '''Treatment''' ===
There are no Food and Drug Administration (FDA) or European Medicines Agency (EMA) approved treatments for ME/CFS. Physicians aim to reduce the impact of ME/CFS by managing or treating individual symptoms. The European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) and the US Clinician's Coaltion have issued guidelines and advice on symptom management.

In the past, graded exercise therapy (GET) was a popular treatment for ME/CFS. This was based on the idea that ME/CFS is perpetuated by deconditioning and avoidance of activity. In randomized trials, however, GET failed to increase employment rates and fitness levels of ME/CFS patients. Multiple reviews have evaluated the evidence supporting GET as low quality. In surveys, ME/CFS patients reported a worsening of their health following GET. The National Institutes of Health and Care Excellence (NICE) therefore actively recommends against GET and other exercise programs for ME/CFS.

Cognitive behavioral therapy (CBT) may be offered to people with a new ME/CFS diagnosis to help them cope with the disease. CBT that assumes patients have 'abnormal' illness beliefs and behaviors as an underlying cause of their ME/CFS is no longer recommended by NICE.

Surveys indicate that ME/CFS patients often find pacing useful. Pacing is a self-management strategy where activities are dosed so that patients can remain as active as possible without causing postexertional malaise.

== Advocacy ==

=== '''Psychosomatic theories and stigma''' ===
Because blood tests often return normal and most patients are women, ME/CFS has historically been minimalized. The illness has inappropriately been called ‘yuppie flu’ and was once dismissed as hysteria. Patients have reported harm from psychosomatic theories that assume ME/CFS to be caused by abnormal illness beliefs and excessive resting behavior. This has been considered a barrier to appropriate patient care.
[[File:NIH funding.png|[https://report.nih.gov/funding/categorical-spending#/ Research funding by National Institutes of Health (NIH) for ME/CFS and similar illness categories.]|thumb|800x800px]]

=== High disease burden low funding ===
Economic costs due to ME/CFS are high. In the United States, estimates range from $36 to $51 billion per year, considering both lost wages and healthcare costs. In Europe, the illness affects approximately 2 European citizens and the annual burden of ME/CFS is estimated to be 40 billion euros annually.

Despite its high disease burden, research on ME/CFS remains underfunded. One analysis of NIH funding found that ME/CFS research only receives 7% of the amount commensurate with its disease burden. A study contracted by the European Commission also identified ME/CFS as a high-burden, under-researched medical condition.

=== '''12 May: World ME Day''' ===
ME/CFS organizations have advocated against stigma and for more recognition of the illness in research and the healthcare system. On 12 May, World ME/CFS Day, various awareness events are organized worldwide to highlight the millions of ME/CFS patients who have disappeared from public life because of their illness. These are often called ‘Millions Missing’ events, a campaign coordinated by the US-based ME Action Network.

== Resources ==

=== '''Reports and guidelines''' ===

* National Academy of Medicine (NAM). [https://pubmed.ncbi.nlm.nih.gov/25695122/ Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness], 2015.
* National Institute for Health and Care Excellence (NICE). [https://www.nice.org.uk/guidance/ng206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management]. NICE guideline [NG206]. 29 October 2021.
* Institute for Quality and Efficiency in Health Care (IQWiG). [https://www.iqwig.de/en/presse/press-releases/press-releases-detailpage_93184.html ME/CFS: The current state of knowledge]. 15 May 2013.
* Centers for Disease Control and Prevention (CDC). [https://www.cdc.gov/me-cfs/about/index.html#:~:text=Myalgic%20encephalomyelitis%2Fchronic%20fatigue%20syndrome%20(ME%2FCFS)%20is,no%20known%20cause%20or%20cure. ME/CFS Basics]. 10 May 2024.

=== '''Patient organizations''' ===

* [https://worldmealliance.org/ World ME Alliance]
* [https://www.meaction.net/ ME Action Network]
* [https://meassociation.org.uk/ The ME Association]
* [https://www.mecfs.de/ Deutsche Gesellschaft für ME/CFS.]
* [https://www.europeanmealliance.org/index.shtml European ME Alliance]

=== '''ME/CFS experts''' ===

* Luis Nacul
* Carmen Scheibenbogen
* Lucinda Bateman
* Nancy Klimas
* Anthony Komaroff
* Chris Ponting
* Karl Tronstad

=== '''Examples of excellent reporting''' ===

* George Monbiot. ‘[https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal.] The Guardian, 12 march 2024.
* Ed Yong. [https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/ Fatigue Can Shatter a Person]. The Atlantic, 27 July 2023.
* David Tuller. [https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/ When the doctor doesn’t listen]. Coda, 27 Januari 2023.

== References ==

User:Forestglip/test

2024-06-06T16:52:40Z

Forestglip:Testing user subpages

Test

Primer for journalists

2024-06-06T10:55:00Z

Forestglip:capitalize page title

{{mbox|text= Editors: Edits to this Primer may require the same edits to the other [[:Category:Primers|Primers]].}}
''Note: This page is slightly outdated, long, and slightly disordered. We are working on revamping it at [[Draft:Primer for Journalists]].''

[[Myalgic encephalomyelitis]] (ME), sometimes referred to as [[chronic fatigue syndrome|myalgic encephalomyelits/chronic fatigue syndrome]] (ME/CFS), and not to be confused with [[chronic fatigue]] (CF), is widely misunderstood. In this '''Primer for journalists''', we provide evidence-based statements (with links to further reading & sources) to support journalists writing about the disease. '''Chronic Fatigue Syndrome''' must never be shortened to ''Chronic Fatigue'' in the body of an article or its headline. This has caused much confusion for readers who do not understand ME/CFS is a debilitating lifelong illness and it is not the same as [[chronic fatigue]] (CF); CF is a symptom of many different illnesses. Although the [[Fukuda criteria|Fukuda]]<ref name="fukuda1994">{{Cite journal | last = Fukuda | first = K. | authorlink = Keiji Fukuda | last2 = Straus | first2 = S.E. | authorlink2 = Stephen Straus | last3 = Hickie | first3 = I. | authorlink3 = Ian Hickie | last4 = Sharpe | first4 = M.C. | authorlink4 = Michael Sharpe | last5 = Dobbins | first5 = J.G. | authorlink5 = James Dobbins | last6 = Komaroff | first6 = A. | authorlink6 = Anthony Komaroff | date = 1994-12-15 | title = The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group | url = https://www.researchgate.net/profile/Michael_Sharpe2/publication/247808895_The_Chronic_Fatigue_Syndrome_A_Comprehensive_Approach_to_Its_Definition_and_Study/links/0c96053201643bfc4b000000/The-Chronic-Fatigue-Syndrome-A-Comprehensive-Approach-to-Its-Definition-and-Study.pdf|journal=Annals of Internal Medicine|volume=121|issue=12 | pages = 953–959 |issn=0003-4819|pmid=7978722|via=|doi=10.7326/0003-4819-121-12-199412150-00009|publisher=American College of Physicians}}</ref> and the [[Oxford criteria|Oxford Criteria]]<ref name="PMC1293107">{{Cite journal | title = A report--chronic fatigue syndrome: guidelines for research. | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/|journal=Journal of the Royal Society of Medicine | date = Feb 1991|issn=0141-0768|pmc=1293107|pmid=1999813 | pages = 118–121 |volume=84|issue=2 | first = MC | last = Sharpe | first2 = LC | last2 = Archard | first3 = JE | last3 = Banatvala | first4 = LK | last4 = Borysiewicz | first5 = AW | last5 = Clare | first6 = A | last6 = David | first7 = RH | last7 = Edwards | first8 = KE | last8 = Hawton | first9 = HP | last9 = Lambert}}</ref> were previously used for diagnosing ME/CFS, they are now regarded as overly broad, there being criticism that patients were being [[misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome|misdiagnosed]] in both clinical and research settings as having ME/CFS when in fact they were suffering from the symptom CF or another fatiguing diagnosis.<ref name="Vink2019">{{Cite journal | last = Vink | last2 = Vink-Niese | date = 2019-09-20 | title = Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies | url = https://www.mdpi.com/2075-4418/9/4/124|journal=Diagnostics|language=en|volume=9|issue=4|page=124|doi=10.3390/diagnostics9040124|issn=2075-4418 | first = Mark | first2 = Alexandra|pmc=|pmid=|quote= | author-link = Mark Vink | authorlink2 = Alexandra Vink-Niese|access-date=|via=}}</ref><ref name="Carruthers, 2003" /><ref name="ICC2011primer" /><ref>{{Cite web | title = What Does a True ME Definition Look Like? | url = https://www.meadvocacy.org/what_does_a_true_me_definition_look_like|website=MEadvocacy.org|access-date=2019-01-25 | first = | last = }}</ref><ref name="fukuda1994" /><ref>[http://theargusreport.com/us-nih-report-calls-uk-definition-mecfs-scrapped/ US NIH Report Calls for UK Definition of ME/CFS to be Scrapped - The Argus Report By: Penny Swift]</ref><ref>{{Cite web | url = http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/|website=occupyme.net|access-date=2019-01-25 | title = AHRQ Evidence Review Changes Its Conclusions | date = Aug 16, 2016 | last = Spotila | first=Jennie | authorlink=Jennie Spotila | last2 = Dimmock | first2 = Mary | authorlink2 = Mary Dimmock|archive-url=|archive-date=}}</ref>

In the past, there have been media reports of athletes diagnosed with ME or CFS who have recovered in a relatively short period of time after rest, supplementation, and diet changes;<ref name="Inews2018">{{Cite news |url = https://inews.co.uk/news/health/marathon-runner-quit-work-me-cfs-diet-change/ | title = Marathon runner forced to quit work after developing ME claims diet change gave him his life back | first = Claudia | last = Tanner|publisher =iNews | date = 2018}}</ref><ref name="Times2017">{{Cite news | url = https://www.thetimes.co.uk/article/muslim-fighter-with-me-who-left-an-arranged-marriage-to-win-world-title-svxhhzt57 | title = Muslim fighter with ME who left an arranged marriage to win world | last = Broadbent | first = Rick | date = 2017-12-02|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref><ref name="ABC2018">{{Cite news |url = http://www.abc.net.au/7.30/committee-reviews-potentially-harmful-and-old/10010408 |at=6mins 18s| title = Committee reviews 'potentially harmful and old fashioned' chronic fatigue treatments|publisher =ABC News | first =Andy|last = Park | first2 = Clare | last2 = O'Halloran}}</ref><ref name="London2019">{{Cite news | url = https://www.thetimes.co.uk/article/nathan-douglas-london-2012-was-the-darkest-period-of-my-life-vxt5gftcx | title = Nathan Douglas: London 2012 was the darkest period of my life | last = Broadbent | first = Rick | date = 2019-02-27|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref> these athletes may have had [[overtraining syndrome]] (which has the symptom of [[chronic fatigue]]) and not ME or CFS,<ref name="spence"/> while people with adrenal failure, [[idiopathic chronic fatigue]] or other fatiguing illnesses may be erroneously diagnosed with CFS.<ref name="recovery"/><ref name="Anoop2012"/><ref name="ICC" /> ME and CFS in professional athletes is normally a career-ending diagnosis.<ref name="Squash" /><ref name="Annadale"/><ref name="Shattered"/><ref name="Olympian"/><ref name="FIFA"/><ref name="olaf"/><ref name="LA"/>

<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="''What is ME/CFS'' By Open Medicine Foundation - OMF. Linda Tannenbaum, Founder & CEO/President, talks about ME/CFS and how OMF is leading research and delivering hope (2018)">https://www.youtube.com/watch?v=pqDubEeIBtA</embedvideo>

The core [[List of symptoms in ME CFS|ME/CFS symptoms]] are: [[post-exertional malaise]] (PEM); [[chronic fatigue]] (CF); [[unrefreshing sleep]]/[[Sleep dysfunction|sleep problems]]; and [[Cognitive dysfunction|cognitive impairment]]/[[brain fog]] and/or [[orthostatic intolerance]] (OI).<ref name="symptoms"/><ref name="clinicians">{{Cite web | url = https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness {{!}} Clinicians Guide | last = | first = | date = 2015 | publisher=Nation Academies Press|archive-url=|archive-date=|access-date= | authorlink = }}</ref>{{Rp|9-10}} A patient can have many more symptoms<ref name="what-is">{{Cite web | url = https://www.omf.ngo/what-is-mecfs/ | title = What is ME/CFS? | last = | first = | date = |archive-url=|archive-date=|access-date= | authorlink = |website=[[Open Medicine Foundation]]}}</ref> and meet different criteria. [[Systemic Exertion Intolerance Disease]] (SEID), an ME/CFS criterion, allows for a patient to be [[Systemic Exertion Intolerance Disease#Diagnostic criteria|diagnosed with the minimum core symptoms]]<ref name="DiagnosticAlgorithm">{{Cite web | url = https://www.nap.edu/resource/19012/MECFS_DiagnosticAlgorithm.jpg | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - Diagnostic Algorithm | last = | first = | author-link =| date = 2015 | website = nap.edu|archive-url=https://web.archive.org/web/20190528223706/https://www.nap.edu/resource/19012/MECFS_DiagnosticAlgorithm.jpg|archive-date=2019-05-28|access-date=}}</ref> and the patient may have other symptoms.<ref name="clinicians"/<ref name="IOM2015">{{Cite web | url = https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title = Beyond Myalgid Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness - Clinician's Guide | date = 2015 | access-date=|website=nap.edu | last = | first = | authorlink = |archive-url=|archive-date= | page = 9}}</ref> The [[Canadian Consensus Criteria]] (CCC) requires the core symptoms and [[Nervous system|neurological]], [[Autonomic nervous system|autonomic]], [[Neuroendocrine system|neuroendocrine]], [[immune system]], and [[myalgia]] symptoms to meet [[Canadian Consensus Criteria#Definition|its ME/CFS diagnostic criteria]].<ref name="Carruthers, 2003">{{Cite journal | last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers | last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson | last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas | last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner | last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested | last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry | last9 =Joshi | first9 = Pradip | authorlink9 = Pradip Joshi | last10 = Powles | first10 = AC Peter | authorlink10 = A C Peter Powles | last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey | last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols | journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | pages = 7-115 | date = 2003 | pmid = | doi = 10.1300/J092v11n01_02
| url = http://phoenixrising.me/wp-content/uploads/Canadian-definition.pdf }}</ref> The [[International Consensus Criteria]] (ICC) is used to diagnose [[myalgic encephalomyelitis]] (ME) which requires the core symptoms and neurological, immune/[[Gastrointestinal system|gastrointestinal]]/genitourinary impairment, and [[portal:Energy metabolism|energy metabolism]]/[[Ion transportation|ion transport]] impairment [[International Consensus Criteria#Criteria|symptoms for a diagnosis]].<ref name="ICC">{{Cite journal | last = Carruthers | first=Bruce M. | author-link = Bruce Carruthers | last2 = van de Sande | first2 = Marjorie I. | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Klimas | first4 = Nancy G. | author-link4 = Nancy Klimas | last5 = Broderick | first5 = Gordon | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = Terry | authorlink6 = Terry Mitchell | last7 = Staines | first7 = Donald | author-link7 = Donald Staines | last8 = Powles | first8 = A.C. Peter | authorlink8 = A C Peter Powles | last9 = Speight | first9 = Nigel | authorlink9 = Nigel Speight | last10 = Vallings | first10 = Rosamund | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = Lucinda | authorlink11 = Lucinda Bateman | last12 = Baumgarten-Austrheim | first12 = Barbara | author-link12 = Barbara Baumgarten-Austrheim | last13 = Bell | first13 = David | author-link13 = David Bell | last14 = Carlo-Stella | first14 = Nicoletta | author-link14 = Nicoletta Carlo-Stella | last15 = Chia | first15 = John | author-link15 = John Chia | last16 = Darragh | first16 = Austin | author-link16 = Austin Darragh | last17 = Jo | first17 = Daehyun | author-link17 = Daehyun Jo | last18 = Lewis | first18 = Donald | author-link18 = Donald Lewis | last19 = Light | first19 = Alan | author-link19 = Alan Light | last20 = Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21 = Mena | first21 = Ismael | author-link21 = Ismael Mena | last22 = Mikovits | first22 = Judy | author-link22 = Judy Mikovits | last23 = Miwa | first23 = Kunihisa | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = Modra | author-link24 = Modra Murovska | last25 = Pall | first25 = Martin | author-link25 = Martin Pall | last26 = Stevens | first26 = Staci | author-link26 = Staci Stevens | date = 2011-08-22 | title=Myalgic encephalomyelitis: International Consensus Criteria | url = https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.2011.02428.x|journal=Journal of Internal Medicine|language=en|volume=270|issue=4|pages=327–338|doi=10.1111/j.1365-2796.2011.02428.x|issn=0954-6820|pmc=3427890|pmid=21777306|via=}}</ref>

The acronym ME/CFS is widely used in research, by clinicians, patient organizations, and patients.

"The most common overlapping condition with ME/CFS is [[fibromyalgia]]."<ref name="ICC2011primer">{{citation | last1 = Carruthers | first1 = BM | authorlink1 = Bruce Carruthers | last2 = van de Sande | first2 = MI | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = KL | authorlink3 = Kenny de Meirleir | last4 = Klimas | first4 = NG | authorlink4 = Nancy Klimas | last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick | last6 = Mitchell | first6 = T | authorlink6 = Terry Mitchell | last7 = Staines | first7 = D | authorlink7 = Donald Staines | last8 = Powles | first8 = ACP | authorlink8 = A C Peter Powles | last9 = Speight | first9 = N | authorlink9 = Nigel Speight | last10 = Vallings | first10 = R | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = L | authorlink11 = Lucinda Bateman | last12 = Bell | first12 = DS | authorlink12 = David Bell | last13 = Carlo-Stella | first13 = N | authorlink13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | authorlink14 = John Chia | last15 = Darragh | first15 = A | authorlink15 = Austin Darragh | last16 = Gerken | first16 = A | authorlink16 = Anne Gerken | last17 = Jo | first17 = D | authorlink17 = Daehyun Jo | last18 = Lewis | first18 = DP | authorlink18 = Donald Lewis | last19 = Light | first19 = AR | authorlink19 = Alan Light | last20 = Light | first20 = KC | authorlink20 = Kathleen Light | last21 = Marshall-Gradisnik | first21 = S | authorlink21 = Sonya Marshall-Gradisnik | last22 = McLaren-Howard | first22 = J | authorlink22 = John McLaren-Howard | last23 = Mena | first23 = I | authorlink23 = Ismael Mena | last24 = Miwa | first24 = K | authorlink24 = Kunihisa Miwa | last25 = Murovska | first25 = M | authorlink25 = Modra Murovska | last26 = Stevens | first26 = SR | authorlink26 = Staci Stevens | title = Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners | date = 2012 | isbn = 978-0-9739335-3-6 | url = http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf}}</ref><ref name="Primer2014"/><ref name="Jason2001">{{Cite journal | last= Jason | first = Leonard | last2 = Taylor | first2 = R.R. | last3 = Kennedy | first3 = C.L. | last4 = Song | first4 = S | last5 = Johnson | first5 = D | last6 = Torres | first6 = S.R. | date = 2001-01-01 | title = Chronic fatigue syndrome: Comorbidity with fibromyalgia and psychiatric illness | url = https://www.researchgate.net/publication/285787383_Chronic_fatigue_syndrome_Comorbidity_with_fibromyalgia_and_psychiatric_illness|journal=Medicine and Psychiatry|volume=4 | pages = 29–34}}</ref> While some have posited ME/CFS and fibromyalgia are variants of the same illness, [[Benjamin Natelson]], MD summoned considerable amounts of data that suggest the two illnesses differ with different pathophysiologic processes leading to different treatments.<ref>{{Cite journal | last = Natelson | first = Benjamin H. | date = 2019-02-19 | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia: Definitions, Similarities, and Differences | url = https://www.clinicaltherapeutics.com/article/S0149-2918(19)30003-7/abstract|journal=Clinical Therapeutics|language=English|volume=41|issue=4 | page = 612|doi=10.1016/j.clinthera.2018.12.016|issn=0149-2918|pmid=30795933}}</ref>

While ME/CFS is recognised as a physical disease by researchers, a [[Psychologization|psychiatric approach]] was taken with ME/CFS in the past, and some clinicians are still using this practice. At this time there are no approved drug treatments. In the past, [[Graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) were used for ME/CFS. They are now discouraged or banned by major health guidelines as they were based on a psychological view of the illness and have lead to patient harm.<ref>{{Cite web|url=https://www.nice.org.uk/guidance/ng206|title=Overview {{!}} Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management {{!}} Guidance {{!}} NICE|date=2021-10-29|website=www.nice.org.uk|access-date=2024-05-19}}</ref><ref name="etiology" />The [[Centers for Disease Control and Prevention]] (CDC) website states "ME/CFS is a '''biological illness''', not a psychologic disorder" and impacts multiple body systems.<ref name="etiology">{{Cite web | title = Etiology and Pathophysiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html|website=[[Centers for Disease Control and Prevention]] | date = 2018-11-08| access-date = 2019-01-22 |language=en-us}}</ref> The CDC recognizes the hallmark symptom of PEM which is a worsening of symptoms after physical, mental or emotional exertion<ref name="symptoms">{{Cite web | title = Symptoms of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-01-22|language=en-us}}</ref> and says [[ME/CFS]] is a "disabling and complex disease."<ref name="whatis">{{Cite web | url = https://www.cdc.gov/me-cfs/about/index.html | title = What is ME/CFS? {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-04-12}}</ref>

[[File:SEID algorithm.JPG|400px|thumb|right|Diagnostic Algorithm for [[Systemic Exertion Intolerance Disease|SEID]]'s minimum [[List of symptoms in ME CFS#Systemic Exertion Intolerance Disease (SEID) symptom list|ME/CFS core symptoms]]]]

==What do we know?==
ME is a debilitating illness that has been recognized as a neurological disease by the [[World Health Organization]] (WHO) since 1969.<ref name="icd10">{{Cite book | url = https://apps.who.int/iris/bitstream/handle/10665/70934/ICD_10_1969_eng_v2a.pdf?sequence=3&isAllowed=y | title = International Classification of Diseases | last = World Health Organization | first = |publisher=WHO| year = 1969|isbn=|editor-link=|edition=Eighth revision|volume=2|location=Geneva|pages=173|chapter=|quote=Encephalomyelitis (chronic),<br>(myalgic, benign) 323|editor-last2=|editor-link2=}}</ref>

It is a systemic [[Neuro-immune disease|neuroimmune]] disease characterized by [[post-exertional malaise]] (PEM) (a severe worsening of symptoms after even minimal [[exertion]]). It causes dysregulation of both the [[immune system]] and the [[nervous system]]. The effects of ME are devastating enough to leave [[Severe and very severe ME|25% of patients housebound or bedbound]]. For moderate to severe patients, the disability of living with ME is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades.

[[ME/CFS]] costs the US economy up to $24 billion per year in direct medical costs, and lost production.<ref name="IOM2015MECFS" /> Despite this, funding for research is not commensurate with the level of disease burden. In the 2015 financial year, the [[National Institutes of Health]] (NIH) provided only $5 million in research funding for ME/CFS, which is less funding than hayfever. This is in stark contrast to funding levels for other similarly disabling illnesses, like [[multiple sclerosis]] ($105 million) and HIV/AIDS ($3 billion).{{Citation needed|reason=Reference needed for NIH funding levels | date = 4 November 2019}} The [[Institute of Medicine]], a special advisory committee of the [[U.S. Department of Health and Human Services]] (HHS) (ref: [[Chronic Fatigue Syndrome Advisory Committee|CFSAC]] recommendations) and [[NIH]] expert advisory panel agree that it is imperative to increase research funding into ME/CFS.<ref name="NIHP2PFIN" />

== Disease onset and course of illness==
[[Onset of ME/CFS|ME/CFS can begin]] from many acute/sudden<ref name="Chu2019">{{Cite journal | last = Chu | first = Lily | authorlink = Lily Chu | last2 = Valencia | first2 = Ian J. | authorlink2 = Ian Valencia | last3 = Garvert | first3 = Donn W. | authorlink3 = | last4 = Montoya | first4 = Jose G. | authorlink4 = Jose Montoya | authorlink5 = | date = Jan 14, 2019 | title = Onset patterns and course of myalgic encephalomyelitis/chronic fatigue syndrome | url = https://www.frontiersin.org/articles/10.3389/fped.2019.00012/abstract|journal=Frontiers in Pediatrics|volume=|issue=|pages=|doi=10.3389/fped.2019.00012|quote=|via=}}</ref> events: usually [[Viral onset hypothesis|viral]] or [[Bacterial disease onset|bacterial]] infections, but also [[trauma]], surgery or childbirth, [[anaphylaxis|allergic reaction]], and [[stress]].<ref>{{Cite web | url = https://www.cdc.gov/grand-rounds/pp/2016/20160216-presentation-chronic-fatigue-H.pdf | title = CDC Public Health Grand Rounds - Chronic Fatigue Syndrome - Advancing Research and Clinical Education | last = | first = | author-link =| date = |website=[[Centers for Disease Control and Prevention]] | page = 6|archive-url=|archive-date=|access-date=}}</ref> There is also a gradual onset in some people,<ref name="Chu2019" /><ref name="clinical">{{Cite web | url = https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/index.html | title = Presentation and Clinical Course of ME/CFS {{!}} Information for Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS | date = 2018-12-12 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-02-07}}</ref> that is not attributed to any one event. Occasionally, ME/CFS has been triggered by [[Environmentally acquired illness|environmental toxins]] or the receipt of an [[Vaccine|immunizing injection]].<ref>[https://www.masscfids.org/images/pdf/Primer_2014.pdf Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc]</ref> Some say that the disease [[Myalgic encephalomyelitis|ME]] always has an acute/sudden [[Infection|infectious]] onset.<ref name="Evans2018">{{Cite journal | last = Evans | first = Meredyth | authorlink = Meredyth Evans | authorlink2 = Leonard Jason | date = 2018 | title = Onset patterns of chronic fatigue syndrome and myalgic encephalomyelitis | url = https://www.openaccessjournals.com/articles/Onset%20patterns%20of%20chronic%20fatigue%20syndrome%20and%20myalgic%20encephalomyelitis.pdf|journal=Research on Chronic Diseases|volume=|issue=|pages=2|quote=|via= | last2 = Jason | first2 = Leonard}}</ref>

The disease [[ME/CFS]] is often diagnosed when a person does not recover from a [[flu-like illness]], [[mononucleosis]] or another [[HHV|herpesvirus]], [[Q fever]], an unidentified [[virus]], or [[:Category:Infectious agents|other infection]], and meets one or more [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome|diagnostic criteria for either ME, CFS, or ME/CFS]].<ref name="IOM2015"/>{{Rp|157-158}}<ref>[http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/ The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014]</ref> Patients experience [[List of symptoms in ME CFS|numerous symptoms]] and disease severity which fluctuate from day to day, week to week, month to month, year to year, and even decade to decade. Furthermore, symptoms and disease severity vary among patients.<ref name="Primer2014"/><ref name="WebMD">[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref>

The CDC recognizes that there can be different causes and it is possible that two or more things could cause the illness. Areas of research include infections, [[immune system]] changes, physical or psychological [[stress]] affecting body chemistry, changes in [[Metabolic|energy production]], and a possible [[Genetics of chronic fatigue syndrome|genetic link]].<ref name="causes">{{Cite web | title = Possible Causes {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/about/possible-causes.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-01-27|language=en-us}}</ref><ref name="etiology" /> The CDC notes there are abnormalities with the immune system, [[Metabolic|cellular metabolism]], neuroendocrine disturbances, and [[blood pressure]] or heart rate regulation.<ref name="etiology" />
===Not a mental health disorder===
In the past, CFS was believed to be a mental health disorder. This is why the CDC now states: "ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems."<ref name="etiology" />

===No clear evidence that ME/CFS is contagious===
[[:Category:Infectious agents|Infectious episodes]] have led to [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|outbreaks]] over the years and 72% of ME/CFS patients report an [[Onset of ME/CFS|onset]] of a viral or bacterial infection.<ref>{{Cite web | url = https://www.cdc.gov/grand-rounds/pp/2016/20160216-presentation-chronic-fatigue-H.pdf | title = CDC Public Health Grand Rounds - Chronic Fatigue Syndrome - Advancing Research and Clinical Education | last = | first = | author-link =| date = |website=cdc.gov | page = 6|archive-url=|archive-date=|access-date=}}</ref> Nowadays, the vast majority of ME/CFS cases are sporadic rather than epidemic - although some outbreaks have been caused by known viruses such as the [[2003 Hong Kong outbreak|SARS pandemic]] and [[2019 Coronavirus pandemic outbreak|COVID-19]] - there is no clear evidence that sporadic ME/CFS cases are contagious.<ref name="pediatricprimer">{{Cite journal | last = Rowe | first = Katherine S. | last2 = Vallings | first2 = Rosamund | last3 = Stewart | first3 = Julian M. | last4 = Speight | first4 = Nigel | last5 = Schwartz | first5 = Malcolm S. | last6 = Medow | first6 = Marvin S. | last7 = Gurwitt | first7 = Alan | last8 = Friedman | first8 = Kenneth J. | last9 = Underhill | first9 = Rosemary A. | date = 2017 | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer |url = https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5|doi=10.3389/fped.2017.00121|issn=2296-2360}}</ref>

Families, partners, and friends do not report contracting ME/CFS from someone with the disease nor do patients report passing it on to others.<ref>{{Cite web | url = http://forums.prohealth.com/forums/index.php?threads/is-cfs-contagious.189664/ | title = Is CFS contagious? |website = ProHealth Forums|access-date=2019-02-13}}</ref> However, [[Rosemary Underhill|Underhill]] and O'Gorman (2006) researched 219 patients with ME/CFS, and concluded that close household contact and genetics were both risk factors for CFS, finding 3.2% of spouses/partners of those with CFS also had the illness.<ref name="UnderhillInfectious">{{Cite journal | last = Underhill | first = Rosemary A. | last2 = O'Gorman | first2 = Ruth | date = 2006-01-01 | title = Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients | url = https://doi.org/10.1300/J092v13n01_02|journal=Journal of Chronic Fatigue Syndrome|volume=13|issue=1|pages=3–13|doi=10.1300/J092v13n01_02|issn=1057-3321}}</ref> This was a higher prevalence than all genetic relatives except children of patients. Because ME/CFS can run in families, a [[Genetics of chronic fatigue syndrome|genetic link]] is a line of research recommended by the CDC.<ref name="causes" /><br />

[[Michael Sikora]] and collaborators at the [[Open Medicine Foundation]] hope that their research on the role of [[T cell]]s and immune-related [[Genetics of chronic fatigue syndrome|genes]] will help address "whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system".<ref name="omf-funded">{{Cite web | url = https://www.omf.ngo/2018/06/04/omf-funded-research/ | title = OMF funded research | date = Jun 4, 2018 | website = [[Open Medicine Foundation]]}}</ref>

====Blood donation and organ transplant====
A [[Blood donation|tissue and blood donation]] ban is in force for ME/CFS in the [[United Kingdom]] (even if recovered),<ref name="BloodUK">{{Cite web | url = https://my.blood.co.uk/KnowledgeBase | title = Knowledgebase|website=My Donor Record - Health, Eligibility & Travel | last = | first = | authorlink = |archive-url=|archive-date=|url-status=|access-date=2021-10-08}}</ref> [[Australia]],<ref name="donate">{{Cite web|url = https://www.donateblood.com.au/faq/chronic-fatigue-syndrome |title=Chronic fatigue syndrome – I have/had chronic fatigue syndrome. Can I donate?|access-date=2022-05-25|website = Australian Red Cross}}</ref> [[New Zealand]],<ref name="NZBlood">{{Cite web |url = https://www.nzblood.co.nz/become-a-donor/am-i-eligible/detailed-eligibility-criteria/ | title = Detailed Eligibility Criteria|access-date=2022-05-25 | date = |website=NZ Blood|quote=}}</ref> most of [[Canada]],<ref name="Wilson2014">{{Cite journal | title = The Use of Preliminary Scientific Evidence in Public Health: A Case Study of XMRV | date = 2014-04-08 | url = https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1001623|journal=PLOS Medicine|volume=11|issue=4| pages = e1001623 | last = Wilson | first = Kumanan | last2 = Atkinson | first2 = Katherine | last3 = Keelan | first3 = Jennifer|language=en|doi=10.1371/journal.pmed.1001623|pmc=PMC3979645|pmid=24714396|issn=1549-1676}}</ref> and for a time also in the [[United States]],<ref name="post">{{Cite web | url = http://voices.washingtonpost.com/checkup/2010/12/red_cross_bars_chronic_fatique.html | title = Red Cross bars chronic fatigue patients from donating blood | last = Stein | first = Rob | authorlink = | date = Dec 3, 2010 | website = Washington Post|archive-url=|archive-date=|access-date=2022-05-25}}</ref> initially due to the research on [[Xenotropic murine leukemia virus-related virus|XMRV]] as being the likely infectious trigger of CFS<ref>{{Cite web | url = https://www.meassociation.org.uk/2010/04/xmrv-testing-in-the-uk/ | title = XMRV testing in the UK | last = | first = | author-link =| date = 2010 | website = [[ME Association]]|language=en-US|archive-url=|archive-date=|access-date=2019-02-13}}</ref> and showing that patients carried the virus.<ref name="post" /> Two papers on XMRV were retracted as the result was caused by laboratory contamination,<ref name="Redaction2012">{{Cite journal | date = Dec 2012 | title = Redaction, retraction and reaction | url = https://www.nature.com/articles/nrmicro2928|journal=Nature Reviews Microbiology|language=en|volume=10|issue=12 | pages = 799|doi=10.1038/nrmicro2928|issn=1740-1534}}</ref><ref name="transfusion">{{Cite web | url = https://transfusionnews.com/2012/10/05/multicenter-study-finds-no-correlation-between-chronic-fatigue-syndrome-and-xmrv/ | title = Multicenter Study Finds No Correlation between Chronic Fatigue Syndrome and XMRV|website=transfusionnews.com|access-date=2019-02-13}}</ref> but many blood donation bans remain.<ref name="Wilson2014"/>

The US American Red Cross no longer has statements barring transfusions or transplants for CFS,<ref name="redcross">{{Cite web | url = https://www.redcrossblood.org/faq.html#eligibility-health|access-date=2019-02-13 | title = Frequently Asked Questions | date = | last = | first = | authorlink = |archive-url=|archive-date=|website=American Red Cross|quote=Your search for "Chronic fatigue syndrome" returned no results.}}</ref> but patients are expected to be in "good health" which would exclude most.<ref name="redcross"/> The American Association of Blood Banks advises to either accept or defer ME/CFS donors based on "clinical judgment of the donor's health status".<ref name="AABBOct2012">{{Cite web | last = American Association of Blood Banks | url = https://www.aabb.org/docs/default-source/default-document-library/regulatory/eid/xmrvfactsheet.pdf?sfvrsn=cd162fa3_2 | date = October 2012 | title = Xenotropic Murine Leukemia Virus-Related Virus (XMRV) and other Polytropic Murine Leukemia Viruses (pMLV)|pages = 3 |quote=An updated AABB Association Bulletin #12-05 (November 2012) states that individual collectors of blood and cellular therapy products should accept or defer donors with a history of CFS based on their clinical judgment of the donor's health status.|access-date=2022-05-25}}</ref> Patient charities discourage ME/CFS patients from donating blood,<ref name="MassBlood2015">{{Cite web | url = https://www.massmecfs.org/research/recent-research/19-xmrv/237-aabbs-recommendation-on-cfidsme-and-blood-donation | title = AABB's recommendation on ME/CFS and blood donation | date = Nov 25, 2015 |website=[[Massachusetts ME/CFS & FM Association]]|access-date=2022-05-25}}</ref>

== Mini-Docs ==
<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Jen Brea/TED (2016)">https://www.youtube.com/watch?v=Fb3yp4uJhq0</embedvideo>
[[What happens when you have a disease doctors can't diagnose - TED Talk (2016)|''What happens when you have a disease doctors can't diagnose'']] By [[Jennifer Brea|Jen Brea]]/TED

Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her illness, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.<ref>{{Cite web | url = https://www.youtube.com/watch?v=Fb3yp4uJhq0 | title = What happens when you have a disease doctors can't diagnose | date = Jan 17, 2017|access-date=|website=YouTube | last = Brea | first=Jennifer | authorlink=Jennifer Brea|archive-url=|archive-date=|publisher=TED}}</ref><ref>{{Cite web | url = https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose | title = What happens when you have a disease doctors can't diagnose | date = Jun 2016|access-date=|website=TED | last = Brea | first=Jennifer | authorlink=Jennifer Brea|archive-url=|archive-date=}}</ref>

<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Veronica Weber/Palo Alto Online (2015)">https://www.youtube.com/watch?v=9_HwOUiImvw</embedvideo>

[[Invisible Illness - Stories of Chronic Fatigue Syndrome|''Invisible Illness - Stories of Chronic Fatigue Syndrome'']] By Veronica Weber/Palo Alto Online

This mini documentary reveals 3 stories of people who have been impacted by [[Chronic Fatigue Syndrome]] - a little known disease that affects roughly 836,000-2.5 million people in the U.S. and receives little research funding. They share emotions of treating loved ones with the disease, their frustrations of being ignored by members of society and the healthcare industry and express hopes of treatment and research. Video by Veronica Weber/Palo Alto Online<ref>{{Cite web | url = https://www.youtube.com/watch?v=9_HwOUiImvw | title = Invisible Illness - Stories of Chronic Fatigue Syndrome | date = Jul 10, 2015 |access-date=|website=YouTube | last = Weber | first = Veronica | authorlink=|archive-url=|archive-date=|publisher=Palo Alto Online}}</ref>

<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Dr. David Kaufman/Unrest (2018)">https://www.youtube.com/watch?v=RC9TjgE_PlU</embedvideo>

''Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome'' By Dr. [[David Kaufman]]/[[Unrest|''Unrest'']]

This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is '''part of the Unrest Continuing Education module''', made available through the American Medical Women’s Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch [[Unrest]] online for free and receive Continuing Education credit.<ref>{{Cite web | url = https://www.youtube.com/watch?v=RC9TjgE_PlU | title = Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | date = Oct 16, 2018|access-date=|website=YouTube | last = | first = | authorlink = David Kaufman|archive-url=|archive-date=|publisher=Unrest Film}}</ref>

==Epidemiology ==
In the [[United States]], 836,000 - 2.5 million people suffer from ME/CFS. "The total economic costs of ME/CFS are estimated at $17 to $24 billion annually."<ref name="clinicians" /> Some CFS patients can work with [https://www.dol.gov/general/topic/disability/jobaccommodations job accommodations] but 1/3 to 1/2 become unemployed and [[Disability|many rely on SSDI/SSI]].<ref>[https://www.masscfids.org/job-accommodations Job Accommodations - MASS CFIDS]</ref>
*[[Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome|Epidemiology]]
:All races and cultures are afflicted with ME/CFS.<ref>[http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91 Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care - July 2011]</ref><ref name="epidemiology">{{Cite web | title = Epidemiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/epidemiology.html|website=[[Centers for Disease Control and Prevention]] | date = 2018-11-08|access-date=2019-01-29|language=en-us}}</ref> Children and adolescents are also diagnosed.<ref>{{Cite web | title = ME/CFS in Children {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/me-cfs-children/index.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-01-29|language=en-us}}</ref><ref>{{Cite web | title = Pediatric ME/CFS Home Page | url = https://www.massmecfs.org/pediatric-me-cfs-home-page|website=massmecfs.org|access-date=2019-01-29}}</ref>
*[[Female predominant diseases]]
:Like many [[Autoimmune disease|autoimmune]] and [[Neuro-immune disease|neuro-immune]] diseases where mostly women are afflicted,<ref>[http://www.rightdiagnosis.com/artic/fact_sheet_autoimmune_disease_in_women_nwhic.htm Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015]</ref> the ME/CFS female/male patient ratio per Capelli et al. is 6:1<ref>{{Cite journal | title = Chronic fatigue syndrome/myalgic encephalomyelitis: an update | url = https://www.ncbi.nlm.nih.gov/pubmed/21244747|journal=International Journal of Immunopathology and Pharmacology | date = Oct 2010|issn=0394-6320|pmid=21244747 | pages = 981–989|volume=23|issue=4|doi=10.1177/039463201002300402 | first = E. | last=Capelli | first2 = R. | last2 = Zola | first3 = L. | last3 = Lorusso | first4 = L. | last4 = Venturini | first5 = F. | last5 = Sardi | first6 = G. | last6 = Ricevuti}}</ref> while the CDC states 4:1.<ref name="epidemiology"/>
*[[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|Pediatric]]
:Pediatric ME/CFS is defined by the CDC<ref>{{Cite web | url = https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-healthcare-professional.html | title = Pediatric ME/CFS: Fact Sheet for Healthcare Professionals {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2017-10-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-13}}</ref> and the [[National Academy of Medicine]] (NAM)<ref name="IOM2015"/>{{Rp|181}} although it is usually diagnosed in adults.<ref name="whatis"/> "Children below the age of 8 or 9 do not have the symptom pattern of adolescents past puberty. If the onset of the disease occurs during adolescence, the most common time of onset, the pattern is similar to that of adults."<ref>{{Cite web | url = https://www.omf.ngo/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ | title = ME/CFS in Children - by David S. Bell, MD | date = 2016-06-25|publisher=[[Open Medicine Foundation]]|access-date=2018-08-11|language=en-US | last = Bell | first = David | authorlink = David Bell}}</ref> The prognosis in adolescents is considered to be better than in adults.<ref name="prognosis">{{Cite web | url = https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/prognosis.html | title = Prognosis {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | date = 2018-11-08 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-31}}</ref><ref>{{Cite journal | last = Rowe | first = Peter C. | last2 = Underhill | first2 = Rosemary A. | last3 = Friedman | first3 = Kenneth J. | last4 = Gurwitt | first4 = Alan | last5 = Medow | first5 = Marvin S. | last6 = Schwartz | first6 = Malcolm S. | last7 = Speight | first7 = Nigel | last8 = Stewart | first8 = Julian M. | last9 = Vallings | first9 = Rosamund | date = 2017 | title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer |url = https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5|doi=10.3389/fped.2017.00121|issn=2296-2360}}</ref> Children are diagnosed with ME/CFS at three months of illness under SEID and CCC and ME is diagnosed immediately under ICC.<ref>{{Cite web | url = https://www.masscfids.org/pediatric-me-cfs-links | title = Pediatric ME/CFS links|website=[[Massachusetts ME/CFS & FM Association]]|language=en-GB|access-date=2018-08-11}}</ref><ref name="clinicians" /><ref name="Carruthers, 2003" /><ref name="ICC" />
*[[Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome|Prevalence]]
:"Worldwide, there may be as many as 17 – 24 million people with ME/CFS."<ref>{{Cite web | url = https://ammes.org/how-many-people-have-mecfs/ | title = How Many People Have ME/CFS?|website = [[American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society]]|language=en-US|access-date=2019-01-31}}</ref> 25% of ME/CFS patients are [[Severe and very severe ME|housebound or bedbound]] at some point in their illness.<ref name="keyfacts">{{Cite web | url = https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf | title = Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts | last = | first = | author-link =| date = 2015 | website = nap.edu|archive-url=https://web.archive.org/web/20190327085836/https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf|archive-date=2019-03-27|url-status=dead|access-date=}}</ref><ref name="IOM2015"/>{{Rp|32}} 90% of patients are undiagnosed.<ref name="whatis"/>
*[[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|Prognosis]]
:The prognosis for a patient diagnosed with ME/CFS is considered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning.<ref name="Cairns2005">{{Cite journal | last = Cairns | first = R. | author-link = | last2 = Hotopf | first2 = M. | authorlink2 = Matthew Hotopf | date = Jan 2005 | title = A systematic review describing the prognosis of chronic fatigue syndrome | url = https://www.ncbi.nlm.nih.gov/pubmed/15699087|journal=Occupational Medicine (Oxford, England)|volume=55|issue=1|pages=20–31|doi=10.1093/occmed/kqi013|issn=0962-7480|pmid=15699087|quote=|via=}}</ref> The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients.<ref name="Cairns2005" /><ref name="Joyce1997">{{Cite journal | last= Joyce | first = J. | last2 = Hotopf | first2 = M. | last3 = Wessely | first3 = S. | date = Mar 1997 | title = The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review | url = https://www.ncbi.nlm.nih.gov/pubmed/9093600|journal=QJM: monthly journal of the Association of Physicians|volume=90|issue=3|pages=223–233|issn=1460-2725|pmid=9093600}}</ref>

==ME vs CFS vs CF==

The name myalgic encephalomyelitis (ME) was coined following an [[Epidemic myalgic encephalomyelitis|outbreak]] of an illness at the [[1955 Royal Free Hospital outbreak|Royal Free Hospital]] in the UK, in 1955. The name chronic fatigue syndrome (CFS) was coined by the [[Centers for Disease Control and Prevention]] (CDC) following an [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|outbreak]] of a [[flu-like illness]] at [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]], at Lake Tahoe, in the 1980s. There is disagreement as to whether ME and CFS are the same disease, entirely separate illnesses, or whether ME constitutes a more severe subset of CFS. Adding to the confusion, the diagnostic name given to patients is more often dependent on the country in which they live, than differing characteristics of their illness, as some countries use CFS (eg: US, [[Australia]]), and other countries (particularly in Europe) use ME. At this point in time, there is no clear biological evidence to resolve whether the illnesses are the same or different, and there is unlikely to be a resolution until firm [[diagnostic biomarker|biomarkers]] have been identified. As such, many patients and researchers use the term ME/CFS.<ref name="Klimas20140621video" /> See: [[Definitions of ME and CFS]].

The name Chronic Fatigue Syndrome is itself controversial, as many consider it [[stigma and discrimination|stigmatizing]]. In February 2016, Dr [[Anthony Komaroff]], who was part of the CDC group of clinicians who coined the name Chronic Fatigue Syndrome, said of it:
<blockquote>"I think that was a big mistake because the name, in my opinion, and the opinion of a lot of people, it both trivializes and stigmatizes the illness. It makes it seem unimportant, maybe not even real"<ref name="Komaroff20160217video" /></blockquote>

It is important to distinguish between ME/CFS and chronic fatigue (CF), which is a symptom of many different medical conditions (e.g.: anemia, [[hepatitis]], [[multiple sclerosis]], [[Thyroid disease|hypothyroidism]], [[depression]], ME/CFS). "Chronic fatigue" is not an illness in its own right and it is incorrect and misleading to refer to ME/CFS as "chronic fatigue". While [[fatigue]] is a component of ME/CFS, many consider [[post-exertional malaise]] (PEM) to be the cardinal feature of ME/CFS.<ref name="Carruthers, 2003" /><ref name="IOM2015MECFS" />

==Evidence of a disease==

=== Symptoms ===
[[List of symptoms in ME CFS|Symptom presentation varies enormously]] between individuals. Symptom presentation also varies within individuals, as individuals often report that symptoms change over time (increasing or decreasing) and new symptoms may appear while others disappear.<ref>{{Cite web | title = Symptoms and Diagnosis of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/symptoms-diagnosis/index.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-02-01|language=en-us}}</ref> There are many symptoms which people with ME/CFS experience, though those listed below are the core symptoms found in all patients.

[[File:Cfs woman sketch.jpg|435x435px|thumb|[[Post-exertional malaise]] (PEM) is a [[List of symptoms in ME CFS|''worsening'' of ME/CFS symptoms]] after minimal [[Exertion#Exertion in ME.2FCFS|physical, mental or emotional exertion]]. Worsening symptoms may include [[chronic fatigue]]; [[flu-like symptoms]], [[brain fog]]/[[cognitive dysfunction]], and [[word-finding problems]], [[unrefreshing sleep]], [[headache]]s and [[migraine]]s, [[chronic pain]], [[Myalgia|muscle pain]] and [[muscle fatigability]], [[orthostatic intolerance]], [[neurally mediated hypotension]], or [[Postural orthostatic tachycardia syndrome|POTS]] and more. The [[Delayed onset of post-exertional symptoms|onset of PEM can be delayed 24-72 hours]] and depending on ME/CFS severity can last days, weeks, or even months]]

[[File:Rosa SEID.JPG|400px|thumb|left|Rosa age 25 in 1986 and mildly ill with [[Systemic Exertion Intolerance Disease#Diagnostic criteria|ME/CFS's core symptoms]]. In 2015 the [[SEID]] criteria were released. Rosa read about [[Post-exertional malaise|PEM]] and how it is delayed and makes [[List of symptoms in ME CFS|ME/CFS symptoms]] like [[Chronic fatigue|CF]], [[Orthostatic intolerance|OI]], and [[Cognitive dysfunction|cognition]] worse. Her life since [[Pediatric myalgic encephalomyelitis/chronic fatigue syndrome|age 17]] fell into place as she never connected her worsening symptoms with increased [[Exertion#Exertion in ME.2FCFS|physical or mental activity]] 24-72 hours prior. She believes not understanding PEM made her illness worsen over the years and is now disabled meeting the [[Canadian Consensus Criteria|CCC]] with PEM.]]

[[File:Brian vastag.png|thumb|left|[[Brian Vastag]] is an American and award-winning journalist and an ME/CFS patient that won a disability case against Prudential, proving that PEM is a severe symptom that keeps him from gainful employment]]

[[File:PEM1.JPG|300px|thumb|right|I think [https://twitter.com/hashtag/twofacesofme?f=tweets&vertical=default&src=hash #TwoFacesofME] is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #[[ME/CFS|MEcfs]] research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.<ref>{{Cite web | url = https://twitter.com/JackCroxall/status/1085900441328803840 | title = I think #TwoFacesofME is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #MEcfs research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.pic.twitter.com/hNjK5140kv | last = Croxall | first = Jack | date = 2019-01-17 | website = @JackCroxall|language=en|access-date=2019-01-17}}</ref>]]

[[File:PEM4.JPG|300px|thumb|right|First photo, me in my [[Severe and very severe ME|wheelchair on a rare trip out]]. Second photo, the inevitable crash. Eye half closed, [[Speech difficulties|slurred speech]], [[Dizziness|dizzy]], weak, etc. #TwoFacesofME<ref>{{Cite web | url = https://twitter.com/hopeforMEyet/status/1085909800766980096 | title = First photo, me in my wheelchair on a rare trip out. Second photo, the inevitable crash. Eye half closed, slurred speech, dizzy, weak, etc. #TwoFacesofMEpic.twitter.com/P2OPnnpQvF | last = Karen | date = 2019-01-17 | website = @hopeforMEyet|language=en|access-date=2019-01-17}}</ref>]]

[[File:PEM5.JPG|300px|thumb|right|#TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not [[Severe and very severe ME|severely ill]], and my life is ok, even [so] I wish that one day science will help me & all the #MeCfs sufferers around the globe.<ref>{{Cite web | title = #TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not severely ill, and my life is ok, even do I wish that one day science will help me & all the #MeCfs sufferers around the globe.pic.twitter.com/wmhfHcfP0p | url = https://twitter.com/Authorportrait/status/1085815918846832640 | website = @Authorportrait | date = 2019-01-17|access-date=2019-01-17|language=en | first = Henry | last = Köhler}}</ref>]]

*[[Post-exertional malaise]] (PEM) is the hallmark symptom of ME/CFS. After physical, mental or emotional [[exertion]] (which for some patients can be a shower or making out a to-do list, others grocery shopping, socializing or reading a news article, while some just walking to the mailbox, getting to the doctor or mentally following a T.V. program)<ref name="what-is" /><ref name="symptoms"/><ref name="Cairns2005" /> there is a payback of significant '''worsening''' [[List of symptoms in ME CFS|ME/CFS symptoms]] which can be [[Delayed onset of post-exertional symptoms|delayed for 24-72 hours or more]]<ref name="symptoms"/><ref name="Lindheimer2017">{{Cite journal | last = Lindheimer | first=Jacob B. | last2 = Meyer | first2 = Jacob D. | last3 = Stegner | first3 = Aaron J. | last4 = Dougherty | first4 = Ryan J. | last5 = Van Riper | first5 = Stephanie M. | last6 = Shields | first6 = Morgan | last7 = Reisner | first7 = Amanda | last8 = Shukla | first8 = Sanjay K. | last9 = Light | first9 = Alan R. | date = 2017-04-03 | title = Symptom variability following acute exercise in myalgic encephalomyelitis/chronic fatigue syndrome: a perspective on measuring post-exertion malaise | url = https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1321166|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=5|issue=2 | pages = 69–88|doi=10.1080/21641846.2017.1321166|issn=2164-1846}}</ref><ref name="Yoshiuchi2007">{{Cite journal | last = Yoshiuchi | first = Kazuhiro | last2 = Cook | first2 = Dane B. | last3 = Ohashi | first3 = Kyoko | last4 = Kumano | first4 = Hiroaki | last5 = Kuboki | first5 = Tomifusa | last6 = Yamamoto | first6 = Yoshiharu | last7 = Natelson | first7 = Benjamin H. | date = 2007-12-05 | title = A real-time assessment of the effect of exercise in chronic fatigue syndrome | url = https://www.ncbi.nlm.nih.gov/pubmed/17655887|journal=Physiology & Behavior|volume=92|issue=5 | pages = 963–968|doi=10.1016/j.physbeh.2007.07.001|issn=0031-9384|pmc=2170105|pmid=17655887}}</ref> and can last 24 hours and even days, weeks, or months.<ref name="VanNess2010">{{Cite journal | last = VanNess | first=J. Mark | last2 = Stevens | first2 = Staci R. | last3 = Bateman | first3 = Lucinda | last4 = Stiles | first4 = Travis L. | last5 = Snell | first5 = Christopher R. | date = Feb 2010 | title = Postexertional malaise in women with chronic fatigue syndrome | url = https://www.ncbi.nlm.nih.gov/pubmed/20095909|journal=Journal of Women's Health (2002)|volume=19|issue=2|pages=239–244|doi=10.1089/jwh.2009.1507|issn=1931-843X|pmid=20095909}}</ref><ref>[https://www.fda.gov/downloads/forindustry/userfees/prescriptiondruguserfee/ucm368806.pdf The Voice of the Patient.] A series of reports from the U.S. Food and Drug Administration’s (FDA’s) Patient-Focused Drug Development Initiative. September 2013</ref> The patient will experience even greater fatigue as well as exasperate the [[flu-like symptoms]] and body [[pain]]. Every patient experiences different symptoms and symptom severity from different activities and exertion output according to how sick he or she is with the disease.<ref name="prognosis" /><ref name="what-is" /><ref name="Cairns2005" /> Regarding PEM the [[CFIDS Association of America]] states:
<blockquote>This is a term which describes a symptom in which exercise or exertion can bring on [[malaise]] (illness). In the case of people with ME/CFS, malaise often occurs during a period some 24-72 hours after exertion. For example, in some cases, a short walk can worsen ME/CFS symptoms two days later. This lack of understanding about the delayed onset of symptoms has, in the past, made it harder to test for ME/CFS. Follow up tests, taken less than 24 hours after an initial exercise test, may show that the patient can still perform activities at the same level (before post exertional malaise has a chance to take hold).<ref>[http://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America]</ref></blockquote>
*[[chronic fatigue]]
*[[cognitive dysfunction]]

*[[orthostatic intolerance]] (OI) such as [[postural orthostatic tachycardia syndrome]] (POTS) or [[neurally mediated hypotension]] (NMH)
*[[unrefreshing sleep]]/[[sleep dysfunction|sleep disturbance]] <ref name="DiagnosticAlgorithm" /><ref name="clinicians" />
==== Other possible symptoms ====
*[[chronic pain]]
*[[immune system]]
*<span class="plainlinks">[[:Category:Neurological signs and symptoms|neurological signs and symptoms]]</span> See also: [[neuroinflammation]].
*[[List of symptoms in ME CFS|List of symptoms in ME/CFS]]

=== Comorbids ===
*[[fibromyalgia]] (FMS)
*[[irritable bowel syndrome]] (IBS)
*[[multiple chemical sensitivity]] (MCS)
*[[temporomandibular joint disorder]] (TMJ) <ref>[http://solvecfs.org/what-is-mecfs/ What is ME/CFS? - Solve ME/CFS Initiative]</ref>

=== Government guides on symptoms ===
'''US Government guides on symptoms'''
*[https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf Clinicians Guide] via The [[Institute of Medicine report]] (IOM)
*[https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html CDC - ME/CFS Symptoms]

'''Canada guides on symptoms'''
*[http://linkis.com/org/tUheh Alberta Clinicians Guide]

===Biological abnormalities===
Because there is currently no biomedical test for ME/CFS, many have incorrectly assumed that there are no medical abnormalities found in people with the illness. As a result, ME/CFS symptoms are often considered to be [[Medically unexplained physical symptoms|medically unexplained]], and therefore [[Psychologization|psychological]] in origin. While it is true that the illness is poorly understood, many biological abnormalities have been found in a range of different body systems, particularly in the [[central nervous system]], [[autonomic nervous system]], [[immune system]], and [[Metabolic|energy metabolism]].<ref name="IOM2015MECFS" /> Unfortunately, none have yet proved to be specific enough to ME/CFS as to be useful as a [[Diagnostic biomarker|biomarker]] of the disease, and many were identified in small studies, which need replication. Whilst there have been [[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|many abnormalities identified]] found to be associated with the disease, it cannot yet be determined whether these are a cause or consequence.
* [[Gastrointestinal system]]
* [[Natural killer cell]]

==== Notable studies ====
* [[Cytokine#Notable_studies|Cytokine ("Notable studies")]]
*Immune findings by [[Mady Hornig]] & [[Ian Lipkin]]<ref name="Hornig20150201immune" />
*[[List of enterovirus infection studies]]

*2014, [[Neuroinflammation]] Japanese Neuroinflammation study<ref name="NakatomiY2014" />
*2015, Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology<ref name="stanfordleptin">{{Cite journal | last1 = Stringer | first1 = EA | last2 = Baker | first2 = KS | last3 = Carrol | first3 = IR | last4 = Montoya | first4 = JG | authorlink4 = Jose Montoya | last5 = Chu | first5 = L | authorlink5 = Lily Chu | last6 = Maeker | first6 = HT | last7 = Younger | first7 = JW | authorlink7 = Jarred Younger| title = Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology | journal = J Transl Med.| date = Apr 9, 2013 | pmid = 23570606 | pmc = 3637529 | doi = 10.1186/1479-5876-11-93| url = http://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-11-93 }}</ref> - [https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-11-93 (Full text)]
::Younger's Leptin study
*2014, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome<ref name="Zeineh2014">{{Cite journal | last = Zeineh | first = Michael M. | author-link = Michael Zeineh | last2 = Kang | first2 = James | last3 = Atlas | first3 = Scott W. | last4 = Raman | first4 = Mira M. | last5 = Reiss | first5 = Allan L. | last6 = Norris | first6 = Jane L. | last7 = Valencia | first7 = Ian | last8 = Montoya | first8 = Jose G. | date = 2014-10-29 | title = Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome | url = https://pubs.rsna.org/doi/10.1148/radiol.14141079|journal=Radiology|volume=274|issue=2 | pages = 517–526|doi=10.1148/radiol.14141079|issn=0033-8419}}</ref>
<blockquote>Bilateral [[white matter]] atrophy is present in CFS. No differences in perfusion were noted. Right hemispheric increased FA may reflect degeneration of crossing fibers or strengthening of short-range fibers. Right anterior arcuate FA may serve as a [[Diagnostic biomarker|biomarker]] for CFS.</blockquote>
:*2014, [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)|Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder By David Tuller - New York Times: Well]]
[[File:ME-CFS Brain Images.jpg|500px|thumb|center|Top scans: Healthy control patient; Bottom scans: chronic fatigue syndrome (CFS) patient. Image By: [[Michael Zeineh]]]]
*2016, [[Metabolic features of chronic fatigue syndrome]]

*2019, [[Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy (2019) Mueller, et al|Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy]]<ref name="Mueller2019">{{Cite journal | url = https://link.springer.com/epdf/10.1007/s11682-018-0029-4 | title = Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy | last = Mueller | first = Christina | authorlink= | last2 = Lin | first2 = Joanne | authorlink2 = | date = 2019 | journal=Brain Imaging and Behavior|volume=14|issue= | pages = 562–572|doi=10.1007/s11682-018-0029-4|archive-url=|archive-date=|access-date=2019-01-17 | last3 = Sheriff | first3 =Sulaiman | authorlink3 = | last4 = Maudsley | first4 = Andrew | authorlink4 = | last5 = Younger | first5 = Jarred | authorlink5 = Jarred Younger}}</ref>
**2018, [https://www.youtube.com/watch?v=rxdzaWD5wfU ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study]<ref>{{Cite web | url = https://www.youtube.com/watch?v=rxdzaWD5wfU | title = ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study | date = Dec 14, 2018|access-date=|website=YouTube | last = Younger | first=Jarred | authorlink=Jarred Younger|archive-url=|archive-date=|publisher=SolveCFS}}</ref> (TALK)

===Causes & triggers===

*Outbreaks - see [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|List of outbreaks]]
*Possible infectious triggers: [[Enterovirus]]es, [[Epstein-Barr virus]]<ref name="Hickie2006" />, [[Q fever]]<ref name="Hickie2006" />, [[Ross River virus]]<ref name="Hickie2006" />, [[mononucleosis]]<ref name="Jason, Katz, 2017" />, ([[Ebola virus disease|Ebola]]?)<ref name="Hickie2006" />
*Non-viral triggers - [[trauma]], chemical

== Tests ==
* [[Natural killer cell]] (NKC) Blood Test
* Sleep study for [[sleep apnea]], [[Restless legs syndrome|restless leg syndrome]], and other sleep disturbances.
* [[Tilt table test]] for [[Orthostatic intolerance|OI]] or [[Postural orthostatic tachycardia syndrome|POTS]].

==Treatments==
There are currently no [[U.S. Food and Drug Administration|Food and Drug Administration]] (FDA) approved treatments for ME/CFS. Treatments consist mostly of symptom management, rather than treatment of the underlying cause of the disease, which is not yet understood.<ref name="Primer2014" /> There are many [[:Category:Potential_treatments|potential treatments]], though their evidence-base is limited, as most research into treatments has gone into psychological approaches to treatment.

=== Drugs ===
[[File:Ampligen.jpg|200px|thumb|right|Ampligen]]
Two treatments that have garnered much attention are [[Ampligen]], produced by [[AIM ImmunoTech]] (formerly Hemispherx Biopharma), and [[Rituximab]]. Many people have reported improvements from Ampligen, and a few recovered but relapsed when they stopped taking it.<ref name="TownCFS">{{Cite web | url = https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue | title = A Town for People with Chronic Fatigue Syndrome|website=New Yorker | date = Sep 3, 2019 | first = Mike | last = Mariani|access-date=2022-04-13}}</ref>

Attempts to obtain FDA approval for Ampligen in the US have failed, but it is available to some people on [[compassionate use]].<ref name="experimental">{{Cite web | url = https://ammes.org/experimental-treatments/ | title = Experimental treatments | last = | first = | date = |website=[[American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society]]|language=en-US|archive-url=|archive-date=|access-date=2021-03-18}}</ref> [[Argentina]] approved the use of Ampligen for [[Severe and very severe ME|severe ME/CFS]] in 2016.<ref>{{Cite news | url = http://www.globenewswire.com/news-release/2016/08/23/866212/0/en/Hemispherx-Biopharma-Announces-Major-Breakthrough-Approval-for-Commercial-Sale-of-Rintatolimod-U-S-Tradename-Ampligen-to-Treat-Severe-Cases-of-Myalgic-Encephalomyelitis-Chronic-Fat.html | title = Hemispherx Biopharma Announces Major Breakthrough: Approval for Commercial Sale of Rintatolimod (U.S. Tradename: Ampligen®) to Treat Severe Cases of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the Argentine Republic | last = Hemispherx Biopharma, Inc. | date = Aug 23, 2016|work=GlobeNewswire News Room|access-date=2018-08-13|archive-url=|archive-date=|language=en-US}}</ref><ref>{{Cite news | url = http://cdn2.hubspot.net/hubfs/150154/docs/Hemispherx-Executive-Informational-Overview-11-27-16.pdf | title = Hemispherx Biopharma, Inc. Executive Informational Overview | last = | first = | date = Nov 27, 2016|work=Crystal Research Associates|access-date=|archive-url=|archive-date=|format=PDF}}</ref> Also in 2016, it was made available on a limited basis in Europe.<ref>{{Cite web | url = https://www.bizjournals.com/philadelphia/news/2016/07/25/hemispherx-ships-ampligen-for-european-chronic.html | title = Hemispherx ships Ampligen for European chronic fatigue syndrome program | last = George | first = John | date = Jul 25, 2016 | website = bizjournals.com|archive-url=|archive-date=|access-date=2018-08-13}}</ref> In July 2018, AIM ImmunoTech announced the expansion of its US [[compassionate use]] program, '''AMP-511''', to new ME/CFS patients for the first time in over a year.<ref>[http://www.4-traders.com/HEMISPHERX-BIOPHARMA-INC-31148494/news/Hemispherx-BioPharma-Opens-FDA-Approved-Reimbursement-Based-Expanded-Access-Treatment-Program-for-26862569/ Hemispherx BioPharma : Opens FDA-Approved Reimbursement Based Expanded Access Treatment Program for ME/CFS to New Enrollees - 4 Traders]</ref><ref>{{Cite web | url = https://finance.yahoo.com/news/hemispherx-biopharma-inc-announces-advancement-133000883.html | title = Hemispherx Biopharma Inc. Announces Advancement in Expanded Access Program for Ampligen in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | last = | first = | author-link =| date = Jan 2, 2019|website=finance.yahoo.com|publisher=GlobeNewswire|language=en-US|archive-url=|archive-date=|access-date=2019-02-10}}</ref>

[[Rituximab]], a lymphoma drug, had shown promising results in initial trials in Norway,<ref>{{Cite journal | last = Fluge | first = Øystein | authorlink = Øystein Fluge | last2 = Risa | first2 = Kristin | authorlink2 = | last3 = Lunde | first3 = Sigrid | author-link3 = | last4 = Alme | first4 = Kine | authorlink4 = | last5 = Rekeland | first5 = Ingrid Gurvin | authorlink5 = | last6 = Sapkota | first6 = Dipak | authorlink6 = | last7 = Kristoffersen | first7 = Einar Kleboe | last8 = Sørland | first8 = Kari | last9 = Bruland | first9 = Ove | date = 2015-07-01 | editor-last = van der Feltz-Cornelis|editor-first = Christina | title = B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment | url = http://dx.plos.org/10.1371/journal.pone.0129898|journal=PLOS ONE|language=en|volume=10|issue=7| pages = e0129898|doi=10.1371/journal.pone.0129898|issn=1932-6203|pmc=4488509|pmid=26132314|access-date=|quote=|via=}}</ref> and there were groups crowdsourcing funding for further trials in other countries. In 2017, Drs. [[Øystein Fluge]] and [[Olav Mella]] announced that their Rituximab trial had failed. They stated that they would focus their efforts on attempting to identify a subgroup of ME/CFS patients with an immune profile that would be responsive to Rituximab.<ref>{{Cite web | url = https://www.simmaronresearch.com/blog/2017/11/norwegian-rituximab-chronic-fatigue-syndrome-mecfs-trial-fails | title = Norwegian Rituximab Chronic Fatigue Syndrome (ME/CFS) Trial Fails|website=Simmaron Research|language=en-US|access-date=2021-11-21}}</ref> A phase III trial published in 2019 showed Rituximab does not improve ME/CFS.<ref name="phase3-2019">{{Cite journal | last = Fluge | first = Øystein | last2 = Rekeland | first2 = Ingrid G. | last3 = Lien | first3 = Katarina | last4 = Thürmer | first4 = Hanne | last5 = Borchgrevink | first5 = Petter C. | last6 = Schäfer | first6 = Christoph | last7 = Sørland | first7 = Kari | last8 = Aßmus | first8 = Jörg | last9 = Ktoridou-Valen | first9 = Irini | date = 2019-04-02 | title = B-Lymphocyte Depletion in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Randomized, Double-Blind, Placebo-Controlled Trial | url = https://www.ncbi.nlm.nih.gov/pubmed/30934066|journal=Annals of Internal Medicine|doi=10.7326/M18-1451|issn=1539-3704|pmid=30934066}}</ref><br>

[[Jarred Younger]] announced in March 2016 that he will be undertaking a trial of [[low dose naltrexone]] (LDN) in ME/CFS.<ref name="younger-research">{{Cite web | last = Younger | first=Jarred | authorlink = Jarred Younger | title = Research. Neuroinflammation Pain and Fatigue Laboratory|access-date= Nov 21, 2021 | url = https://sites.uab.edu/younger/research/}}</ref>

=== Treating other conditions ===
Different forms of [[Orthostatic intolerance|OI]] are treated with beta-blockers (Metopropol), [[Fludrocortisone]] (Florinef), and [[Mestinon|Pyridostigmine]].<ref name="Carruthers, 2003" /> When treating other diseases, illnesses, and conditions, and ME/CFS comorbidities or overlapping conditions such as sleep difficulties, cognitive problems, pain, and other symptoms it is important to remember that patients are [[Medicine sensitivities|sensitive to medications]].<ref name="monitor">{{Cite web | title = Monitoring the Use of All Medicines and Supplements {{!}} Clinical Care of Patients {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/monitoring-medication.html|website=[[Centers for Disease Control and Prevention]] | date = 2018-11-08|access-date=2019-01-27|language=en-us}}</ref> The CDC advice to health care practitioners is to be aware that because all drugs can cause side effects, ME/CFS patient symptoms can worsen. "This is particularly true of any medication that acts on the [[central nervous system]], such as sedating medications: therapeutic benefits can often be achieved at lower-than-standard doses. Patients with ME/CFS might tolerate or need only a fraction of the usual recommended doses for medications. After initial management with lower dosing, one or more gradual increases may be considered as necessary and as tolerated by the patient."<ref name="prognosis" /> For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen OI.<ref name="prognosis" />
===Exercise as treatment===
[[File:J Brea TED.JPG|200px|thumb|right|[[Jen Brea|Jennifer Brea]] is an [[United States|American]] who was studying at Harvard; while on a trip to [[Kenya]] she became very ill with what would eventually be diagnosed as [[ME/CFS]]. Brea began experiencing [[Nervous system|neurological]] problems. Her neurologist diagnosed her with "conversion disorder" ([[hysteria]]). When walking home from his office, she collapsed. [[Severe and very severe ME|Jen then needed to use a wheelchair]] keeping her legs up due to [[Postural orthostatic tachycardia syndrome|POTS]] as her blood pooled into her legs]].
Previously, two common treatment recommendations for ME/CFS were [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT). These treatments are based on disproven the hypothesis that the disease might have begun with a viral infection but has been perpetuated by [[deconditioning]] from lack of activity, and [[illness beliefs|fear and avoidance]] of activity. GET and CBT are aimed at addressing these hypothesized causes by challenging the proposed unhelpful thoughts that result in avoidance of activity and reconditioning through a gradual increase in exercise. These treatments are controversial and are at odds with much of the research literature, which suggests that exercise is harmful to people with ME/CFS. A large patient survey of treatment responses found that 74% of people who had tried GET, reported that their symptoms subsequently worsened,<ref name="MEASSUK20150529survey" /> which is consistent with other patient surveys and many research findings.<ref name="Phoenix20160222Norway2012" /><ref name="OxfordBrookesSurvey">{{Cite web|url = https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf| title = Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT | last = Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS)|location=Oxford Brookes University | date = Feb 27, 2019}}</ref>

The [[PACE trial]], published in 2011, is the largest GET trial ever conducted. It has received much publicity as a result of its recovery rate claims, though it has come under strong criticism from within both the scientific and patient community for significant flaws in its design, and for overstating (and in some cases misrepresenting) outcomes in both the initial trial, and follow-up studies.<ref>{{Cite journal | last = Coyne | first = James Charles | last2 = Laws | first2 = Keith R | date = 2016 | title=Results of the PACE follow-up study are uninterpretable | url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext|journal=The Lancet Psychiatry|language=English|volume=3|issue=2| pages = e6–e7|doi=10.1016/S2215-0366(15)00551-9|issn=2215-0366|via=}}</ref> From 2015 to present day, the study was the subject of a series of investigative pieces that were highly critical of the trial by journalist Dr. [[David Tuller]]<ref name="viroblogMECFS" />, science writer [[Julie Rehmeyer]], patient advocate [[Tom Kindlon]], Dr. [[Keith Geraghty]]<ref name="Geraghty, 2017">{{Cite journal | last1 = Geraghty | first1 = Keith | authorlink1 = Keith Geraghty| title = Further Commentary on the PACE Trial: Biased Methods and Unreliable Outcomes| journal = Journal of Health Psychology | volume = | issue = | page = | date = May 2017 | doi = 10.1177/1359105317714486}}</ref>, psychologist [[Carolyn Wilshire]]<ref name="Wilshire C, et al, 2017">{{Cite journal | last1 = Wilshire | first1 = C | authorlink1 = Carolyn Wilshire | last2 = Kindlon | first2 = T | authorlink2 = Tom Kindlon | last3 = McGrath | first3 = S | authorlink3 = Simon McGrath | title = PACE trial claims of recovery are not justified by the data: a rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White | journal = Fatigue: Biomedicine, Health & Behavior | volume = 5 | issue = 1 | page = 62-67 | date = 2017 | doi = 10.1080/21641846.2017.1259724}}</ref> and others. A petition signed by almost 12,000 ME/CFS patients and allies,<ref name="MEACTIONpacepetition" /> and an open letter signed by 42 ME/CFS experts from around the world,<ref name="openletrLANCET2">{{Cite web | last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis | last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards | last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason | last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin | last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello | last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold | last7 = Ablashi | first7 = Dharam V | authorlink7 = Dharam Ablashi | last8 = Baraniuk | first8 = James N | authorlink8 = James Baraniuk | last9 = Barcellos | first9 = Lisa F | authorlink9 = Lisa Barcellos | last10 = Bateman | first10 = Lucinda | authorlink10 = Lucinda Bateman | last11 = Bell | first11 = David S | authorlink11 = David Bell | last12 = Bested | first12 = Alison C | authorlink12= Alison Bested | last13 = Broderick | first13 = Gordon | authorlink13 = Gordon Broderick | last14 = Chia | first14 = John | authorlink14 = John Chia | last15 = Chu | first15 = Lily | authorlink15 = Lily Chu | last16 = Enlander | first16 = Derek | authorlink16 = Derek Enlander | last17 = Fletcher | first17 = Mary Ann | authorlink17 = Mary Ann Fletcher | last18 = Friedman | first18 = Kenneth | authorlink18 = Kenneth Friedman | last19 = Kaufman | first19 = David L | authorlink19 = David Kaufman | last20 = Klimas | first20 = Nancy | authorlink20 = Nancy Klimas | last21 = Lapp | first21 = Charles W | authorlink21 = Charles Lapp | last22 = Levine | first22 = Susan | authorlink22 = Susan Levine | last23 = Light | first23 = Alan R | authorlink23 = Alan Light | last24 = Marshall-Gradisnik | first24 = Sonya | authorlink24 = Sonya Marshall-Gradisnik | last25 = Medveczky | first25 = Peter G | authorlink25= Peter Medveczky | last26 = Nahle | first26 = Zaher | authorlink26 = Zaher Nahle | last27 = Oleske | first27 = James M | authorlink27= James Oleske | last28 = Podell | first28 = Richard N | authorlink28= Richard Podell | last29 = Shepherd | first29 = Charles | authorlink29= Charles Shepherd | last30 = Snell | first30 = Christopher R | authorlink30 = Christopher Snell | last31 = Speight | first31 = Nigel | authorlink31= Nigel Speight | last32 = Staines | first32 = Donald | authorlink32= Donald Staines | last33 = Stark | first33 = Philip B | authorlink33= Philip Stark | last34 = Stein | first34 = Eleanor | authorlink34= Eleanor Stein | last35 = Swartzberg | first35 = John | authorlink35= John Swartzberg | last36 = Tompkins | first36 = Ronald G | authorlink36= Ronald Tompkins | last37 = Underhill | first37 = Rosemary | authorlink37= Rosemary Underhill | last38 = Vallings | first38 = Rosamund | authorlink38= Rosamund Vallings | last39 = VanElzakker | first39 = Michael | authorlink39= Michael VanElzakker | last40 = Weir | first40 = William | authorlink40= William Weir | last41 = Zinn | first41 = Marcie L | authorlink41= Marcie Zinn | last42 = Zinn | first42 = Mark A | authorlink42= Mark Zinn | title = An open letter to the Lancet - again | date = Feb 10, 2016
| website = Virology Blog| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/ }}</ref> were sent to The Lancet, both calling for the data to be reanalysed. Twenty-four ME/CFS organizations from 14 different countries have written to Queen Mary University London requesting that the trial data be released for reanalysis.<ref name="MEACTION20160313openletr" /> To date, the authors of the trial and editor of The Lancet have refused such requests. Despite such criticism, the PACE trial continues to influence both government and the medical profession's approach to the treatment of ME/CFS in many countries.

One of the reasons that exercise may be harmful to people with ME/CFS, is the presence of [[post-exertional malaise]] (PEM), which is an exacerbation of symptoms following physical, mental or even emotional [[exertion]]. Studies have revealed immunological, muscular, [[Nervous system|neurological]], [[Autonomic nervous system|autonomic]] and [[Cardiovascular system|cardiovascular]] abnormalities in response to exercise in people with ME/CFS. As these results are not also found in healthy sedentary controls, the adverse effects of exercise cannot be said to be due to deconditioning.<ref name="TwiskF2015">{{Cite journal | last1 = Twisk | first1 = Frank NM | authorlink1 = Frank Twisk | last2 = Geraghty | first2 = Keith J | authorlink2 = Keith Geraghty | title = Deviant Cellular and Physiological Responses to Exercise in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome| journal = Jacobs Journal of Physiology | volume = 1 | issue =2 | pages = 007 | date = Jul 11, 2015 | url = http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf}}</ref>{{citation needed|reason=VanNess2010 / Workwell Foundation studies need to be cited here.}}{{citation needed|reason=The Lights epigenetic changes post-exercise study needs to be cited here.}}

People with ME/CFS should approach [[exercise]] with caution, as there is much evidence of potential for harm.<ref name="OxfordBrookesSurvey"/><ref name="ICC2011primer"/>

[[Anaerobic threshold]], use of heart rate monitors for activity and [[pacing]]. Analeptic, not aerobic. [[Energy Envelope Theory|Energy envelope]]/pacing - people do better if stay within their envelope, than push to increase activity

====Graded exercise therapy & Cognitive behavioral therapy ====
[[File:Emma Shorter.JPG|400px|thumb|right|[[Emma Shorter]], is a citizen of [[Scotland]]. Here, she gives testimony before Parliament's Petitions Committee on [[graded exercise therapy|GET]] and how it put her in a wheelchair]].
GET and CBT have been recently abandoned in the [[United Kingdom|UK]], [[Ireland]] and many parts of Europe by ME Clinics.<ref name="niceng206">{{Cite web | url = https://www.nice.org.uk/guidance/ng206 | title = Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline. | last=NICE Guideline Development Group | first = | authorlink = |publisher=[[National Institute for Health and Care Excellence]] | date = 2021-10-29}}</ref> They are highly controversial and not recommended by patients, most patient advocates, and research organizations nor by many doctors or researchers outside of the UK. Based on the flawed [[PACE trial]] which used the flawed [[Oxford criteria]] to diagnose and recruit patients, GET and CBT found its way into treating people with ME/CFS.

[[Exercise]], especially GET, can harm an ME/CFS patient further.<ref name="OxfordBrookesSurvey"/>

*[[Jennifer Brea]] walked home from her Neurologist's office and became [[severe and very severe ME|wheelchair-bound]].
*This is an experience of serious harm due to GET shared [https://twitter.com/TomKindlon/status/846425974052966400 by K. Miles, via Tom Kindlon on Twitter].
*[[Emma Shorter]] was able to walk a few minutes a day until GET put her in a wheelchair.
*[[Maik Speedy|Dr Maik Speedy]] was also seriously injured by GET and has been bedbound since.
*British MP [[Brynmor John]] collapsed outside the House of Commons gym in 1998 and [[Causes of death|died]], as a result of following his doctor's advice to exercise back to health.

==== Claims of recovery and cures ====
Charlatans claim they can cure CFS (per the CDC "there is no cure"<ref name="treatments">{{Cite web | url = https://www.cdc.gov/me-cfs/treatment/index.html | title = Treatment {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | last = | first = | date = 2018-07-03 | website = [[Centers for Disease Control and Prevention]]|language=en-us|archive-url=|archive-date=|access-date=2021-11-22}}</ref>) when in reality they may be able to treat [[chronic fatigue]] (CF). ME/CFS patients experience an ongoing improper immune response and other abnormalities for at least 6 months straight with a reduction in activity with a specific symptom set for at least 50% of the time.<ref name="etiology" /><ref>{{Cite web | url = https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html | title = IOM 2015 Diagnostic Criteria {{!}} Diagnosis {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-07}}</ref><ref>{{Cite web | url = https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/approach-to-diagnosis.html | title = Proposed Approach to ME/CFS Diagnosis in Children and Adults {{!}} Diagnosis {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-12 | website = [[Centers for Disease Control and Prevention]] |language=en-us|access-date=2018-09-07}}</ref>

Additionally, there have been media reports of some athletes―usually amateur athletes,―diagnosed with CFS that recovered after a relatively short period of time with rest, supplementation, and diet changes,<ref name="Inews2018" /><ref name="Times2017" /><ref name="ABC2018" /><ref name="London2019" /> but they may have had [[overtraining syndrome]],<ref name="spence">{{Cite web | last = Spence | first = Vance | authorlink = Vance Spence|website=Irish M.E. Association| title = Snippets {{!}} A presentation by MERGE Chairman Dr Vance Spence on 12 November 2005 at the Oak Tree Court Conference Centre, Coventry, at the invitation of the Warwickshire Network for ME|url = https://www.imet.ie/imet_website/snippets/7th_december_2005_snippets.html|quote=(Mommersteeg et al, 2005) shows that the "burnout" experienced by athletes differs from CFS, and is certainly not ME as described in earlier literature. This is just one example of many media stories - thrown out into the public arena - which have an uncertain meaning in the context of ME/CFS}}</ref> while some people with adrenal failure, [[idiopathic chronic fatigue]] or another fatiguing illness may be erroneously diagnosed with CFS<ref name="ICC"/><ref name="recovery">{{Cite web | url = https://www.researchgate.net/profile/Diane_Cox2/publication/257764167_Severe_Chronic_Fatigue_Syndrome_CFSME_Recovery_is_possible/links/00b49525d3a11018ad000000/Severe-Chronic-Fatigue-Syndrome-CFS-ME-Recovery-is-possible.pdf | title = Severe Chronic Fatigue Syndrome: Recovery is Possible | last = Burley | first = Lucy | authorlink=Lucy Burley | last2 = Cox | first2 = Diane | authorlink2 = Diane Cox | date = Aug 1, 2007|pages=339-344|language=en|doi=10.1177/030802260707000803|archive-url=|archive-date=|url-status=|access-date=2019-02-11 | last3 = Findley | first3 = Leslie|journal=British Journal of Occupational Therapy|volume=70|issue=8 | authorlink3 = Leslie Findley}}</ref><ref name="Anoop2012">{{Cite journal | last = Devasahayam | first = Anoop | author-link = | last2 = Lawn | first2 = Tara | authorlink2 = | last3 = Murphy | first3 = Maurice | authorlink3 = | last4 = White | first4 = Peter D | authorlink4 = Peter White | date = Jan 2012 | title = Alternative Diagnoses to Chronic Fatigue Syndrome in Referrals to a Specialist Service: Service Evaluation Survey | url = https://journals.sagepub.com/doi/epub/10.1258/shorts.2011.011127|journal=JRSM Short Reports|volume=3|issue=1|pages=1–5|doi=10.1258/shorts.2011.011127|issn=2042-5333|pmc=PMC3269106|pmid=22299071|access-date=|quote=Half of all the referred patients to a specialist CFS clinic had alternative medical and psychiatric diagnoses.|via=}}</ref> ME and CFS in professional athletes normally results in very premature retirement.<ref name="Squash">{{Cite news | title = Illness robbed Marshall of crowning glory | first = Sam | last = Murley | date = Apr 10, 2019 | url = https://www.royalgazette.com/sport/article/20190410/illness-robbed-marshall-of-crowning-glory/|publisher =Royal Gazette}}</ref><ref name="Annadale">{{Cite web| title = Annadale Striders Interview - Derek Graham | url = http://annadalestriders.co.uk/derek-graham-interview/|website=Annadale Striders}}</ref><ref name="Shattered">{{Cite book |url = https://books.google.co.uk/books/about/Shattered.html?id=mkbxPAAACAAJ&redir_esc=y | title = Shattered: A Champion's Fight Against a Mystery Illness | first=Peter | last= Marshall | first2 = Nick | last2 = Kehoe | date = 2001|publisher =Mainstream}}</ref><ref name="Olympian">{{Cite news | date = May 4, 2012| title = Linley Frame: Olympian and Chronic Fatigue Syndrome sufferer|url = https://www.abc.net.au/local/audio/2012/05/04/3495770.htm|website =Australian Broadcasting Corporation}}</ref><ref name="FIFA">{{Cite web|url = http://www.fifa.com/womensworldcup/classic-players/player=michelle-akers-usa-1329785.html|archive-url=https://web.archive.org/web/20150610042710/http://www.fifa.com/womensworldcup/classic-players/player=michelle-akers-usa-1329785.html|archive-date = 2015-06-10| title = Michelle Akers USA|website=FIFA}}</ref><ref name="olaf">{{Cite news | url = https://www.welt.de/sport/gallery118782921/Benefizspiel-fuer-den-schwer-kranken-Olaf-Bodden.html | title = Benefizspiel für den schwer kranken Olaf Bodden | last = | first = | date = 2021 | website = Die Welt|archive-url=|archive-date=|url-status=|access-date=2021-11-17}}</ref><ref name="LA">{{Cite news | title = Garton enjoying life after United in LA | first = Andy | last = Mitten | date = Jul 24, 2014 | url = https://www.manchestereveningnews.co.uk/sport/football/football-news/andy-mitten-billy-garton-enjoying-7508558.amp|website =Manchester Evening News}}</ref>

==Severely ill patients==
Considerable variation exists in the severity of the disease. The [[International Consensus Criteria]] lists the following severity levels (it should be noted that even "mild" ME/CFS consists of significant debility):

*Mild = 50% reduction in pre-illness activity levels
*Moderate = mostly housebound
*Severe = mostly bedridden
*Very Severe = totally bedridden, and needing help with basic functions.

At least [[Severe and very severe ME|25% of people with ME/CFS are bedbound or housebound]], often for years or even decades, so are largely an invisible population.<ref name="IOM2015MECFS" /><ref name="DerekPrisk2009" /><ref>[http://iacfsme.org/PDFS/2017JanNewsletter/8-Japan-2014-Patient-Survey.aspx ME/CFS Patient Survey Report: Ministry of Health Survey Reveals Harsh Reality of ME/CFS Patients in Japan - IACFSME - By Mieko Shinohara]</ref> So invisible in fact, that they have rarely been included as part of research because their level of debility precludes them from traveling to laboratories for required testing. The [[Open Medicine Foundation]]'s [[ME/CFS Severely Ill, Big Data Study]] will be the first in-depth study of people with a severe form of ME/CFS. This study has so far produced the groundbreaking paper [[Metabolic features of chronic fatigue syndrome]].
It is estimated that 25% of ME/CFS patients are severely ill and are housebound or bedbound.

Notable patients with severe or very severe ME/CFS include [[Whitney Dafoe]], [[Karina Hansen]], [[Lynn Gilderdale]], [[Laura Hillenbrand]], [[Tom Kindlon]], [[Vanessa Li]], [[Doctor Speedy]], [[Naomi Whittingham]], [[Jamison Hill]] and [[Jessica Taylor-Bearman]].

Though uncommon, there have been [[causes of death|instances of deaths]] which have been attributed to the disease (see [[Sophia Mirza]], [[Merryn Crofts]]). National Statistics report an average of 10 - 12 deaths per year in England and Wales [[Causes of death|partly or fully caused by ME/CFS]], with almost all patients dying being of working age.
<ref name="ONS2018">{{Cite web | url = https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/adhocs/008461mentionsofpostviralfatiguesyndromebenignmyalgicencephalomyelitisdeathsregisteredinenglandandwales2001to2016 | title = Mentions of postviral fatigue syndrome (benign myalgic encephalomyelitis), deaths registered in England and Wales, 2001 to 2016 | website = Office for National Statistics|access-date=2019-03-06}}</ref>

==Patients and psychiatry/psychology==

*Objections and scope
*Mind-body dualism
*[[Psychologization]]
*[[Cognitive behavioral therapy]]
*The [[PACE trial]]. See [http://www.meaction.net/wp-content/uploads/2015/05/MEAction%E2%80%93patient-view-of-the-PACE-Trial-Controversy.pdf Patient view of the PACE Trial controversy]
*[[Ethical issues]]
*[[Patient mental health]]

===Stigmatization===

*Pretty young women slumped on desk
*[[Yuppie Flu]]
*Accusations of laziness/lethargy
*Epidemiological evidence - age, gender, demographic, racial/cultural
*[[Stigma and discrimination]]

===Accusations of harassment===

*No arrests or convictions<ref>{{Cite web | url = http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ | title = Trial By Error, Continued: A Few Words About “Harassment” | last = Tuller | first = David | authorlink = David Tuller | date = Feb 1, 2016 | website = [[Virology blog]]|archive-url=|archive-date=|access-date=2019-01-21}}</ref>
* Potential harassment and "wild speculations" about threats to researchers were unsuccessful arguments used in [[Queen Mary University of London]]'s failed attempt to deny access to the [[PACE trial]] data at the 2015 tribunal. The tribunal judgement stated that the only evidence of harassment provided was a single heckler in a single seminar.<ref name="FirstTierTribunal2015">{{Cite news | title = First-tier tribunal: Information Rights Appeal EA/2015/0269. | url = https://informationrights.decisions.tribunals.gov.uk//DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF | page = 40 | last = Kennedy | first = Brian | last2 = Stephenson | first2 = Darryl | last3 = Watson | first3 = Nigel|quote=The evidence of <nowiki>[expert witness]</nowiki> Professor Anderson that third parties could not identify participants from the information alone and that, when pressed, he said that the chance of an "activist" being able to discover information that would lead to individual identification was remote, it was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder. The identity of those questioning the research, who had signed an open letter or supported it, was impressive.}}</ref>

*Mistreatment of patients, including forced harmful treatment of children, is not mentioned. E.g., the story of "B", aged 8,<ref name="StoryofB">{{cite web | title = The Story of B - Children with ME. Appropriate ME Treatment Parliament debate | date = Jan 24, 2018 | url = https://www.youtube.com/watch?v=5HzZ4U6yU6o&autoplay=0}}</ref> and [[Ean Proctor]] and others "The Mental Health Movement: Persecution of Patients?"<ref>[http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/The%20Mental%20Health%20Movement%20-%20Persecution%20of%20Patients.pdf The Mental Health Movement: Persecution of Patients?]</ref>

* A pattern of [[intimidation and bullying of PACE trial critics]] has included targeting scientists' employers, professional bodies, politicians including the [[Countess of Mar]], and smear tactics in the national press.

== Working with government to move forward ==

Advocates met with senate staffers the week of March 16, 2016, and discussed research and drug development by the [[NIH]], the [[Centers for Disease Control and Prevention|CDC]] reinstating and increasing funding and education based on [[IOM]] recommendations and the [[HHS]] funding to develop Centers of Excellence.<ref>[http://www.meaction.net/2016/03/16/meaction-meets-with-senate-staffers/ #MEAction meets with Senate staffers]</ref> [[The MEAction Network]] reports on this ongoing process.

====CDC Website updates====
*Jul 3, 2017, the CDC's Chronic Fatigue Syndrome page has been changed to [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (ME/CFS) and GET and CBT recommendations have been removed.<ref>{{Cite web|url = http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ | title = Trial By Error: The CDC Drops CBT/GET - Virology Blog | last = Tuller | first = David | authorlink = David Tuller | date = Jul 10, 2017 | website = [[Virology blog]]}}</ref><ref>[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref>

*Jul 12, 2018, the "Information for Healthcare Providers" tab and its sub-tabs were updated.<ref>[https://www.cdc.gov/me-cfs/healthcare-providers/index.html Information for Healthcare Providers - ME/CFS - CDC]</ref><ref>[https://www.cdc.gov/media/releases/2018/a0712-new-website-me-cfs.html New ME/CFS Web Content for Healthcare Providers - CDC - Jul 12, 2018]</ref>

* Feb 25, 2019, Dr. [[Elizabeth Unger]], Chief of CDC's Chronic Viral Disease Branch (CVDB), that houses the ME/CFS program, in collaboration between ''Medscape'' and the CDC put out brief video and commentary page with links to the CDC's July 12th, 2018 updates for medical professionals: ''[https://www.medscape.com/viewarticle/908622?src=rss Chronic Fatigue Syndrome: It's Real, and We Can Do Better].''<ref>{{Cite web | title = Chronic Fatigue Syndrome: It's Real, and We Can Do Better |url = https://www.medscape.com/viewarticle/908622?src=rss| website = Medscape |access-date=2019-02-25 | date = Feb 25, 2019 | last = Unger | first=Elizabeth | authorlink = Elizabeth Unger | last2 = Medscape | first2 = | authorlink2 = |archive-url=|archive-date=}}</ref>
'''MEAction input'''
*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/ CDC Revises its Information on ME] #[[MEAction]] report on the CDC July 2017 and July 2018 website updates. Recommendations for the CDC's ME/CFS page have been created from patient feedback on the updates as well as asking for further patient input.

==Expert opinions==

===Quotes from ME/CFS experts and patients===
*[[Individual quotes]]
*[http://thoughtsaboutme.com/quotes/ Thoughts About ME - List of Quotes]

===Doctors===
'''UK'''
*[[Jonathan Edwards]]
*[[Charles Shepherd]]

'''US'''
<div style="column-count:4;-moz-column-count:4;-webkit-column-count:4">

*[[Lucinda Bateman]]
*[[Lily Chu]]
*[[David Kaufman]]
*[[Nancy Klimas]]
*[[Anthony Komaroff]]
*[[Susan Levine]]
*[[Jose Montoya]]
*[[Benjamin Natelson]]
*[[Daniel Peterson]]
*[[Alan Pocinki]]
*[[Peter Rowe]]
*[[Ronald Tompkins]]
*[[David Tuller]]

</div>

===Researchers===
'''Australia'''
*[[Neil McGregor]]

'''UK'''
*[[Keith Geraghty]]

'''US'''
<div style="column-count:4;-moz-column-count:4;-webkit-column-count:4">
*[[Ron Davis]]
*[[Gunnar Gottschalk]]
*[[Maureen Hanson]]
*[[Mady Hornig]]
*[[Leonard Jason]]
*[[Betsy Keller]]
*[[Ian Lipkin]]
*[[Staci Stevens]]
*[[Suzanne Vernon]]
*[[Jarred Younger]]

</div>

===Patients===
====Australia====

===== Canada =====
*[[Scott Simpson]]

====Scotland====
*[[Emma Shorter]]

====US====
<div style="column-count:2;">
*[[Jennifer Brea]]
*[[Carol Head]]
*[[Ryan Prior]]
*[[Julie Rehmeyer]]
*[[Jaime Seltzer]]
</div>

====UK====
*[[Adam Lowe]]
*[[Graham McPhee]]
*[[Jessica Taylor-Bearman]]

====Ireland====
*[[Tom Kindlon]]

===Patient groups & charities===

'''[[:Category:Patient groups|Patient groups]]'''
<div style="column-count:3">
*[[:Category:American patient groups|American patient groups]]
*[[:Category:Australian patient groups|Australian patient groups]]
*[[:Category:Belgian patient groups|Belgian patient groups]]
*[[:Category:British patient groups|British patient groups]]
*[[:Category:Canadian patient groups|Canadian patient groups]]
*[[:Category:Dutch patient groups|Dutch patient groups]]
*[[:Category:Irish patient groups|Irish patient groups]]
*[[:Category:Italian patient groups|Italian patient groups]]
*[[:Category:New Zealand patient groups|New Zealand patient groups]]
*[[:Category:Norwegian patient groups|Norwegian patient groups]]
*[[:Category:Scottish patient groups|Scottish patient groups]]
*[[:Category:Swedish patient groups|Swedish patient groups]]
</div>

==Photos==
*[https://phoenixrising.me/stock-photography Stock photographs suitable for ME/CFS articles] - curated by [[Phoenix Rising]]
*[https://forums.phoenixrising.me/threads/the-real-me-a-stock-photography-resource-for-the-media.43734/ Advice on photograph choice]

==History==
*[[Osler's Web|''Osler's Web'']] is a book by [[Hillary Johnson]] on the early history of CFS.
*[[Thirty Years of Disdain|''Thirty Years of Disdain'']] by [[Mary Dimmock]] and Matthew Lazell-Fairman picks up on the ME/CFS history where Osler's Web leaves off.

=== Deaths of ME/CFS patients ===
*[[Causes of death]]
*[[Suicide]]

'''Death certificates with ME or CFS'''
*[[Merryn Crofts]]' death is attributed to ME.
*[[Sophia Mirza]]'s death is attributed to CFS.

In the UK, United States, and Australia there are further reports of loved ones who have died due to ME/CFS.<ref>[https://www.newscientist.com/letter/mg19125620-600-not-sadly-the-first/ Sadly, not the first (Comment Section)]</ref> See Editor's Note<ref>[https://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome/ First official UK death from chronic fatigue syndrome - New Scientist]</ref>

==Other tips and articles for journalists==
*2021, [https://www.theopennotebook.com/2021/01/26/how-to-report-with-accuracy-and-sensitivity-on-contested-illnesses/ How to Report with Accuracy and Sensitivity on Contested Illnesses] - by ME/CFS patient and science writer Julie Rehmeyer, Open Notebook
*Always interview a patient
*Interview more than one researcher (not just from the psychological etiology view)
*Avoid using derogatory, outdated & incorrect term "[[Yuppie Flu]]"
*Never shorten the disease name [[chronic fatigue syndrome]] (CFS) to the symptom [[chronic fatigue]] (CF). [[Chronic fatigue syndrome|CFS]], [[myalgic encephalomyelitis|ME]] or [[ME/CFS]] can be used to save print space.
*Use photographic imagery that represents the reality for patients - serious illness & disability - not well-groomed & slightly tired office workers at their computer or students with a pile of books sleeping at their desk. [[Solve ME/CFS Initiative]]'s [https://www.youtube.com/watch?v=cF2OuYFDriY Times Square Public Awareness Ad] shows the reality of the disease ME/CFS. Using photos of patients whether chronically ill yet functioning or a severely ill patient or stock photos that reflect life with this disease is necessary.
{{See also|Long_COVID#Articles_for_journalists_covering_Long_COVID|Articles for journalists covering Long COVID}}

==Learn more==
'''Key facts'''
*[https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf Key Facts] - Institute of Medicine (2015)

'''Research'''
*[[Institute of Medicine report]] (2015) The CDC based its updated [https://www.cdc.gov/me-cfs/index.html ME/CFS page] on information in this report.
*[[Notable studies]]

'''Films'''
*''[[Forgotten Plague]]'' is a US documentary about [[Ryan Prior]], an afflicted journalist who investigates the disease and its history and why the CDC has left millions sidelined from life; available for [http://www.forgottenplague.com/ streaming and DVD purchase]. (2015)
[[File:Forgotten Plague.jpeg|200px|thumb|center]]
*''[[Unrest]]'' is a US documentary film that aired on PBS's ''Independent Lens'' in 2018 and is available for [https://www.unrest.film/watch/#digital streaming] and [https://www.unrest.film/store/ DVD purchase]. [[Jennifer Brea]], a person with [[myalgic encephalomyelitis|ME]], directs. (2017)
[[File:Unrest.jpg|400px|thumb|center]]

'''ME/CFS organization and researchers material'''
*[https://www.youtube.com/watch?v=hRdn4A2SGic Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education] (The CDC's Dr. [[John Iskander]] interviews Dr. [[Anthony Komaroff]]. Video, 2016)
*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis] (2018) Guide for Caretakers
*[http://youtu.be/c2vIQ92wU9Y ME/CFS Diagnosis and Name with Dr Nancy Klimas (video)]
*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?] By the [[Open Medicine Foundation]]

'''[[Patient mental health]]'''

:Patients that had been deemed as suffering from mental health and not a biological illness:
:*[[Karina Hansen]] is a young [[Denmark|Danish]] woman taken from her family for 3 1/2 years due to [[Per Fink]]'s insistence her ME was due to mental health issues.
:*[[Sophia Mirza]] was taken forcibly from her home to a mental hospital only to be returned shortly after; she then died of ME.
:*[[Ean Proctor]] was taken from his parents as a young boy and he was told his "parents were letting him die." He had become [[paralysis|paralyzed]] and mute and was let go in the deep end of a pool to make him swim and another time put him on a scary theme park ride to scare him into moving.

'''More mental health information'''
*ME/CFS is not [[depression]]. It causes a lack of energy, not a lack of desire.<ref name="Griffith, 2008">{{Cite journal | last1 = Griffith | first1 = J.P. | authorlink1 = | last2 = Zarrouf | first2 = F.A. | authorlink2 = | title = A Systematic Review of Chronic Fatigue Syndrome: Don’t Assume It’s Depression| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2292451/| pmc =2292451| journal = Primary Care Companion to The Journal of Clinical Psychiatry | volume = 10 | issue = 2 | page = 120–128| date = 2008 | pmid = 18458765 | doi = 10.4088/pcc.v10n0206 }}</ref><ref name="Hawk, 2006">{{Cite journal | last1 = Hawk | first1 = C | authorlink1 = | last2 = Jason | first2 = L | authorlink2 = Leonard Jason | last3 = Torres-Harding | first3 = S | authorlink3 = Susan Torres-Harding| title = Differential diagnosis of chronic fatigue syndrome and major depressive disorder | journal = International Journal of Behavioral Medicine | volume = 13 | issue = 3 | page = 244-51 | date = 2006 | pmid = 17078775 | doi = 10.1207/s15327558ijbm1303_8
| url = http://www.healthrising.org/wp-content/uploads/2014/04/Hawk.-Jason.-Differential-Diagnosis-of-Chronic-Fatigue-Syndrome-and-Major-Depressive-Disorder.pdf }}</ref><ref name="myhill">{{Cite web|url = http://drmyhill.co.uk/wiki/CFS_or_depression_-_what_are_the_differences| title = CFS or depression - what are the differences | last = Myhill | first = Sarah | authorlink = Sarah Myhill | website = DrMyhill|access-date = 2021-03-22}}</ref>

==See also==
*[[Primer for the public#Disease_names_and_acronyms_around_the_world|Primer for the public (''Disease names and acronyms around the world'' section)]]

==References==
<references>

<ref name="Hickie2006">{{Cite journal | last1 = Hickie | first1 = Ian | authorlink1 = Ian Hickie | last2 = Davenport | first2 = Tracey | authorlink2 = Tracey Davenport | last3 = Wakefield | first3 = Denis | authorlink3 = Denis Wakefield | last4 = Vollmer-Conna | first4 = Ute | authorlink4 = Ute Vollmer-Conna | last5 = Cameron | first5 = Barbara | authorlink5 = Barbara Cameron | last6 = Vernon | first6 = Suzanne D | authorlink6 = Suzanne Vernon | last7 = Reeves | first7 = William C | authorlink7 = William Reeves | last8 = Lloyd | first8 = Andrew | authorlink8 = Andrew Lloyd | last9 = Dubbo Infection Outcomes Study Group | title = Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study | journal = BMJ | volume = 333 | issue =575 | date = Sep 14, 2006 | pmid = 16950834 | doi = 10.1136/bmj.38933.585764.AE| url = http://www.bmj.com/content/333/7568/575.long}}</ref>
<ref name="Hornig20150201immune">{{Cite journal | last1 = Hornig | first1 = Mady | authorlink1 = Mady Hornig | last2 = Montoya | first2 = José G | authorlink2 = Jose Montoya | last3 = Klimas | first3 = Nancy G | authorlink3 = Nancy Klimas | last4 = Levine | first4 = Susan | authorlink4 = Susan Levine | last5 = Felsenstein | first5 = Donna | authorlink5 = Donna Felsenstein | last6 = Bateman | first6 = Lucinda | authorlink6 = Lucinda Bateman | last7 = Peterson | first7 = Daniel L | authorlink7 = Daniel Peterson | last8 = Gottschalk | first8 = C Gunnar | authorlink8 = Gunnar Gottschalk | last9 = Schultz | first9 = Andrew F | authorlink9 = Andrew Schultz | last10 = Che | first10 = Xiaoyu | authorlink10 = Xiaoyu Che | last11 = Eddy | first11 = Meredith L | authorlink11 = Meredith Eddy | last12 = Komaroff | first12 = Anthony L | authorlink12= Anthony Komaroff | last13 = Lipkin | first13 = W Ian | authorlink13 = Ian Lipkin | title = Distinct plasma immune signatures in ME/CFS are present early in the course of illness | journal = Science Advances | volume = 1 | issue = 1 | date = Feb 1, 2015 | url = http://advances.sciencemag.org/content/1/1/e1400121}}</ref>
<ref name="Primer2014">{{Cite web | last1 = ((International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis)) | authorlink = International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis | last2 = Friedberg | first2 = Fred | authorlink2 = Fred Friedberg | last3 = Bateman | first3 = Lucinda | authorlink3 = Lucinda Bateman | last4 = Bested | first4 = Alison C | authorlink4 = Alison Bested | last5 = Davenport | first5 = Todd | authorlink5 = Todd Davenport | last6 = Friedman | first6 = Kenneth J | authorlink6 = Kenneth Friedman | last7 = Gurwitt | first7 = Alan R | authorlink7 = Alan Gurwitt | last8 = Jason | first8 = Leonard A | authorlink8 = Leonard Jason | last9 = Lapp | first9 = Charles W | authorlink9 = Charles Lapp | last10 = Stevens | first10 = Staci R | authorlink10 = Staci Stevens | last11 = Underhill | first11 = Rosemary A | authorlink11 = Rosemary Underhill | last12 = Vallings | first12 = Rosamund | authorlink12= Rosamund Vallings | date = 2014 | url=https://www.massmecfs.org/images/pdf/Primer_2014.pdf | title =Chronic Fatigue Syndrome Myalgic Encephalomyelitis Primer for Clinical Practitioners }}</ref>
<ref name="IOM2015MECFS">{{Cite web | last1 = Institute of Medicine (US) | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness| publisher = The National Academies Press | location = Washington, DC, US| date = Feb 10, 2015 | isbn = 978-0-309-31689-7| url = https://pubmed.ncbi.nlm.nih.gov/25695122/}}</ref>
<ref name="Jason, Katz, 2017">{{Cite journal | last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason | last2 = Katz | first2 = Ben | authorlink2 = Ben Katz | last3 = Gleason | first3 = Kristen | authorlink3 = | last4 = McManimen | first4 = Stephanie | authorlink4 = Stephanie McManimen | last5 = Sunnquist | first5 = Madison | authorlink5 = Madison Sunnquist | last6 = Thorpe | first6 = Taylor | authorlink6 = | title = A Prospective Study of Infectious Mononucleosis in College Students | journal = International Journal of Psychiatry | volume = 2 | issue = 1 | page = | date = 2017| doi = | url = https://www.researchgate.net/profile/Leonard_Jason/publication/312936696_A_prospective_study_of_Infectious_Mononucleosis_in_college_students/links/588a23cc92851c2779b2568c/A-prospective-study-of-Infectious-Mononucleosis-in-college-students.pdf }}</ref>
<ref name="Klimas20140621video">{{Cite web | last1 = Klimas | first1 = Nancy | authorlink1 = Nancy Klimas | title = ME/CFS Diagnosis and Name with Dr. Nancy Klimas (video)| date = Jun 21, 2014 | url = http://youtu.be/c2vIQ92wU9Y}}</ref>
<ref name="Komaroff20160217video">{{citation | last1 = Komaroff | first1 = Anthony | authorlink1 = Anthony Komaroff | last2 = Iskander | first2 = John | authorlink2 = John Iskander | title = Interview with Dr Anthony Komaroff | journal = CDC Public Health Ground Rounds - Beyond the Data - Chronic Fatigue Syndrome: Advancing Research and Clinical Education | date = Feb 17, 2016 | url = https://youtu.be/hRdn4A2SGic}}</ref>
<ref name="MEACTIONpacepetition">{{Cite web | last1 = #MEAction | authorlink1 = #MEAction | title = Petition: Misleading Claims Should Be Retracted| website = #MEAction | date = Oct 2015 | url = http://my.meaction.net/petitions/pace-trial-needs-review-now}}</ref>
<ref name="MEACTION20160313openletr">{{Cite web | last1 = #MEAction | authorlink1 = #MEAction | title = 24 organisations in 14 countries tell QMUL: Release the PACE data | date = Mar 13, 2016| url = http://www.meaction.net/2016/03/13/24-organisations-in-14-countries-tell-qmul-release-pace-data/#comment-2518}}</ref>
<ref name="MEASSUK20150529survey">{{Cite web | last1 = ME Association (UK) | authorlink1 = ME Association | date = May 29, 2015 | title = Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS| url = http://www.meassociation.org.uk/2015/05/23959/ }}</ref>
<ref name="NakatomiY2014">{{Cite journal | last1 = Nakatomi | first1 = Yasuhito | authorlink1 = Yasuhito Nakatomi | last2 = Mizuno | first2 = Kei | authorlink2 = Kei Mizuno | last3 = Ishii | first3 = Ishii | authorlink3 = Akira Ishii | last4 = Yasuhiro | first4 = Wada | authorlink4 = Yasuhiro Wada | last5 = Masaaki | first5 = Tanaka | authorlink5 = Masaaki Tanaka | last6 = Shusaku | first6 = Tazawa | authorlink6 = Shusaku Tazawa | last7 = Kayo | first7 = Onoe | authorlink7 = Kayo Onoe | last8 = Sanae | first8 = Fukuda | authorlink8 = Sanae Fukuda | last9 = Joji | first9 = Kawabe | authorlink9 = Joji Kawabe | last10 = Kazuhiro | first10 = Takahashi | authorlink10 = Kazuhiro Takahashi | last11 = Yosky | first11 = Kataoka | authorlink11 = Yosky Kataoka | last12 = Susumu | first12 = Shiomi | authorlink12= Susumu Shiomi | last13 = Kouzi | first13 = Yamaguti | authorlink13 = Kouzi Yamaguti | last14 = Masaaki | first14 = Inaba | authorlink14 = Masaaki Inaba | last15 = Hirohiko | first15 = Kuratsune | authorlink15 = Hirohiko Kuratsune | last16 = Yasuyoshi | first16 = Watanabe | authorlink16 = Yasuyoshi Watanabe | title = Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An ¹¹C-(R)-PK11195 PET Study| journal = Journal of Nuclear Medicine | volume = 55 | issue =6 | page = 945-50 | date = Mar 24, 2014 | pmid = 24665088 | doi = 10.2967/jnumed.113.131045| url = http://jnm.snmjournals.org/content/55/6/945.long}}</ref>
<ref name="NIHP2PFIN">{{citation | author = National Institutes of Health (US)| title = NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = Dec 9, 2014| url = https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf}}</ref>

<ref name="Phoenix20160222Norway2012">{{Citation | title = Norwegian patient survey: Experiences of therapeutic approaches (2012) | journal = Phoenix Rising Forum | date = Feb 22, 2016| url = http://forums.phoenixrising.me/index.php?threads/norwegian-patient-survey-experiences-of-therapeutic-approaches-2012-update.43193/ }}</ref>
<ref name="viroblogMECFS">{{Cite web | title = List of ME/CFS articles published at Virology Blog| url = http://www.virology.ws/mecfs/ }}</ref>
<ref name="DerekPrisk2009">{{Cite journal | last1 = Pheby | first1 = D | authorlink1 = Derek Pheby | last2 = Saffron | first2 = L | authorlink2 = | title = Risk factors for severe ME/CFS | journal = Biology and Medicine | volume = 1 | issue = 4 | date = 2009
| eissn = 09748369 | doi = | url = http://biolmedonline.com/Articles/vol1_4_50-74.pdf}}</ref>

</references>
[[Category:Primers]]

Sarah Myhill

2024-06-06T10:25:18Z

Forestglip:Added citations and new "citation needed"

[[File:Sarahmyhill.jpg|right]]
Doctor '''Sarah Myhill''' is a British naturopath running her own specialist [[Myalgic encephalomyelitis|M.E.]] clinic in Knighton, [[Wales|Wales,]] [[United Kingdom]].{{Citation needed|reason=Description of Dr. Myhill's practice|date=6 June 2024}} Her website is an extensive resource of articles and information based on her treatment of patients, it runs to 920 webpages and has had over six million individual visits.{{Citation needed|reason=data/numbers need citation|date=5 June 2024}}

Dr Myhill's view is that [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] is characterized by a cellular metabolic [[Mitochondrion|mitochondria]]l dysfunction and has published several studies.<ref name="Myhill2013" /><ref name="Booth2012" /><ref name="Myhill2009" /><ref>{{Cite web|url=http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure| title = CFS - The Central Cause: Mitochondrial Failure - DoctorMyhill|website=drmyhill.co.uk|access-date=2019-02-20}}</ref> Dr Myhill estimates that she has attempted to treat over 10,000 people with ME/CFS over her 30-year medical practice.<ref>{{Cite web|url=https://www.drmyhill.co.uk/wiki/Psychological_aspects_of_treating_CFS_and_ME#Introduction_-_are_CFS_and_ME_psychological_or_physical_disorders.3F|title=Psychological aspects of treating CFS and ME - DoctorMyhill|website=www.drmyhill.co.uk|access-date=2024-06-06}}</ref><ref>{{Cite web|url=https://www.drmyhill.co.uk/wiki/My_book_-_Paleo-Ketogenic:_The_Why_and_The_How#The_Blurb|title=My book - Paleo-Ketogenic: The Why and The How - DoctorMyhill|website=www.drmyhill.co.uk|access-date=2024-06-06}}</ref>

Dr Myhill explains her philosophy of medicine [http://www.doctormyhill.co.uk/wiki/About_my_practice here]. Sarah Myhill is currently suspended from the GMC register and is not allowed to practice as a doctor in the United Kingdom.<ref>{{Cite web|url=https://www.gmc-uk.org/doctors/2734668|title=Sarah Barbara Myhill - General Medical Council|website=General Medical Council|archive-url=https://www.gmc-uk.org/doctors/2734668|access-date=02/11/2023}}</ref>

==Clinical Practice==
Dr Myhill has an experienced staff supporting her clinical practice. For individuals unable to visit in person staff will coordinate with the individual's primary care provider, will send lab kits for blood draw to be analyzed by Dr Myhill. She produces detailed analysis of blood work, provides recommendations and will discuss cases by telephone. Blood test analysis provides measures of [[Adenosine triphosphate|ATP]] production and mitochondrial efficiency based upon her published research. While other physicians seem to understand her analytical methods, few, if any, are comfortable commenting on their significance. For decades, Dr Myhill has prioritized patient support and treatment results over independent corroboration.{{Citation needed}}

Dr Myhill also supports Miss Voss's Regime for Antiretroviral Treatment of Myalgic Encephalomyelitis<ref>{{Cite web|url=http://meversuscfs.blogspot.com/2018/06/arztanfragen-mein-therapieregime-fur.html| title = ME versus CFS: #Arztanfragen - Mein Therapieregime für die antiretrovirale Behandlung bei Myalgischer Enzephalomyelitis | last = Voss | first = Katharina | authorlink=Katharina Voss | date = 2018-06-09 | website = ME versus CFS|archive-url=|archive-date=|url-status=|access-date=2019-02-20}}</ref><ref>{{Cite web|url=http://www.drmyhill.co.uk/wiki/A_Regime_for_Antiretroviral_Treatment_of_Myalgic_Encephalomyelitis| title = A Regime for Antiretroviral Treatment of Myalgic Encephalomyelitis - DoctorMyhill|website=drmyhill.co.uk|access-date=2019-02-20}}</ref>: [[A Regime for Antiretroviral Treatment of Myalgic Encephalomyelitis]].

==Complaints==
Dr Myhill has been the subject of complaints to the [[General Medical Council]].<ref name="Myhill201004BBC" /> A recent Freedom of Information Act request confirmed that Dr Myhill is the most investigated doctor in the history of the GMC. She has been subject to 38 investigations before she gave up her GMC license in resignation; all investigations were found in her favour.<ref>Myhill & Robinson, The Underactive Thyroid, 2023 edition, pages 0-25</ref> None of the complainants against Dr Myhill were patients.{{Citation needed|reason= | date = 3 October 2020}}

A non-compliance Hearing was held from Sep 28th - Oct 2nd 2020 found in favor of Dr Myhill and no restrictions were placed on her practice.<ref name=":0" /> The non-compliance issue was about Dr Myhill's refusal to provide the GMC with the medical records of a patient who did not consent to them being shared. The GMC requested the records after the patient's GP made a complaint to the GMC, which the patient refused to support.<ref name=":0">{{Cite web|url=https://www.drmyhill.co.uk/wiki/Press_Release_re_my_Non_Compliance_Hearing_-_MPTS_-_Myhill_vs_GMC_Sept_28_to_Oct_1_2020?| title = Press Release re my Non Compliance Hearing - MPTS - Myhill vs GMC Sept 28 to Oct 1 2020 - DoctorMyhill|website=drmyhill.co.uk|access-date=2020-10-03}}</ref><ref name=":1">{{Cite web|url=https://www.mpts-uk.org/-/media/mpts-rod-files/dr-sarah-myhill-01-oct-20.pdf| title = Medical Practice Tribunal - Dr Sarah Myhill | last = Medical Practitioners Tribunal Service | first= | authorlink = | date = 2020-10-01 | website = |archive-url=|archive-date=|url-status=|access-date=}}</ref> A further complaint was made against her and Dr Myhill was brought to Tribunal in February 2023.<ref name=":2">{{Cite web|url=https://www.bmj.com/content/bmj/380/bmj.p278.full.pdf|title=GP suspended for nine months after promoting vitamins and iodine
for covid-19|last=Dyer|first=Claire|date=03/02/2023|website=British Medical Journal|access-date=02/11/2023}}</ref> The tribunal found that Myhill, who practises in Powys, promoted and endorsed the use of high doses of vitamins C and D and the inhalation of iodine through a salt pipe for the treatment of bacterial and viral infections including covid.<ref name=":2" /> The tribunal found that Myhill “does not practise evidence based medicine and may encourage false reassurance in her patients who may believe that they will not catch covid-19 or other infections if they follow her advice.” Myhill was also found guilty of serious misconduct in failing to reconsider her treatment plan after she failed to diagnose a fractured hip in a patient who had a fall, and in not recommending his admission to hospital when his condition had not improved. Dr Myhill was suspended for 9 month as a result of this Tribunal, with a review scheduled for the end which has not yet taken place.<ref name=":2" />

==Advocacy==
Dr Myhill is a vocal critic of the [[PACE trial]] and [[biopsychosocial model]] of [[ME/CFS]]. Dr Myhill's [[General Medical Council |GMC]] complaint regarding a number of PACE trial authors was first rejected without investigation by the GMC, after Dr Myhill appealed the GMC stated they would reconsider.{{citation needed}} Dr Myhill's action against the GMC for failing to provide reasoning for not investigating the PACE trial authors is still continuing, and began a number of months before the most recent GMC instigation of her practice started.<ref name=":0" /><ref name=":1" />

Dr Myhill is also the creator of the Medical Abuse In ME Sufferers (MAIMES) petition.

===<span id="maimes">Medical Abuse in ME Sufferers</span>===
Dr Sarah Myhill's [[Medical Abuse In ME Sufferers (MAIMES)]] petition calls for a UK public enquiry into the medical abuse and neglect experienced by British patients with [[myalgic encephalomyelitis]] (often called [[chronic fatigue syndrome]] or [[CFS/ME]] in the UK).<ref>{{Cite web|url=http://drmyhill.co.uk/wiki/Medical_Abuse_In_ME_Sufferers_(MAIMES)| title = Medical Abuse In ME Sufferers (MAIMES) | last = Myhill | first = Sarah | authorlink = Sarah Myhill | date = 2019-02-10 | website = |archive-url=|archive-date=|url-status=|access-date=}}</ref>

==Mitochondrial Energy Score test==
[[Cara Tomas|Tomas]] et al. (2019) attempted to replicate the findings of Myhill, Booth and McClaren-Howard in a study of just ten ME patients, but were unable to distinguish between patients and healthy controls. Myhill responsed highlighting differences in their methods that could have accounted for their results, and stating they incorrectly referred to the test as a diagnostic test for [[CFS/ME]].<ref name="Myhill2019">{{Cite web|url=https://www.drmyhill.co.uk/wiki/Response_to_the_paper_%27Assessing_cellular_energy_dysfunction_in_CFS/ME_using_a_commercially_available_laboratory_test%27_by_Cara_Tomas_et_al| title = Response to the paper 'Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test' by Cara Tomas et al | last = Myhill | first = Sarah | authorlink = Sarah Myhill | date = Aug 2019 | website = drmyhill.co.uk|archive-url=|archive-date=|url-status=|access-date=2019-08-16}}</ref>
*[https://www.drmyhill.co.uk/wiki/Response_to_the_paper_%27Assessing_cellular_energy_dysfunction_in_CFS/ME_using_a_commercially_available_laboratory_test%27_by_Cara_Tomas_et_al Dr Myhill's response to "Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test"]

==Notable studies==
*2009, [[Chronic fatigue syndrome]] and [[mitochondrion|mitochondrial]] dysfunction<ref name="Myhill2009" /> [http://www.ijcem.com/files/IJCEM812001.pdf (Full Text)]
*2012, [[mitochondrion|Mitochondrial]] dysfunction and the pathophysiology of [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] ([[ME/CFS]])<ref name="Booth2012" /> [http://www.ijcem.com/files/IJCEM1204005.pdf (Full Text)]
*2013, Targeting mitochondrial dysfunction in the treatment of [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] ([[ME/CFS]])<ref name="Myhill2013" /> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3515971/ (Full Text)]

==Book==
*2014, updated 2018 - ''[[Diagnosis and Treatment of Chronic Fatigue Syndrome: It's Mitochondria, Not Hypochondria]]'' by Sarah Myhill. Edited by, and with a chapter by [[Craig Robinson]].

==Talks and interviews==
(More talks and interviews can be found on [https://www.youtube.com/playlist?list=PLcy0gKHd07NUYlup5f9POdK9GDua8ecSm YouTube playlist for Dr Myhill])
*2007, Speaker at the 2nd [[Invest in ME International ME Conference]] on ''Treatments and Diagnosis – A GP’s Perspective''<ref>{{Cite web|url=http://www.investinme.org/IIMEC2.shtml#agenda | title = 2nd International ME Conference Agenda - IIMEC2 | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = 2007 | website = [[Invest in ME Research]]|archive-url=|archive-date=|url-status=|access-date=2019-02-20}}</ref> - [https://www.youtube.com/watch?v=Ye31fXTS-DM (Video)]
*2015, [http://www.doctormyhill.co.uk/wiki/Biocare_Summer_2015_Conference Biocare Summer 2015 Conference]
*2016, [http://www.drmyhill.co.uk/wiki/OMEGA_AGM_Seminar_2016 OMEGA AGM Seminar 2016]
*2018, [https://www.youtube.com/watch?v=UYOLVruElJU Dr. Myhill Calls For The GMC To Investigate The PACE Trial Authors]
* Mar 04, 2019 - Interviewed on [[The ME Show]] by [[Gary Burgess]] on her understanding and experience of treating people with ME and CFS, as well as her own ongoing battles with the General Medical Council<ref>{{Citation| title = Episode Six - Dr Sarah Myhill - The ME Show | url =http://www.buzzsprout.com/172265/967163-episode-six-dr-sarah-myhill|access-date=2019-08-13}}</ref> - [https://www.buzzsprout.com/172265/967163-episode-six-dr-sarah-myhill (Episode Link)]

=Online presence=
*[http://www.drmyhill.co.uk/ Website]
*[https://www.facebook.com/groups/108048875899603/ Support Dr Sarah Myhill public Facebook group]
*[https://www.facebook.com/groups/435645003161721/ Support for followers of Dr Myhill's protocol closed Facebook group]
*[https://www.facebook.com/Supporters-of-Dr-Sarah-Myhill-230752230289407/ Supporters of Dr Sarah Myhill Facebook page]
*[https://twitter.com/MyhillNews Twitter]
*[https://www.youtube.com/playlist?list=PLcy0gKHd07NUYlup5f9POdK9GDua8ecSm YouTube playlist]
*Address: Upper Weston, Knighton LD7 1SL, Wales, United Kingdom ({{Coord|52.326276|-3.155665|display=title}})

==Learn more==
*2012, [http://www.prohealth.com/library/showarticle.cfm?libid=17086 "Booth, Myhill, McLaren-Howard Comment on ME/CFS Mitochondrial Dysfunction Paper" by Norman E. Booth, Sarah Myhill, John McLaren-Howard for] [[ProHealth]]
*[http://drmyhill.co.uk/wiki/Medical_Abuse_In_ME_Sufferers_(MAIMES) MAIMES petition - Medical Abuse of ME Sufferers]
*[http://www.doctormyhill.co.uk/wiki/CFS_Checklist_-_start_off_and_check_your_treatment_regime_here CFS Checklist - start off and check your treatment regime here]

==See also ==
*[[John McLaren-Howard]]
*[[Ethical issues]]
*[[Medical Abuse In ME Sufferers (MAIMES)]]

==References==
<references>
<ref name="Booth2012">{{Cite journal | last1 = Booth | first1 = NE | last2 = Myhill | first2 = S | authorlink2 = Sarah Myhill | last3 = McLaren-Howard | first3 = J | authorlink3 = John McLaren-Howard | title = Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | journal = International Journal of Clinical Experimental Medicine | volume = 5 | issue = 3| pages = 208–220 | date = Jun 15, 2012 | pmid = 22837795
| url = http://www.ncbi.nlm.nih.gov/pubmed/22837795
|quote= | author-link = Norman Booth | authorlink4 = | authorlink5 = |via=}}</ref>
<ref name="Myhill2009">{{Cite journal | last1 = Myhill | first1 = S | last2 = Booth | first2 = NE | authorlink2 = Norman Booth | last3 = McLaren-Howard | first3 = J | authorlink3 = John McLaren-Howard | title = Chronic fatigue syndrome and mitochondrial dysfunction | journal = International Journal of Clinical Experimental Medicine | volume = 2 | issue = 1| pages = 1–16 | date = Jan 15, 2009 | pmid = 19436827
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/
|quote= | author-link = Sarah Myhill | authorlink4 = | authorlink5 = |via=}}</ref>
<ref name="Myhill2013">{{Cite journal | last1 = Myhill | first1 = S | last2 = Booth | first2 = NE | last3 = McLaren-Howard | first3 = J | authorlink3 = John McLaren-Howard | title = Targeting mitochondrial dysfunction in the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - a clinical audit | journal = International Journal of Clinical Experimental Medicine | volume = 6 | issue = 1| pages = 1–15 | date = 2013 | pmid = 23236553
| url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3515971/
|quote= | author-link = Sarah Myhill | authorlink4 = | authorlink5 = |via=|pmc=3515971 | authorlink2 = Norman Booth}}</ref>
<ref name="Myhill201004BBC">{{Cite news | title = Dr. Myhill on BBC News
| publisher = [[BBC news]]
| type = video | date = Apr 29, 2010
| url = https://www.youtube.com/watch?v=gW_GMCcuUcU }}</ref>
</references>

[[Category:Researchers]]
[[Category:UK researchers]]
[[Category:Clinicians]]
[[Category:British clinicians]]
[[Category:Authors]]
[[Category:Psychological paradigm critics]]
[[Category:PACE trial critics]]
[[Category:Advocates or allies]]
[[Category:British advocates or allies]]

DecodeME

2024-06-05T01:43:50Z

Forestglip:Improved style and grammar. Improved citations. Added two items to timeline and reordered timeline to make most recent events last.

[[File:DecodeME_logo.png|border|frameless|250px|right|class=white|alt=Decode ME logo]]
'''DecodeME''' is a UK-based genome-wide association study (GWAS), investigating the DNA of people with [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]], in comparison to healthy controls.<ref>{{Cite web|url=https://www.decodeme.org.uk/the-science/|title=The Science Behind the DNA Study|website=DecodeME|language=en-GB|access-date=2024-06-05}}</ref> DecodeME is also known as the '''ME/CFS Biomedical Partnership''', and is a collaboration between researchers, people with ME/CFS, their carers and the general public.<ref>{{Cite web|url=https://www.decodeme.org.uk/about-us/|title=About the ME/CFS Biomedical Partnership|website=DecodeME|language=en-GB|access-date=2024-06-05}}</ref>

DecodeME is the largest ever study investigating biological differences in people with ME/CFS. It seeks to find genetic factors that may help to determine the [[causes]] of ME/CFS and guide treatment development.<ref name="Announce25MEGroup">{{Cite web | url = https://25megroup.org/wp-content/uploads/2020/06/£3.2m-funding-for-DecodeME-largest-ever-DNA-study-of-ME.pdf | title=Patients, scientists and advocates celebrate £3.2m funding for DecodeME, the largest ever ME/CFS DNA study | last = 25% ME Group|first = | authorlink = | date = Jun 23, 2020 | website = [[25 Percent ME Group|25% ME Group]]| archive-url = | archive-date = |url-status = | access-date=2020-06-23}}</ref>

==Funding==
UK's Medical Research Council and the National Institute for Health Research have provided £3.2 million to fund the DecodeME study.<ref>{{Cite web|url=https://www.decodeme.org.uk/decodeme-dna-study-awarded-3m-funding/|title=Patients, scientists and advocates celebrate £3.2m funding for DecodeME, the largest ever ME/CFS DNA study|last=Support|first=Itineris|date=2020-06-22|website=DecodeME|language=en-GB|access-date=2024-06-05}}</ref>

== Patient criteria ==
DecodeME used questionnaires to screen patients. Participants must have been diagnosed with ME/CFS by a health professional. They must fullfill the [[National Academy of Medicine]] (NAM) criteria (formerly called Institute of Medicine) or the 2003 [[Canadian Consensus Criteria|Canadian Consensus criteria]] (CCC), both of which require [[post-exertional malaise]], and must be at least 16 years of age.

Participants with any other diagnoses which could cause chronic fatigue were excluded.

DecodeME planned to recruit at least 20,000 people with ME/CFS which began before the 2019 [[COVID-19|COVID]] pandemic and 5,000 whose ME/CFS arose after infection with the [[Severe acute respiratory syndrome coronavirus 2|SARS-CoV-2]] virus.<ref>{{Cite journal|title=DecodeME: community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome|date=2022-07-19|url=https://doi.org/10.1186/s12883-022-02763-6|journal=BMC Neurology|volume=22|issue=1|pages=269|last=Devereux-Cooke|first=Andy|last2=Leary|first2=Sian|last3=McGrath|first3=Simon J.|last4=Northwood|first4=Emma|last5=Redshaw|first5=Anna|last6=Shepherd|first6=Charles|last7=Stacey|first7=Pippa|last8=Tripp|first8=Claire|last9=Wilson|first9=Jim|last10=Mar|first10=Margaret|last11=Boobyer|first11=Danielle|doi=10.1186/s12883-022-02763-6|pmc=PMC9294749|pmid=35854226|issn=1471-2377}}</ref>

Participation was limited to those living in the [[United Kingdom]].<ref>{{Cite web|url=https://www.decodeme.org.uk/faqs/can-people-from-outside-the-uk-participate/|title=Can people from outside the UK participate?|website=DecodeME|language=en-GB|access-date=2024-06-05}}</ref>

==Partners==
The UK charities involved as partners are [[Action for ME]] and [[Forward-ME]]. The other partners are the Medical Research Council Human Genetics Unit, and the UK's National Institute for Health Research.<ref name="website">{{Cite web | url = https://www.decodeme.org.uk/ | title = Get Involved | last = DecodeME|website=DecodeME|language=en-GB|access-date=2020-06-23}}</ref>

==Timeline==
*Jul 2020, DecodeME website launched, patients able to sign-up for news and give contact details, study recruitment planned to start on Mar 2021.<ref name="Webinar2020">{{Cite web | url = https://www.decodeme.org.uk/join-our-webinar/ | title = Join our webinar Q&A | date = 2020-07-02 | last = |website=DecodeME|language=en-GB|access-date=2021-11-13}}</ref>
*26 Aug 2020, Official start expected in "very early 2021".<ref name="early2021">{{Cite web | title = About the ME/CFS Biomedical Partnership | last = DecodeME|first = | authorlink = | date = 2020-07-16 | website = DecodeME | url=https://www.decodeme.org.uk/faqs/ |archive-url=https://web.archive.org/web/20200716170315/https://www.decodeme.org.uk/faqs/|url-status=dead|archive-date=2020-07-16|quote=This is a fantastic start but we have a huge amount to do before we open recruitment. We’re aiming for 40,000 sign-ups by the time recruitment begins in March 2021 to give us the best chance of having at least 20,000 people taking part in the study.<br>Over the last few months, we have been working hard in preparation for the project officially starting next month.}}</ref>
*Nov 2021, Announcement that recruitment has been delayed until 2022, and will start with a small invited group first.<ref name="jan2022launch">{{Cite web | url = https://www.decodeme.org.uk/update-decodeme-to-launch-in-january-2022/ | title = Update: DecodeME to launch in January 2022 | date =2021-11-11 | last = DecodeME|website=DecodeME|language=en-GB|access-date=2021-11-13}}</ref>
*Nov 2020, DecodeME announces that [[London School of Hygiene and Tropical Medicine]] will no longer be involved. Co-Principle Investigator Dr [[Luis Nacul]] of LSHTM will no longer be an investigator, and Dr [[Eliana Lacerda]] wil no longer be on the Trial Management Group.<ref name="LSHTM">{{Cite web | url = https://www.decodeme.org.uk/partnership-update/ | title = Partnership update | date = 2020-11-30 | last = DecodeME|website=DecodeME|language=en-GB|access-date=2021-11-13}}</ref><ref name="about-2020">{{Cite web | url = https://www.decodeme.org.uk/about-us/ | title = About the ME/CFS Biomedical Partnership | last = DecodeME|first = | authorlink = |website=DecodeME|archive-url=http://web.archive.org/web/20200716192716/https://www.decodeme.org.uk/about-us/|archive-date=2020-07-16|url-status=dead|access-date=2021-11-13}}</ref>
*2021, Beyond the scenes update states that data will be analyzed by Thermo Fisher, first set due back by end of 2022. Data will takes months to analyze, possibly some by "halfway through 2023". Funding has been increased to add an extra 5000 people to the study who got ME/CFS following [[COVID-19|Covid]].<ref name="bindthescenes">{{Cite web | url = https://www.decodeme.org.uk/webinar-recording-transcript-why-patient-involvement-is-crucial/ | title = Why patient involvement is crucial | date = 2021 | last = |website=DecodeME|language=en-GB|access-date=2022-03-26}}</ref>
*14 Jun 2021, Ethics approval granted.<ref>{{Cite web|url=https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/decodeme/|title=DecodeME|website=Health Research Authority|language=en-GB|access-date=2024-06-05}}</ref><ref name="EthicsREC">{{Cite web | date = Jun 14, 2021 | title = DecodeME | url = https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/decodeme/|website=[[Health Research Authority]]|access-date=2022-03-26}}</ref>
*Jan 2022, Announcement that phase 1 due to begin on Jan 31st with 50 [[severe and very severe ME]] patients, plus 500 randomly selected participants who registered online.<ref name="BlogJan2022">{{Cite web | url = https://www.decodeme.org.uk/great-news-decodeme-opens-for-first-participants-this-month/ | title = Great news! DecodeME opens for first participants this month | date = Jan 2022 | website = DecodeME|language=en-GB|access-date=2022-03-26}}</ref>
*Mar 2024, Due to operational challenges, the study's deadline was extended by one year, to August 2025.<ref>{{Cite web|url=https://www.decodeme.org.uk/study-extension/|title=DecodeME completion date extended to August 2025|last=Connolly|first=Anne|date=2024-03-07|website=DecodeME|language=en-GB|access-date=2024-06-05}}</ref>
*Apr 2024, DecodeME announces process to share questionnaire and genetic data with eligible researchers not affiliated with the study.<ref>{{Cite web|url=https://www.decodeme.org.uk/data-access/|title=DecodeME launches data access process|last=Connolly|first=Anne|date=2024-04-29|website=DecodeME|language=en-GB|access-date=2024-06-05}}</ref>

==Results==

==Criticism==

==Investigators==
*[[Chris Ponting]] - Principle investigator
*[[Sonya Chowdhury]] - Co-investigator (PPI), CEO of Action for ME

== Patient and Public Involvement Steering Group ==
* [[Sonya Chowdhury]], [[Action for ME]] CEO, co-investigator (PPI) on the DecodeME Trial Management Group, founding charity member of the [[UK CFS/ME Research Collaborative]] (CMRC)
* [[Andrew Devereux-Cooke|Andy Devereux-Cooke]], co-founder of the [[Science for ME]]
* [[Margaret of Mar, 31st Countess of Mar]], representing [[Forward-ME]]
* [[Jim Wilson]], parent and carer, Associate Member of the [[CMRC]], and former Convenor of the CMRC Patient Advisory Group
* [[Emma Northwood]], [[ME Association]]
* [[Sian Leary]], advocate with Sheffield ME & Fibromyalgia Group, the [[ME/CFS Priority Setting Partnership]] (PSP) and [[MEActionUK]]
* [[Claire Tripp]], parent and carer involved with [[MEActionUK]]<ref name="about">{{Cite web | url = https://www.decodeme.org.uk/about-us/ | title = About the ME/CFS Biomedical Partnership|website=DecodeME|language=en-GB|access-date=2021-11-13}}</ref>

==Trial management group==
* Professor [[Chris Ponting]], Principal investigator
* [[Sonya Chowdhury]], [[Action for ME]] CEO, co-investigator (PPI)<ref name="about" />
* [[Andrew Devereux-Cooke|Andy Devereux-Cooke]], from the PPI<ref name="about" />

== Science Advisory Board ==
* Professor [[Stephen Holgate]]
* Professor [[Martin Tobin]]
* Professor [[Julia Newton]]
* Professor [[Brian Hughes]]
* Professor [[Benedicte Alexandra Lie]]<ref name="about" />

==Publications==
* 2023, Typing myalgic encephalomyelitis by infection at onset: A DecodeME study.<ref name="Bretherick2023">{{Cite journal|title=Typing myalgic encephalomyelitis by infection at onset: A DecodeME study|date=2023-08-21|url=https://openresearch.nihr.ac.uk/articles/3-20/v4|journal=NIHR Open Research|volume=3|pages=20|last=Bretherick|first=Andrew D.|author-link=Andrew Bretherick|last2=McGrath|first2=Simon J.|author-link2=Simon McGrath|last3=Devereux-Cooke|first3=Andy|author-link3=Andy Devereux-Cooke|last4=Leary|first4=Sian|author-link4=Sian Leary|last5=Northwood|first5=Emma|last6=Redshaw|first6=Anna|last7=Stacey|first7=Pippa|last8=Tripp|first8=Claire|last9=Wilson|first9=Jim|last10=Chowdhury|first10=Sonya|author-link10=Sonya Chowdhury|last11=Lewis|first11=Isabel|language=en|doi=10.3310/nihropenres.13421.4|issn=2633-4402}}</ref> - [https://openresearch.nihr.ac.uk/articles/3-20/v4 (Full text)]

==News and articles==
* Jun 2020, [https://www.theguardian.com/society/2020/jun/23/uk-to-launch-genetic-study-chronic-fatigue-syndrome-cfs UK to launch genetic study of Chronic Fatigue Syndrome] - The Guardian
* Jun 2020, [https://www.thetimes.co.uk/article/chronic-fatigue-syndrome-search-for-genetic-clues-kfclg0qh6? Chronic Fatigue Syndrome - search for genetic clues] - The Times
* Jun 2020, [https://25megroup.org/wp-content/uploads/2020/06/%C2%A33.2m-funding-for-DecodeME-largest-ever-DNA-study-of-ME.pdf Patients, scientists and advocates celebrate £3.2m funding for DecodeME, the largest ever ME/CFS DNA study] - [[25 Percent ME Group|25% ME Group]]
* Jun 2020, [https://www.meaction.net/2020/06/23/3-2million-granted-for-largest-me-cfs-dna-study-ever/ £3.2 million for largest ME/CFS DNA study ever] - #MEAction
* Jun 2020, [https://www.meresearch.org.uk/decodeme-the-largest-ever-me-cfs-dna-study/ DecodeME – the largest ever ME/CFS DNA study] - ME Research UK

== Webinars ==
* 18 Dec 2020, [https://www.youtube.com/watch?v=z7lXOYQnyH4 DecodeME Winter Webinar]<ref>{{Citation | title = DecodeME Winter Webinar |url =https://www.youtube.com/watch?v=z7lXOYQnyH4|language=en|access-date=2021-05-12}}</ref>
* 14 Apr 2021, [https://www.youtube.com/watch?v=ASDXDhgYHyY DecodeME April Webinar]<ref>{{Citation | title = DecodeME April Webinar |url =https://www.youtube.com/watch?v=ASDXDhgYHyY|language=en|access-date=2021-05-12}}</ref>

==Online presence==
*[https://www.decodeme.org.uk/ Website]
*[https://www.facebook.com/decodeMEstudy Facebook]
*[https://twitter.com/decodeMEstudy Twitter]

==See also==
*[[Chris Ponting]]
*[[Andrew Devereux-Cooke]]
*[[Action for ME]]
*[[ME/CFS Gene Study]]

==Learn more==
*[https://www.decodeme.org.uk/faqs/ FAQs - DecodeME]
*[https://www.ukbiobank.ac.uk/2020/02/using-uk-biobank-data-to-investigate-the-biomolecular-and-genetic-bases-to-myalgic-encephalomyelitis-me-cfs/ UK Biobank genetic and biomolecular ME/CFS study]

==References==
{{reflist}}

[[Category:Research initiatives]]
[[Category:British research initiatives]]

Primer for journalists

2024-05-22T13:00:24Z

Forestglip:grammar

{{mbox|text= Editors: Edits to this Primer may require the same edits to the other [[:Category:Primers|Primers]].}}
[[myalgic encephalomyelitis|Myalgic encephalomyelitis]] (ME), sometimes referred to as [[chronic fatigue syndrome]] (CFS), not to be confused with [[chronic fatigue]] (CF), is widely misunderstood. In this '''Primer for journalists''', we provide evidence-based statements (with links to further reading & sources) to support journalists writing about the disease. '''Chronic Fatigue Syndrome''' must never be shortened to ''Chronic Fatigue'' in the body of an article or its headline. This has caused much confusion for readers who do not understand ME/CFS is a debilitating lifelong illness and it is not the same as [[chronic fatigue]] (CF); CF is a symptom of many different illnesses. Although the [[Fukuda criteria|Fukuda]]<ref name="fukuda1994">{{Cite journal | last = Fukuda | first = K. | authorlink = Keiji Fukuda | last2 = Straus | first2 = S.E. | authorlink2 = Stephen Straus | last3 = Hickie | first3 = I. | authorlink3 = Ian Hickie | last4 = Sharpe | first4 = M.C. | authorlink4 = Michael Sharpe | last5 = Dobbins | first5 = J.G. | authorlink5 = James Dobbins | last6 = Komaroff | first6 = A. | authorlink6 = Anthony Komaroff | date = 1994-12-15 | title = The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group | url = https://www.researchgate.net/profile/Michael_Sharpe2/publication/247808895_The_Chronic_Fatigue_Syndrome_A_Comprehensive_Approach_to_Its_Definition_and_Study/links/0c96053201643bfc4b000000/The-Chronic-Fatigue-Syndrome-A-Comprehensive-Approach-to-Its-Definition-and-Study.pdf|journal=Annals of Internal Medicine|volume=121|issue=12 | pages = 953–959 |issn=0003-4819|pmid=7978722|via=|doi=10.7326/0003-4819-121-12-199412150-00009|publisher=American College of Physicians}}</ref> and the [[Oxford criteria|Oxford Criteria]]<ref name="PMC1293107">{{Cite journal | title = A report--chronic fatigue syndrome: guidelines for research. | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/|journal=Journal of the Royal Society of Medicine | date = Feb 1991|issn=0141-0768|pmc=1293107|pmid=1999813 | pages = 118–121 |volume=84|issue=2 | first = MC | last = Sharpe | first2 = LC | last2 = Archard | first3 = JE | last3 = Banatvala | first4 = LK | last4 = Borysiewicz | first5 = AW | last5 = Clare | first6 = A | last6 = David | first7 = RH | last7 = Edwards | first8 = KE | last8 = Hawton | first9 = HP | last9 = Lambert}}</ref> were previously used for diagnosing ME/CFS, they are now regarded as overly broad, there being criticism that patients were being [[misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome|misdiagnosed]] in both clinical and research settings as having ME/CFS when in fact they were suffering from the symptom CF or another fatiguing diagnosis.<ref name="Vink2019">{{Cite journal | last = Vink | last2 = Vink-Niese | date = 2019-09-20 | title = Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies | url = https://www.mdpi.com/2075-4418/9/4/124|journal=Diagnostics|language=en|volume=9|issue=4|page=124|doi=10.3390/diagnostics9040124|issn=2075-4418 | first = Mark | first2 = Alexandra|pmc=|pmid=|quote= | author-link = Mark Vink | authorlink2 = Alexandra Vink-Niese|access-date=|via=}}</ref><ref name="Carruthers, 2003" /><ref name="ICC2011primer" /></div><ref>{{Cite web | title = What Does a True ME Definition Look Like? | url = https://www.meadvocacy.org/what_does_a_true_me_definition_look_like|website=MEadvocacy.org|access-date=2019-01-25 | first = | last = }}</ref><ref name="fukuda1994"/><ref>[http://theargusreport.com/us-nih-report-calls-uk-definition-mecfs-scrapped/ US NIH Report Calls for UK Definition of ME/CFS to be Scrapped - The Argus Report By: Penny Swift]</ref><ref>{{Cite web | url = http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/|website=occupyme.net|access-date=2019-01-25 | title = AHRQ Evidence Review Changes Its Conclusions | date = Aug 16, 2016 | last = Spotila | first=Jennie | authorlink=Jennie Spotila | last2 = Dimmock | first2 = Mary | authorlink2 = Mary Dimmock|archive-url=|archive-date=}}</ref>

In the past, there have been media reports of athletes diagnosed with ME or CFS who have recovered in a relatively short period of time after rest, supplementation, and diet changes;<ref name="Inews2018">{{Cite news |url = https://inews.co.uk/news/health/marathon-runner-quit-work-me-cfs-diet-change/ | title = Marathon runner forced to quit work after developing ME claims diet change gave him his life back | first = Claudia | last = Tanner|publisher =iNews | date = 2018}}</ref><ref name="Times2017">{{Cite news | url = https://www.thetimes.co.uk/article/muslim-fighter-with-me-who-left-an-arranged-marriage-to-win-world-title-svxhhzt57 | title = Muslim fighter with ME who left an arranged marriage to win world | last = Broadbent | first = Rick | date = 2017-12-02|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref><ref name="ABC2018">{{Cite news |url = http://www.abc.net.au/7.30/committee-reviews-potentially-harmful-and-old/10010408 |at=6mins 18s| title = Committee reviews 'potentially harmful and old fashioned' chronic fatigue treatments|publisher =ABC News | first =Andy|last = Park | first2 = Clare | last2 = O'Halloran}}</ref><ref name="London2019">{{Cite news | url = https://www.thetimes.co.uk/article/nathan-douglas-london-2012-was-the-darkest-period-of-my-life-vxt5gftcx | title = Nathan Douglas: London 2012 was the darkest period of my life | last = Broadbent | first = Rick | date = 2019-02-27|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref> these athletes may have had [[overtraining syndrome]] (which has the symptom of [[chronic fatigue]]) and not ME or CFS,<ref name="spence"/> while people with adrenal failure, [[idiopathic chronic fatigue]] or other fatiguing illnesses may be erroneously diagnosed with CFS.<ref name="recovery"/><ref name="Anoop2012"/><ref name="ICC" /> ME and CFS in professional athletes is normally a career-ending diagnosis.<ref name="Squash" /><ref name="Annadale"/><ref name="Shattered"/><ref name="Olympian"/><ref name="FIFA"/><ref name="olaf"/><ref name="LA"/>

<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="''What is ME/CFS'' By Open Medicine Foundation - OMF. Linda Tannenbaum, Founder & CEO/President, talks about ME/CFS and how OMF is leading research and delivering hope (2018)">https://www.youtube.com/watch?v=pqDubEeIBtA</embedvideo>

The core [[List of symptoms in ME CFS|ME/CFS symptoms]] are: [[post-exertional malaise]] (PEM); [[chronic fatigue]] (CF); [[unrefreshing sleep]]/[[Sleep dysfunction|sleep problems]]; and [[Cognitive dysfunction|cognitive impairment]]/[[brain fog]] and/or [[orthostatic intolerance]] (OI).<ref name="symptoms"/><ref name="clinicians">{{Cite web | url = https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness {{!}} Clinicians Guide | last = | first = | date = 2015 | publisher=Nation Academies Press|archive-url=|archive-date=|access-date= | authorlink = }}</ref>{{Rp|9-10}} A patient can have many more symptoms<ref name="what-is">{{Cite web | url = https://www.omf.ngo/what-is-mecfs/ | title = What is ME/CFS? | last = | first = | date = |archive-url=|archive-date=|access-date= | authorlink = |website=[[Open Medicine Foundation]]}}</ref> and meet different criteria. [[Systemic Exertion Intolerance Disease]] (SEID), an ME/CFS criterion, allows for a patient to be [[Systemic Exertion Intolerance Disease#Diagnostic criteria|diagnosed with the minimum core symptoms]]<ref name="DiagnosticAlgorithm">{{Cite web | url = https://www.nap.edu/resource/19012/MECFS_DiagnosticAlgorithm.jpg | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - Diagnostic Algorithm | last = | first = | author-link =| date = 2015 | website = nap.edu|archive-url=https://web.archive.org/web/20190528223706/https://www.nap.edu/resource/19012/MECFS_DiagnosticAlgorithm.jpg|archive-date=2019-05-28|access-date=}}</ref> and the patient may have other symptoms.<ref name="clinicians"/<ref name="IOM2015">{{Cite web | url = https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title = Beyond Myalgid Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness - Clinician's Guide | date = 2015 | access-date=|website=nap.edu | last = | first = | authorlink = |archive-url=|archive-date= | page = 9}}</ref> The [[Canadian Consensus Criteria]] (CCC) requires the core symptoms and [[Nervous system|neurological]], [[Autonomic nervous system|autonomic]], [[Neuroendocrine system|neuroendocrine]], [[immune system]], and [[myalgia]] symptoms to meet [[Canadian Consensus Criteria#Definition|its ME/CFS diagnostic criteria]].<ref name="Carruthers, 2003">{{Cite journal | last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers | last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson | last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas | last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner | last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested | last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry | last9 =Joshi | first9 = Pradip | authorlink9 = Pradip Joshi | last10 = Powles | first10 = AC Peter | authorlink10 = A C Peter Powles | last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey | last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols | journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | pages = 7-115 | date = 2003 | pmid = | doi = 10.1300/J092v11n01_02
| url = http://phoenixrising.me/wp-content/uploads/Canadian-definition.pdf }}</ref> The [[International Consensus Criteria]] (ICC) is used to diagnose [[myalgic encephalomyelitis]] (ME) which requires the core symptoms and neurological, immune/[[Gastrointestinal system|gastrointestinal]]/genitourinary impairment, and [[portal:Energy metabolism|energy metabolism]]/[[Ion transportation|ion transport]] impairment [[International Consensus Criteria#Criteria|symptoms for a diagnosis]].<ref name="ICC">{{Cite journal | last = Carruthers | first=Bruce M. | author-link = Bruce Carruthers | last2 = van de Sande | first2 = Marjorie I. | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Klimas | first4 = Nancy G. | author-link4 = Nancy Klimas | last5 = Broderick | first5 = Gordon | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = Terry | authorlink6 = Terry Mitchell | last7 = Staines | first7 = Donald | author-link7 = Donald Staines | last8 = Powles | first8 = A.C. Peter | authorlink8 = A C Peter Powles | last9 = Speight | first9 = Nigel | authorlink9 = Nigel Speight | last10 = Vallings | first10 = Rosamund | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = Lucinda | authorlink11 = Lucinda Bateman | last12 = Baumgarten-Austrheim | first12 = Barbara | author-link12 = Barbara Baumgarten-Austrheim | last13 = Bell | first13 = David | author-link13 = David Bell | last14 = Carlo-Stella | first14 = Nicoletta | author-link14 = Nicoletta Carlo-Stella | last15 = Chia | first15 = John | author-link15 = John Chia | last16 = Darragh | first16 = Austin | author-link16 = Austin Darragh | last17 = Jo | first17 = Daehyun | author-link17 = Daehyun Jo | last18 = Lewis | first18 = Donald | author-link18 = Donald Lewis | last19 = Light | first19 = Alan | author-link19 = Alan Light | last20 = Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21 = Mena | first21 = Ismael | author-link21 = Ismael Mena | last22 = Mikovits | first22 = Judy | author-link22 = Judy Mikovits | last23 = Miwa | first23 = Kunihisa | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = Modra | author-link24 = Modra Murovska | last25 = Pall | first25 = Martin | author-link25 = Martin Pall | last26 = Stevens | first26 = Staci | author-link26 = Staci Stevens | date = 2011-08-22 | title=Myalgic encephalomyelitis: International Consensus Criteria | url = https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.2011.02428.x|journal=Journal of Internal Medicine|language=en|volume=270|issue=4|pages=327–338|doi=10.1111/j.1365-2796.2011.02428.x|issn=0954-6820|pmc=3427890|pmid=21777306|via=}}</ref>

The acronym ME/CFS is widely used in research, by clinicians, patient organizations, and patients.

"The most common overlapping condition with ME/CFS is [[fibromyalgia]]."<ref name="ICC2011primer">{{citation | last1 = Carruthers | first1 = BM | authorlink1 = Bruce Carruthers | last2 = van de Sande | first2 = MI | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = KL | authorlink3 = Kenny de Meirleir | last4 = Klimas | first4 = NG | authorlink4 = Nancy Klimas | last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick | last6 = Mitchell | first6 = T | authorlink6 = Terry Mitchell | last7 = Staines | first7 = D | authorlink7 = Donald Staines | last8 = Powles | first8 = ACP | authorlink8 = A C Peter Powles | last9 = Speight | first9 = N | authorlink9 = Nigel Speight | last10 = Vallings | first10 = R | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = L | authorlink11 = Lucinda Bateman | last12 = Bell | first12 = DS | authorlink12 = David Bell | last13 = Carlo-Stella | first13 = N | authorlink13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | authorlink14 = John Chia | last15 = Darragh | first15 = A | authorlink15 = Austin Darragh | last16 = Gerken | first16 = A | authorlink16 = Anne Gerken | last17 = Jo | first17 = D | authorlink17 = Daehyun Jo | last18 = Lewis | first18 = DP | authorlink18 = Donald Lewis | last19 = Light | first19 = AR | authorlink19 = Alan Light | last20 = Light | first20 = KC | authorlink20 = Kathleen Light | last21 = Marshall-Gradisnik | first21 = S | authorlink21 = Sonya Marshall-Gradisnik | last22 = McLaren-Howard | first22 = J | authorlink22 = John McLaren-Howard | last23 = Mena | first23 = I | authorlink23 = Ismael Mena | last24 = Miwa | first24 = K | authorlink24 = Kunihisa Miwa | last25 = Murovska | first25 = M | authorlink25 = Modra Murovska | last26 = Stevens | first26 = SR | authorlink26 = Staci Stevens | title = Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners | date = 2012 | isbn = 978-0-9739335-3-6 | url = http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf}}</ref><ref name="Primer2014"/><ref name="Jason2001">{{Cite journal | last= Jason | first = Leonard | last2 = Taylor | first2 = R.R. | last3 = Kennedy | first3 = C.L. | last4 = Song | first4 = S | last5 = Johnson | first5 = D | last6 = Torres | first6 = S.R. | date = 2001-01-01 | title = Chronic fatigue syndrome: Comorbidity with fibromyalgia and psychiatric illness | url = https://www.researchgate.net/publication/285787383_Chronic_fatigue_syndrome_Comorbidity_with_fibromyalgia_and_psychiatric_illness|journal=Medicine and Psychiatry|volume=4 | pages = 29–34}}</ref> While some have posited ME/CFS and fibromyalgia are variants of the same illness, [[Benjamin Natelson]], MD summoned considerable amounts of data that suggest the two illnesses differ with different pathophysiologic processes leading to different treatments.<ref>{{Cite journal | last = Natelson | first = Benjamin H. | date = 2019-02-19 | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia: Definitions, Similarities, and Differences | url = https://www.clinicaltherapeutics.com/article/S0149-2918(19)30003-7/abstract|journal=Clinical Therapeutics|language=English|volume=41|issue=4 | page = 612|doi=10.1016/j.clinthera.2018.12.016|issn=0149-2918|pmid=30795933}}</ref>

While ME/CFS is recognised as a physical disease by researchers, a [[Psychologization|psychiatric approach]] was taken with ME/CFS in the past, and some clinicians are still using this practice. At this time there are no approved drug treatments. In the past, [[Graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) were used for ME/CFS. They are now discouraged or banned by major health guidelines as they were based on a psychological view of the illness and have lead to patient harm.<ref>{{Cite web|url=https://www.nice.org.uk/guidance/ng206|title=Overview {{!}} Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management {{!}} Guidance {{!}} NICE|date=2021-10-29|website=www.nice.org.uk|access-date=2024-05-19}}</ref><ref name="etiology" />The [[Centers for Disease Control and Prevention]] (CDC) website states "ME/CFS is a '''biological illness''', not a psychologic disorder" and impacts multiple body systems.<ref name="etiology">{{Cite web | title = Etiology and Pathophysiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html|website=[[Centers for Disease Control and Prevention]] | date = 2018-11-08| access-date = 2019-01-22 |language=en-us}}</ref> The CDC recognizes the hallmark symptom of PEM which is a worsening of symptoms after physical, mental or emotional exertion<ref name="symptoms">{{Cite web | title = Symptoms of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-01-22|language=en-us}}</ref> and says [[ME/CFS]] is a "disabling and complex disease."<ref name="whatis">{{Cite web | url = https://www.cdc.gov/me-cfs/about/index.html | title = What is ME/CFS? {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-04-12}}</ref>

[[File:SEID algorithm.JPG|400px|thumb|right|Diagnostic Algorithm for [[Systemic Exertion Intolerance Disease|SEID]]'s minimum [[List of symptoms in ME CFS#Systemic Exertion Intolerance Disease (SEID) symptom list|ME/CFS core symptoms]]]]

==What do we know?==
ME is a debilitating illness that has been recognized as a neurological disease by the [[World Health Organization]] (WHO) since 1969.<ref name="icd10">{{Cite book | url = https://apps.who.int/iris/bitstream/handle/10665/70934/ICD_10_1969_eng_v2a.pdf?sequence=3&isAllowed=y | title = International Classification of Diseases | last = World Health Organization | first = |publisher=WHO| year = 1969|isbn=|editor-link=|edition=Eighth revision|volume=2|location=Geneva|pages=173|chapter=|quote=Encephalomyelitis (chronic),<br>(myalgic, benign) 323|editor-last2=|editor-link2=}}</ref>

It is a systemic [[Neuro-immune disease|neuroimmune]] disease characterized by [[post-exertional malaise]] (PEM) (a severe worsening of symptoms after even minimal [[exertion]]). It causes dysregulation of both the [[immune system]] and the [[nervous system]]. The effects of ME are devastating enough to leave [[Severe and very severe ME|25% of patients housebound or bedbound]]. For moderate to severe patients, the disability of living with ME is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades.

[[ME/CFS]] costs the US economy up to $24 billion per year in direct medical costs, and lost production.<ref name="IOM2015MECFS" /> Despite this, funding for research is not commensurate with the level of disease burden. In the 2015 financial year, the [[National Institutes of Health]] (NIH) provided only $5 million in research funding for ME/CFS, which is less funding than hayfever. This is in stark contrast to funding levels for other similarly disabling illnesses, like [[multiple sclerosis]] ($105 million) and HIV/AIDS ($3 billion).{{Citation needed|reason=Reference needed for NIH funding levels | date = 4 November 2019}} The [[Institute of Medicine]], a special advisory committee of the [[U.S. Department of Health and Human Services]] (HHS) (ref: [[Chronic Fatigue Syndrome Advisory Committee|CFSAC]] recommendations) and [[NIH]] expert advisory panel agree that it is imperative to increase research funding into ME/CFS.<ref name="NIHP2PFIN" />

== Disease onset and course of illness==
[[Onset of ME/CFS|ME/CFS can begin]] from many acute/sudden<ref name="Chu2019">{{Cite journal | last = Chu | first = Lily | authorlink = Lily Chu | last2 = Valencia | first2 = Ian J. | authorlink2 = Ian Valencia | last3 = Garvert | first3 = Donn W. | authorlink3 = | last4 = Montoya | first4 = Jose G. | authorlink4 = Jose Montoya | authorlink5 = | date = Jan 14, 2019 | title = Onset patterns and course of myalgic encephalomyelitis/chronic fatigue syndrome | url = https://www.frontiersin.org/articles/10.3389/fped.2019.00012/abstract|journal=Frontiers in Pediatrics|volume=|issue=|pages=|doi=10.3389/fped.2019.00012|quote=|via=}}</ref> events: usually [[Viral onset hypothesis|viral]] or [[Bacterial disease onset|bacterial]] infections, but also [[trauma]], surgery or childbirth, [[anaphylaxis|allergic reaction]], and [[stress]].<ref>{{Cite web | url = https://www.cdc.gov/grand-rounds/pp/2016/20160216-presentation-chronic-fatigue-H.pdf | title = CDC Public Health Grand Rounds - Chronic Fatigue Syndrome - Advancing Research and Clinical Education | last = | first = | author-link =| date = |website=[[Centers for Disease Control and Prevention]] | page = 6|archive-url=|archive-date=|access-date=}}</ref> There is also a gradual onset in some people,<ref name="Chu2019" /><ref name="clinical">{{Cite web | url = https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/index.html | title = Presentation and Clinical Course of ME/CFS {{!}} Information for Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS | date = 2018-12-12 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-02-07}}</ref> that is not attributed to any one event. Occasionally, ME/CFS has been triggered by [[Environmentally acquired illness|environmental toxins]] or the receipt of an [[Vaccine|immunizing injection]].<ref>[https://www.masscfids.org/images/pdf/Primer_2014.pdf Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc]</ref> Some say that the disease [[Myalgic encephalomyelitis|ME]] always has an acute/sudden [[Infection|infectious]] onset.<ref name="Evans2018">{{Cite journal | last = Evans | first = Meredyth | authorlink = Meredyth Evans | authorlink2 = Leonard Jason | date = 2018 | title = Onset patterns of chronic fatigue syndrome and myalgic encephalomyelitis | url = https://www.openaccessjournals.com/articles/Onset%20patterns%20of%20chronic%20fatigue%20syndrome%20and%20myalgic%20encephalomyelitis.pdf|journal=Research on Chronic Diseases|volume=|issue=|pages=2|quote=|via= | last2 = Jason | first2 = Leonard}}</ref>

The disease [[ME/CFS]] is often diagnosed when a person does not recover from a [[flu-like illness]], [[mononucleosis]] or another [[HHV|herpesvirus]], [[Q fever]], an unidentified [[virus]], or [[:Category:Infectious agents|other infection]], and meets one or more [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome|diagnostic criteria for either ME, CFS, or ME/CFS]].<ref name="IOM2015"/>{{Rp|157-158}}<ref>[http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/ The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014]</ref> Patients experience [[List of symptoms in ME CFS|numerous symptoms]] and disease severity which fluctuate from day to day, week to week, month to month, year to year, and even decade to decade. Furthermore, symptoms and disease severity vary among patients.<ref name="Primer2014"/><ref name="WebMD">[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref>

The CDC recognizes that there can be different causes and it is possible that two or more things could cause the illness. Areas of research include infections, [[immune system]] changes, physical or psychological [[stress]] affecting body chemistry, changes in [[Metabolic|energy production]], and a possible [[Genetics of chronic fatigue syndrome|genetic link]].<ref name="causes">{{Cite web | title = Possible Causes {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/about/possible-causes.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-01-27|language=en-us}}</ref><ref name="etiology" /> The CDC notes there are abnormalities with the immune system, [[Metabolic|cellular metabolism]], neuroendocrine disturbances, and [[blood pressure]] or heart rate regulation.<ref name="etiology" />
===Not a mental health disorder===
In the past, CFS was believed to be a mental health disorder. This is why the CDC now states: "ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems."<ref name="etiology" />

===No clear evidence that ME/CFS is contagious===
[[:Category:Infectious agents|Infectious episodes]] have led to [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|outbreaks]] over the years and 72% of ME/CFS patients report an [[Onset of ME/CFS|onset]] of a viral or bacterial infection.<ref>{{Cite web | url = https://www.cdc.gov/grand-rounds/pp/2016/20160216-presentation-chronic-fatigue-H.pdf | title = CDC Public Health Grand Rounds - Chronic Fatigue Syndrome - Advancing Research and Clinical Education | last = | first = | author-link =| date = |website=cdc.gov | page = 6|archive-url=|archive-date=|access-date=}}</ref> Nowadays, the vast majority of ME/CFS cases are sporadic rather than epidemic - although some outbreaks have been caused by known viruses such as the [[2003 Hong Kong outbreak|SARS pandemic]] and [[2019 Coronavirus pandemic outbreak|COVID-19]] - there is no clear evidence that sporadic ME/CFS cases are contagious.<ref name="pediatricprimer">{{Cite journal | last = Rowe | first = Katherine S. | last2 = Vallings | first2 = Rosamund | last3 = Stewart | first3 = Julian M. | last4 = Speight | first4 = Nigel | last5 = Schwartz | first5 = Malcolm S. | last6 = Medow | first6 = Marvin S. | last7 = Gurwitt | first7 = Alan | last8 = Friedman | first8 = Kenneth J. | last9 = Underhill | first9 = Rosemary A. | date = 2017 | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer |url = https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5|doi=10.3389/fped.2017.00121|issn=2296-2360}}</ref>

Families, partners, and friends do not report contracting ME/CFS from someone with the disease nor do patients report passing it on to others.<ref>{{Cite web | url = http://forums.prohealth.com/forums/index.php?threads/is-cfs-contagious.189664/ | title = Is CFS contagious? |website = ProHealth Forums|access-date=2019-02-13}}</ref> However, [[Rosemary Underhill|Underhill]] and O'Gorman (2006) researched 219 patients with ME/CFS, and concluded that close household contact and genetics were both risk factors for CFS, finding 3.2% of spouses/partners of those with CFS also had the illness.<ref name="UnderhillInfectious">{{Cite journal | last = Underhill | first = Rosemary A. | last2 = O'Gorman | first2 = Ruth | date = 2006-01-01 | title = Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients | url = https://doi.org/10.1300/J092v13n01_02|journal=Journal of Chronic Fatigue Syndrome|volume=13|issue=1|pages=3–13|doi=10.1300/J092v13n01_02|issn=1057-3321}}</ref> This was a higher prevalence than all genetic relatives except children of patients. Because ME/CFS can run in families, a [[Genetics of chronic fatigue syndrome|genetic link]] is a line of research recommended by the CDC.<ref name="causes" /><br />

[[Michael Sikora]] and collaborators at the [[Open Medicine Foundation]] hope that their research on the role of [[T cell]]s and immune-related [[Genetics of chronic fatigue syndrome|genes]] will help address "whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system".<ref name="omf-funded">{{Cite web | url = https://www.omf.ngo/2018/06/04/omf-funded-research/ | title = OMF funded research | date = Jun 4, 2018 | website = [[Open Medicine Foundation]]}}</ref>

====Blood donation and organ transplant====
A [[Blood donation|tissue and blood donation]] ban is in force for ME/CFS in the [[United Kingdom]] (even if recovered),<ref name="BloodUK">{{Cite web | url = https://my.blood.co.uk/KnowledgeBase | title = Knowledgebase|website=My Donor Record - Health, Eligibility & Travel | last = | first = | authorlink = |archive-url=|archive-date=|url-status=|access-date=2021-10-08}}</ref> [[Australia]],<ref name="donate">{{Cite web|url = https://www.donateblood.com.au/faq/chronic-fatigue-syndrome |title=Chronic fatigue syndrome – I have/had chronic fatigue syndrome. Can I donate?|access-date=2022-05-25|website = Australian Red Cross}}</ref> [[New Zealand]],<ref name="NZBlood">{{Cite web |url = https://www.nzblood.co.nz/become-a-donor/am-i-eligible/detailed-eligibility-criteria/ | title = Detailed Eligibility Criteria|access-date=2022-05-25 | date = |website=NZ Blood|quote=}}</ref> most of [[Canada]],<ref name="Wilson2014">{{Cite journal | title = The Use of Preliminary Scientific Evidence in Public Health: A Case Study of XMRV | date = 2014-04-08 | url = https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1001623|journal=PLOS Medicine|volume=11|issue=4| pages = e1001623 | last = Wilson | first = Kumanan | last2 = Atkinson | first2 = Katherine | last3 = Keelan | first3 = Jennifer|language=en|doi=10.1371/journal.pmed.1001623|pmc=PMC3979645|pmid=24714396|issn=1549-1676}}</ref> and for a time also in the [[United States]],<ref name="post">{{Cite web | url = http://voices.washingtonpost.com/checkup/2010/12/red_cross_bars_chronic_fatique.html | title = Red Cross bars chronic fatigue patients from donating blood | last = Stein | first = Rob | authorlink = | date = Dec 3, 2010 | website = Washington Post|archive-url=|archive-date=|access-date=2022-05-25}}</ref> initially due to the research on [[Xenotropic murine leukemia virus-related virus|XMRV]] as being the likely infectious trigger of CFS<ref>{{Cite web | url = https://www.meassociation.org.uk/2010/04/xmrv-testing-in-the-uk/ | title = XMRV testing in the UK | last = | first = | author-link =| date = 2010 | website = [[ME Association]]|language=en-US|archive-url=|archive-date=|access-date=2019-02-13}}</ref> and showing that patients carried the virus.<ref name="post" /> Two papers on XMRV were retracted as the result was caused by laboratory contamination,<ref name="Redaction2012">{{Cite journal | date = Dec 2012 | title = Redaction, retraction and reaction | url = https://www.nature.com/articles/nrmicro2928|journal=Nature Reviews Microbiology|language=en|volume=10|issue=12 | pages = 799|doi=10.1038/nrmicro2928|issn=1740-1534}}</ref><ref name="transfusion">{{Cite web | url = https://transfusionnews.com/2012/10/05/multicenter-study-finds-no-correlation-between-chronic-fatigue-syndrome-and-xmrv/ | title = Multicenter Study Finds No Correlation between Chronic Fatigue Syndrome and XMRV|website=transfusionnews.com|access-date=2019-02-13}}</ref> but many blood donation bans remain.<ref name="Wilson2014"/>

The US American Red Cross no longer has statements barring transfusions or transplants for CFS,<ref name="redcross">{{Cite web | url = https://www.redcrossblood.org/faq.html#eligibility-health|access-date=2019-02-13 | title = Frequently Asked Questions | date = | last = | first = | authorlink = |archive-url=|archive-date=|website=American Red Cross|quote=Your search for "Chronic fatigue syndrome" returned no results.}}</ref> but patients are expected to be in "good health" which would exclude most.<ref name="redcross"/> The American Association of Blood Banks advises to either accept or defer ME/CFS donors based on "clinical judgment of the donor's health status".<ref name="AABBOct2012">{{Cite web | last = American Association of Blood Banks | url = https://www.aabb.org/docs/default-source/default-document-library/regulatory/eid/xmrvfactsheet.pdf?sfvrsn=cd162fa3_2 | date = October 2012 | title = Xenotropic Murine Leukemia Virus-Related Virus (XMRV) and other Polytropic Murine Leukemia Viruses (pMLV)|pages = 3 |quote=An updated AABB Association Bulletin #12-05 (November 2012) states that individual collectors of blood and cellular therapy products should accept or defer donors with a history of CFS based on their clinical judgment of the donor's health status.|access-date=2022-05-25}}</ref> Patient charities discourage ME/CFS patients from donating blood,<ref name="MassBlood2015">{{Cite web | url = https://www.massmecfs.org/research/recent-research/19-xmrv/237-aabbs-recommendation-on-cfidsme-and-blood-donation | title = AABB's recommendation on ME/CFS and blood donation | date = Nov 25, 2015 |website=[[Massachusetts ME/CFS & FM Association]]|access-date=2022-05-25}}</ref>

== Mini-Docs ==
<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Jen Brea/TED (2016)">https://www.youtube.com/watch?v=Fb3yp4uJhq0</embedvideo>
[[What happens when you have a disease doctors can't diagnose - TED Talk (2016)|''What happens when you have a disease doctors can't diagnose'']] By [[Jennifer Brea|Jen Brea]]/TED

Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her illness, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.<ref>{{Cite web | url = https://www.youtube.com/watch?v=Fb3yp4uJhq0 | title = What happens when you have a disease doctors can't diagnose | date = Jan 17, 2017|access-date=|website=YouTube | last = Brea | first=Jennifer | authorlink=Jennifer Brea|archive-url=|archive-date=|publisher=TED}}</ref><ref>{{Cite web | url = https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose | title = What happens when you have a disease doctors can't diagnose | date = Jun 2016|access-date=|website=TED | last = Brea | first=Jennifer | authorlink=Jennifer Brea|archive-url=|archive-date=}}</ref>

<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Veronica Weber/Palo Alto Online (2015)">https://www.youtube.com/watch?v=9_HwOUiImvw</embedvideo>

[[Invisible Illness - Stories of Chronic Fatigue Syndrome|''Invisible Illness - Stories of Chronic Fatigue Syndrome'']] By Veronica Weber/Palo Alto Online

This mini documentary reveals 3 stories of people who have been impacted by [[Chronic Fatigue Syndrome]] - a little known disease that affects roughly 836,000-2.5 million people in the U.S. and receives little research funding. They share emotions of treating loved ones with the disease, their frustrations of being ignored by members of society and the healthcare industry and express hopes of treatment and research. Video by Veronica Weber/Palo Alto Online<ref>{{Cite web | url = https://www.youtube.com/watch?v=9_HwOUiImvw | title = Invisible Illness - Stories of Chronic Fatigue Syndrome | date = Jul 10, 2015 |access-date=|website=YouTube | last = Weber | first = Veronica | authorlink=|archive-url=|archive-date=|publisher=Palo Alto Online}}</ref>

<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Dr. David Kaufman/Unrest (2018)">https://www.youtube.com/watch?v=RC9TjgE_PlU</embedvideo>

''Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome'' By Dr. [[David Kaufman]]/[[Unrest|''Unrest'']]

This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is '''part of the Unrest Continuing Education module''', made available through the American Medical Women’s Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch [[Unrest]] online for free and receive Continuing Education credit.<ref>{{Cite web | url = https://www.youtube.com/watch?v=RC9TjgE_PlU | title = Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | date = Oct 16, 2018|access-date=|website=YouTube | last = | first = | authorlink = David Kaufman|archive-url=|archive-date=|publisher=Unrest Film}}</ref>

==Epidemiology ==
In the [[United States]], 836,000 - 2.5 million people suffer from ME/CFS. "The total economic costs of ME/CFS are estimated at $17 to $24 billion annually."<ref name="clinicians" /> Some CFS patients can work with [https://www.dol.gov/general/topic/disability/jobaccommodations job accommodations] but 1/3 to 1/2 become unemployed and [[Disability|many rely on SSDI/SSI]].<ref>[https://www.masscfids.org/job-accommodations Job Accommodations - MASS CFIDS]</ref>
*[[Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome|Epidemiology]]
:All races and cultures are afflicted with ME/CFS.<ref>[http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91 Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care - July 2011]</ref><ref name="epidemiology">{{Cite web | title = Epidemiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/epidemiology.html|website=[[Centers for Disease Control and Prevention]] | date = 2018-11-08|access-date=2019-01-29|language=en-us}}</ref> Children and adolescents are also diagnosed.<ref>{{Cite web | title = ME/CFS in Children {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/me-cfs-children/index.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-01-29|language=en-us}}</ref><ref>{{Cite web | title = Pediatric ME/CFS Home Page | url = https://www.massmecfs.org/pediatric-me-cfs-home-page|website=massmecfs.org|access-date=2019-01-29}}</ref>
*[[Female predominant diseases]]
:Like many [[Autoimmune disease|autoimmune]] and [[Neuro-immune disease|neuro-immune]] diseases where mostly women are afflicted,<ref>[http://www.rightdiagnosis.com/artic/fact_sheet_autoimmune_disease_in_women_nwhic.htm Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015]</ref> the ME/CFS female/male patient ratio per Capelli et al. is 6:1<ref>{{Cite journal | title = Chronic fatigue syndrome/myalgic encephalomyelitis: an update | url = https://www.ncbi.nlm.nih.gov/pubmed/21244747|journal=International Journal of Immunopathology and Pharmacology | date = Oct 2010|issn=0394-6320|pmid=21244747 | pages = 981–989|volume=23|issue=4|doi=10.1177/039463201002300402 | first = E. | last=Capelli | first2 = R. | last2 = Zola | first3 = L. | last3 = Lorusso | first4 = L. | last4 = Venturini | first5 = F. | last5 = Sardi | first6 = G. | last6 = Ricevuti}}</ref> while the CDC states 4:1.<ref name="epidemiology"/>
*[[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|Pediatric]]
:Pediatric ME/CFS is defined by the CDC<ref>{{Cite web | url = https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-healthcare-professional.html | title = Pediatric ME/CFS: Fact Sheet for Healthcare Professionals {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2017-10-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-13}}</ref> and the [[National Academy of Medicine]] (NAM)<ref name="IOM2015"/>{{Rp|181}} although it is usually diagnosed in adults.<ref name="whatis"/> "Children below the age of 8 or 9 do not have the symptom pattern of adolescents past puberty. If the onset of the disease occurs during adolescence, the most common time of onset, the pattern is similar to that of adults."<ref>{{Cite web | url = https://www.omf.ngo/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ | title = ME/CFS in Children - by David S. Bell, MD | date = 2016-06-25|publisher=[[Open Medicine Foundation]]|access-date=2018-08-11|language=en-US | last = Bell | first = David | authorlink = David Bell}}</ref> The prognosis in adolescents is considered to be better than in adults.<ref name="prognosis">{{Cite web | url = https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/prognosis.html | title = Prognosis {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | date = 2018-11-08 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-31}}</ref><ref>{{Cite journal | last = Rowe | first = Peter C. | last2 = Underhill | first2 = Rosemary A. | last3 = Friedman | first3 = Kenneth J. | last4 = Gurwitt | first4 = Alan | last5 = Medow | first5 = Marvin S. | last6 = Schwartz | first6 = Malcolm S. | last7 = Speight | first7 = Nigel | last8 = Stewart | first8 = Julian M. | last9 = Vallings | first9 = Rosamund | date = 2017 | title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer |url = https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5|doi=10.3389/fped.2017.00121|issn=2296-2360}}</ref> Children are diagnosed with ME/CFS at three months of illness under SEID and CCC and ME is diagnosed immediately under ICC.<ref>{{Cite web | url = https://www.masscfids.org/pediatric-me-cfs-links | title = Pediatric ME/CFS links|website=[[Massachusetts ME/CFS & FM Association]]|language=en-GB|access-date=2018-08-11}}</ref><ref name="clinicians" /><ref name="Carruthers, 2003" /><ref name="ICC" />
*[[Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome|Prevalence]]
:"Worldwide, there may be as many as 17 – 24 million people with ME/CFS."<ref>{{Cite web | url = https://ammes.org/how-many-people-have-mecfs/ | title = How Many People Have ME/CFS?|website = [[American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society]]|language=en-US|access-date=2019-01-31}}</ref> 25% of ME/CFS patients are [[Severe and very severe ME|housebound or bedbound]] at some point in their illness.<ref name="keyfacts">{{Cite web | url = https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf | title = Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts | last = | first = | author-link =| date = 2015 | website = nap.edu|archive-url=https://web.archive.org/web/20190327085836/https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf|archive-date=2019-03-27|url-status=dead|access-date=}}</ref><ref name="IOM2015"/>{{Rp|32}} 90% of patients are undiagnosed.<ref name="whatis"/>
*[[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|Prognosis]]
:The prognosis for a patient diagnosed with ME/CFS is considered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning.<ref name="Cairns2005">{{Cite journal | last = Cairns | first = R. | author-link = | last2 = Hotopf | first2 = M. | authorlink2 = Matthew Hotopf | date = Jan 2005 | title = A systematic review describing the prognosis of chronic fatigue syndrome | url = https://www.ncbi.nlm.nih.gov/pubmed/15699087|journal=Occupational Medicine (Oxford, England)|volume=55|issue=1|pages=20–31|doi=10.1093/occmed/kqi013|issn=0962-7480|pmid=15699087|quote=|via=}}</ref> The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients.<ref name="Cairns2005" /><ref name="Joyce1997">{{Cite journal | last= Joyce | first = J. | last2 = Hotopf | first2 = M. | last3 = Wessely | first3 = S. | date = Mar 1997 | title = The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review | url = https://www.ncbi.nlm.nih.gov/pubmed/9093600|journal=QJM: monthly journal of the Association of Physicians|volume=90|issue=3|pages=223–233|issn=1460-2725|pmid=9093600}}</ref>

==ME vs CFS vs CF==

The name myalgic encephalomyelitis (ME) was coined following an [[Epidemic myalgic encephalomyelitis|outbreak]] of an illness at the [[1955 Royal Free Hospital outbreak|Royal Free Hospital]] in the UK, in 1955. The name chronic fatigue syndrome (CFS) was coined by the [[Centers for Disease Control and Prevention]] (CDC) following an [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|outbreak]] of a [[flu-like illness]] at [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]], at Lake Tahoe, in the 1980s. There is disagreement as to whether ME and CFS are the same disease, entirely separate illnesses, or whether ME constitutes a more severe subset of CFS. Adding to the confusion, the diagnostic name given to patients is more often dependent on the country in which they live, than differing characteristics of their illness, as some countries use CFS (eg: US, [[Australia]]), and other countries (particularly in Europe) use ME. At this point in time, there is no clear biological evidence to resolve whether the illnesses are the same or different, and there is unlikely to be a resolution until firm [[diagnostic biomarker|biomarkers]] have been identified. As such, many patients and researchers use the term ME/CFS.<ref name="Klimas20140621video" /> See: [[Definitions of ME and CFS]].

The name Chronic Fatigue Syndrome is itself controversial, as many consider it [[stigma and discrimination|stigmatizing]]. In February 2016, Dr [[Anthony Komaroff]], who was part of the CDC group of clinicians who coined the name Chronic Fatigue Syndrome, said of it:
<blockquote>"I think that was a big mistake because the name, in my opinion, and the opinion of a lot of people, it both trivializes and stigmatizes the illness. It makes it seem unimportant, maybe not even real"<ref name="Komaroff20160217video" /></blockquote>

It is important to distinguish between ME/CFS and chronic fatigue (CF), which is a symptom of many different medical conditions (e.g.: anemia, [[hepatitis]], [[multiple sclerosis]], [[Thyroid disease|hypothyroidism]], [[depression]], ME/CFS). "Chronic fatigue" is not an illness in its own right and it is incorrect and misleading to refer to ME/CFS as "chronic fatigue". While [[fatigue]] is a component of ME/CFS, many consider [[post-exertional malaise]] (PEM) to be the cardinal feature of ME/CFS.<ref name="Carruthers, 2003" /><ref name="IOM2015MECFS" />

==Evidence of a disease==

=== Symptoms ===
[[List of symptoms in ME CFS|Symptom presentation varies enormously]] between individuals. Symptom presentation also varies within individuals, as individuals often report that symptoms change over time (increasing or decreasing) and new symptoms may appear while others disappear.<ref>{{Cite web | title = Symptoms and Diagnosis of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/symptoms-diagnosis/index.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-02-01|language=en-us}}</ref> There are many symptoms which people with ME/CFS experience, though those listed below are the core symptoms found in all patients.

[[File:Cfs woman sketch.jpg|435x435px|thumb|[[Post-exertional malaise]] (PEM) is a [[List of symptoms in ME CFS|''worsening'' of ME/CFS symptoms]] after minimal [[Exertion#Exertion in ME.2FCFS|physical, mental or emotional exertion]]. Worsening symptoms may include [[chronic fatigue]]; [[flu-like symptoms]], [[brain fog]]/[[cognitive dysfunction]], and [[word-finding problems]], [[unrefreshing sleep]], [[headache]]s and [[migraine]]s, [[chronic pain]], [[Myalgia|muscle pain]] and [[muscle fatigability]], [[orthostatic intolerance]], [[neurally mediated hypotension]], or [[Postural orthostatic tachycardia syndrome|POTS]] and more. The [[Delayed onset of post-exertional symptoms|onset of PEM can be delayed 24-72 hours]] and depending on ME/CFS severity can last days, weeks, or even months]]

[[File:Rosa SEID.JPG|400px|thumb|left|Rosa age 25 in 1986 and mildly ill with [[Systemic Exertion Intolerance Disease#Diagnostic criteria|ME/CFS's core symptoms]]. In 2015 the [[SEID]] criteria were released. Rosa read about [[Post-exertional malaise|PEM]] and how it is delayed and makes [[List of symptoms in ME CFS|ME/CFS symptoms]] like [[Chronic fatigue|CF]], [[Orthostatic intolerance|OI]], and [[Cognitive dysfunction|cognition]] worse. Her life since [[Pediatric myalgic encephalomyelitis/chronic fatigue syndrome|age 17]] fell into place as she never connected her worsening symptoms with increased [[Exertion#Exertion in ME.2FCFS|physical or mental activity]] 24-72 hours prior. She believes not understanding PEM made her illness worsen over the years and is now disabled meeting the [[Canadian Consensus Criteria|CCC]] with PEM.]]

[[File:Brian vastag.png|thumb|left|[[Brian Vastag]] is an American and award-winning journalist and an ME/CFS patient that won a disability case against Prudential, proving that PEM is a severe symptom that keeps him from gainful employment]]

[[File:PEM1.JPG|300px|thumb|right|I think [https://twitter.com/hashtag/twofacesofme?f=tweets&vertical=default&src=hash #TwoFacesofME] is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #[[ME/CFS|MEcfs]] research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.<ref>{{Cite web | url = https://twitter.com/JackCroxall/status/1085900441328803840 | title = I think #TwoFacesofME is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #MEcfs research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.pic.twitter.com/hNjK5140kv | last = Croxall | first = Jack | date = 2019-01-17 | website = @JackCroxall|language=en|access-date=2019-01-17}}</ref>]]

[[File:PEM4.JPG|300px|thumb|right|First photo, me in my [[Severe and very severe ME|wheelchair on a rare trip out]]. Second photo, the inevitable crash. Eye half closed, [[Speech difficulties|slurred speech]], [[Dizziness|dizzy]], weak, etc. #TwoFacesofME<ref>{{Cite web | url = https://twitter.com/hopeforMEyet/status/1085909800766980096 | title = First photo, me in my wheelchair on a rare trip out. Second photo, the inevitable crash. Eye half closed, slurred speech, dizzy, weak, etc. #TwoFacesofMEpic.twitter.com/P2OPnnpQvF | last = Karen | date = 2019-01-17 | website = @hopeforMEyet|language=en|access-date=2019-01-17}}</ref>]]

[[File:PEM5.JPG|300px|thumb|right|#TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not [[Severe and very severe ME|severely ill]], and my life is ok, even [so] I wish that one day science will help me & all the #MeCfs sufferers around the globe.<ref>{{Cite web | title = #TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not severely ill, and my life is ok, even do I wish that one day science will help me & all the #MeCfs sufferers around the globe.pic.twitter.com/wmhfHcfP0p | url = https://twitter.com/Authorportrait/status/1085815918846832640 | website = @Authorportrait | date = 2019-01-17|access-date=2019-01-17|language=en | first = Henry | last = Köhler}}</ref>]]

*[[Post-exertional malaise]] (PEM) is the hallmark symptom of ME/CFS. After physical, mental or emotional [[exertion]] (which for some patients can be a shower or making out a to-do list, others grocery shopping, socializing or reading a news article, while some just walking to the mailbox, getting to the doctor or mentally following a T.V. program)<ref name="what-is" /><ref name="symptoms"/><ref name="Cairns2005" /> there is a payback of significant '''worsening''' [[List of symptoms in ME CFS|ME/CFS symptoms]] which can be [[Delayed onset of post-exertional symptoms|delayed for 24-72 hours or more]]<ref name="symptoms"/><ref name="Lindheimer2017">{{Cite journal | last = Lindheimer | first=Jacob B. | last2 = Meyer | first2 = Jacob D. | last3 = Stegner | first3 = Aaron J. | last4 = Dougherty | first4 = Ryan J. | last5 = Van Riper | first5 = Stephanie M. | last6 = Shields | first6 = Morgan | last7 = Reisner | first7 = Amanda | last8 = Shukla | first8 = Sanjay K. | last9 = Light | first9 = Alan R. | date = 2017-04-03 | title = Symptom variability following acute exercise in myalgic encephalomyelitis/chronic fatigue syndrome: a perspective on measuring post-exertion malaise | url = https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1321166|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=5|issue=2 | pages = 69–88|doi=10.1080/21641846.2017.1321166|issn=2164-1846}}</ref><ref name="Yoshiuchi2007">{{Cite journal | last = Yoshiuchi | first = Kazuhiro | last2 = Cook | first2 = Dane B. | last3 = Ohashi | first3 = Kyoko | last4 = Kumano | first4 = Hiroaki | last5 = Kuboki | first5 = Tomifusa | last6 = Yamamoto | first6 = Yoshiharu | last7 = Natelson | first7 = Benjamin H. | date = 2007-12-05 | title = A real-time assessment of the effect of exercise in chronic fatigue syndrome | url = https://www.ncbi.nlm.nih.gov/pubmed/17655887|journal=Physiology & Behavior|volume=92|issue=5 | pages = 963–968|doi=10.1016/j.physbeh.2007.07.001|issn=0031-9384|pmc=2170105|pmid=17655887}}</ref> and can last 24 hours and even days, weeks, or months.<ref name="VanNess2010">{{Cite journal | last = VanNess | first=J. Mark | last2 = Stevens | first2 = Staci R. | last3 = Bateman | first3 = Lucinda | last4 = Stiles | first4 = Travis L. | last5 = Snell | first5 = Christopher R. | date = Feb 2010 | title = Postexertional malaise in women with chronic fatigue syndrome | url = https://www.ncbi.nlm.nih.gov/pubmed/20095909|journal=Journal of Women's Health (2002)|volume=19|issue=2|pages=239–244|doi=10.1089/jwh.2009.1507|issn=1931-843X|pmid=20095909}}</ref><ref>[https://www.fda.gov/downloads/forindustry/userfees/prescriptiondruguserfee/ucm368806.pdf The Voice of the Patient.] A series of reports from the U.S. Food and Drug Administration’s (FDA’s) Patient-Focused Drug Development Initiative. September 2013</ref> The patient will experience even greater fatigue as well as exasperate the [[flu-like symptoms]] and body [[pain]]. Every patient experiences different symptoms and symptom severity from different activities and exertion output according to how sick he or she is with the disease.<ref name="prognosis" /><ref name="what-is" /><ref name="Cairns2005" /> Regarding PEM the [[CFIDS Association of America]] states:
<blockquote>This is a term which describes a symptom in which exercise or exertion can bring on [[malaise]] (illness). In the case of people with ME/CFS, malaise often occurs during a period some 24-72 hours after exertion. For example, in some cases, a short walk can worsen ME/CFS symptoms two days later. This lack of understanding about the delayed onset of symptoms has, in the past, made it harder to test for ME/CFS. Follow up tests, taken less than 24 hours after an initial exercise test, may show that the patient can still perform activities at the same level (before post exertional malaise has a chance to take hold).<ref>[http://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America]</ref></blockquote>
*[[chronic fatigue]]
*[[cognitive dysfunction]]

*[[orthostatic intolerance]] (OI) such as [[postural orthostatic tachycardia syndrome]] (POTS) or [[neurally mediated hypotension]] (NMH)
*[[unrefreshing sleep]]/[[sleep dysfunction|sleep disturbance]] <ref name="DiagnosticAlgorithm" /><ref name="clinicians" />
==== Other possible symptoms ====
*[[chronic pain]]
*[[immune system]]
*<span class="plainlinks">[[:Category:Neurological signs and symptoms|neurological signs and symptoms]]</span> See also: [[neuroinflammation]].
*[[List of symptoms in ME CFS|List of symptoms in ME/CFS]]

=== Comorbids ===
*[[fibromyalgia]] (FMS)
*[[irritable bowel syndrome]] (IBS)
*[[multiple chemical sensitivity]] (MCS)
*[[temporomandibular joint disorder]] (TMJ) <ref>[http://solvecfs.org/what-is-mecfs/ What is ME/CFS? - Solve ME/CFS Initiative]</ref>

=== Government guides on symptoms ===
'''US Government guides on symptoms'''
*[https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf Clinicians Guide] via The [[Institute of Medicine report]] (IOM)
*[https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html CDC - ME/CFS Symptoms]

'''Canada guides on symptoms'''
*[http://linkis.com/org/tUheh Alberta Clinicians Guide]

===Biological abnormalities===
Because there is currently no biomedical test for ME/CFS, many have incorrectly assumed that there are no medical abnormalities found in people with the illness. As a result, ME/CFS symptoms are often considered to be [[Medically unexplained physical symptoms|medically unexplained]], and therefore [[Psychologization|psychological]] in origin. While it is true that the illness is poorly understood, many biological abnormalities have been found in a range of different body systems, particularly in the [[central nervous system]], [[autonomic nervous system]], [[immune system]], and [[Metabolic|energy metabolism]].<ref name="IOM2015MECFS" /> Unfortunately, none have yet proved to be specific enough to ME/CFS as to be useful as a [[Diagnostic biomarker|biomarker]] of the disease, and many were identified in small studies, which need replication. Whilst there have been [[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|many abnormalities identified]] found to be associated with the disease, it cannot yet be determined whether these are a cause or consequence.
* [[Gastrointestinal system]]
* [[Natural killer cell]]

==== Notable studies ====
* [[Cytokine#Notable_studies|Cytokine ("Notable studies")]]
*Immune findings by [[Mady Hornig]] & [[Ian Lipkin]]<ref name="Hornig20150201immune" />
*[[List of enterovirus infection studies]]

*2014, [[Neuroinflammation]] Japanese Neuroinflammation study<ref name="NakatomiY2014" />
*2015, Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology<ref name="stanfordleptin">{{Cite journal | last1 = Stringer | first1 = EA | last2 = Baker | first2 = KS | last3 = Carrol | first3 = IR | last4 = Montoya | first4 = JG | authorlink4 = Jose Montoya | last5 = Chu | first5 = L | authorlink5 = Lily Chu | last6 = Maeker | first6 = HT | last7 = Younger | first7 = JW | authorlink7 = Jarred Younger| title = Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology | journal = J Transl Med.| date = Apr 9, 2013 | pmid = 23570606 | pmc = 3637529 | doi = 10.1186/1479-5876-11-93| url = http://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-11-93 }}</ref> - [https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-11-93 (Full text)]
::Younger's Leptin study
*2014, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome<ref name="Zeineh2014">{{Cite journal | last = Zeineh | first = Michael M. | author-link = Michael Zeineh | last2 = Kang | first2 = James | last3 = Atlas | first3 = Scott W. | last4 = Raman | first4 = Mira M. | last5 = Reiss | first5 = Allan L. | last6 = Norris | first6 = Jane L. | last7 = Valencia | first7 = Ian | last8 = Montoya | first8 = Jose G. | date = 2014-10-29 | title = Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome | url = https://pubs.rsna.org/doi/10.1148/radiol.14141079|journal=Radiology|volume=274|issue=2 | pages = 517–526|doi=10.1148/radiol.14141079|issn=0033-8419}}</ref>
<blockquote>Bilateral [[white matter]] atrophy is present in CFS. No differences in perfusion were noted. Right hemispheric increased FA may reflect degeneration of crossing fibers or strengthening of short-range fibers. Right anterior arcuate FA may serve as a [[Diagnostic biomarker|biomarker]] for CFS.</blockquote>
:*2014, [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)|Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder By David Tuller - New York Times: Well]]
[[File:ME-CFS Brain Images.jpg|500px|thumb|center|Top scans: Healthy control patient; Bottom scans: chronic fatigue syndrome (CFS) patient. Image By: [[Michael Zeineh]]]]
*2016, [[Metabolic features of chronic fatigue syndrome]]

*2019, [[Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy (2019) Mueller, et al|Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy]]<ref name="Mueller2019">{{Cite journal | url = https://link.springer.com/epdf/10.1007/s11682-018-0029-4 | title = Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy | last = Mueller | first = Christina | authorlink= | last2 = Lin | first2 = Joanne | authorlink2 = | date = 2019 | journal=Brain Imaging and Behavior|volume=14|issue= | pages = 562–572|doi=10.1007/s11682-018-0029-4|archive-url=|archive-date=|access-date=2019-01-17 | last3 = Sheriff | first3 =Sulaiman | authorlink3 = | last4 = Maudsley | first4 = Andrew | authorlink4 = | last5 = Younger | first5 = Jarred | authorlink5 = Jarred Younger}}</ref>
**2018, [https://www.youtube.com/watch?v=rxdzaWD5wfU ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study]<ref>{{Cite web | url = https://www.youtube.com/watch?v=rxdzaWD5wfU | title = ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study | date = Dec 14, 2018|access-date=|website=YouTube | last = Younger | first=Jarred | authorlink=Jarred Younger|archive-url=|archive-date=|publisher=SolveCFS}}</ref> (TALK)

===Causes & triggers===

*Outbreaks - see [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|List of outbreaks]]
*Possible infectious triggers: [[Enterovirus]]es, [[Epstein-Barr virus]]<ref name="Hickie2006" />, [[Q fever]]<ref name="Hickie2006" />, [[Ross River virus]]<ref name="Hickie2006" />, [[mononucleosis]]<ref name="Jason, Katz, 2017" />, ([[Ebola virus disease|Ebola]]?)<ref name="Hickie2006" />
*Non-viral triggers - [[trauma]], chemical

== Tests ==
* [[Natural killer cell]] (NKC) Blood Test
* Sleep study for [[sleep apnea]], [[Restless legs syndrome|restless leg syndrome]], and other sleep disturbances.
* [[Tilt table test]] for [[Orthostatic intolerance|OI]] or [[Postural orthostatic tachycardia syndrome|POTS]].

==Treatments==
There are currently no [[U.S. Food and Drug Administration|Food and Drug Administration]] (FDA) approved treatments for ME/CFS. Treatments consist mostly of symptom management, rather than treatment of the underlying cause of the disease, which is not yet understood.<ref name="Primer2014" /> There are many [[:Category:Potential_treatments|potential treatments]], though their evidence-base is limited, as most research into treatments has gone into psychological approaches to treatment.

=== Drugs ===
[[File:Ampligen.jpg|200px|thumb|right|Ampligen]]
Two treatments that have garnered much attention are [[Ampligen]], produced by [[AIM ImmunoTech]] (formerly Hemispherx Biopharma), and [[Rituximab]]. Many people have reported improvements from Ampligen, and a few recovered but relapsed when they stopped taking it.<ref name="TownCFS">{{Cite web | url = https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue | title = A Town for People with Chronic Fatigue Syndrome|website=New Yorker | date = Sep 3, 2019 | first = Mike | last = Mariani|access-date=2022-04-13}}</ref>

Attempts to obtain FDA approval for Ampligen in the US have failed, but it is available to some people on [[compassionate use]].<ref name="experimental">{{Cite web | url = https://ammes.org/experimental-treatments/ | title = Experimental treatments | last = | first = | date = |website=[[American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society]]|language=en-US|archive-url=|archive-date=|access-date=2021-03-18}}</ref> [[Argentina]] approved the use of Ampligen for [[Severe and very severe ME|severe ME/CFS]] in 2016.<ref>{{Cite news | url = http://www.globenewswire.com/news-release/2016/08/23/866212/0/en/Hemispherx-Biopharma-Announces-Major-Breakthrough-Approval-for-Commercial-Sale-of-Rintatolimod-U-S-Tradename-Ampligen-to-Treat-Severe-Cases-of-Myalgic-Encephalomyelitis-Chronic-Fat.html | title = Hemispherx Biopharma Announces Major Breakthrough: Approval for Commercial Sale of Rintatolimod (U.S. Tradename: Ampligen®) to Treat Severe Cases of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the Argentine Republic | last = Hemispherx Biopharma, Inc. | date = Aug 23, 2016|work=GlobeNewswire News Room|access-date=2018-08-13|archive-url=|archive-date=|language=en-US}}</ref><ref>{{Cite news | url = http://cdn2.hubspot.net/hubfs/150154/docs/Hemispherx-Executive-Informational-Overview-11-27-16.pdf | title = Hemispherx Biopharma, Inc. Executive Informational Overview | last = | first = | date = Nov 27, 2016|work=Crystal Research Associates|access-date=|archive-url=|archive-date=|format=PDF}}</ref> Also in 2016, it was made available on a limited basis in Europe.<ref>{{Cite web | url = https://www.bizjournals.com/philadelphia/news/2016/07/25/hemispherx-ships-ampligen-for-european-chronic.html | title = Hemispherx ships Ampligen for European chronic fatigue syndrome program | last = George | first = John | date = Jul 25, 2016 | website = bizjournals.com|archive-url=|archive-date=|access-date=2018-08-13}}</ref> In July 2018, AIM ImmunoTech announced the expansion of its US [[compassionate use]] program, '''AMP-511''', to new ME/CFS patients for the first time in over a year.<ref>[http://www.4-traders.com/HEMISPHERX-BIOPHARMA-INC-31148494/news/Hemispherx-BioPharma-Opens-FDA-Approved-Reimbursement-Based-Expanded-Access-Treatment-Program-for-26862569/ Hemispherx BioPharma : Opens FDA-Approved Reimbursement Based Expanded Access Treatment Program for ME/CFS to New Enrollees - 4 Traders]</ref><ref>{{Cite web | url = https://finance.yahoo.com/news/hemispherx-biopharma-inc-announces-advancement-133000883.html | title = Hemispherx Biopharma Inc. Announces Advancement in Expanded Access Program for Ampligen in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | last = | first = | author-link =| date = Jan 2, 2019|website=finance.yahoo.com|publisher=GlobeNewswire|language=en-US|archive-url=|archive-date=|access-date=2019-02-10}}</ref>

[[Rituximab]], a lymphoma drug, had shown promising results in initial trials in Norway,<ref>{{Cite journal | last = Fluge | first = Øystein | authorlink = Øystein Fluge | last2 = Risa | first2 = Kristin | authorlink2 = | last3 = Lunde | first3 = Sigrid | author-link3 = | last4 = Alme | first4 = Kine | authorlink4 = | last5 = Rekeland | first5 = Ingrid Gurvin | authorlink5 = | last6 = Sapkota | first6 = Dipak | authorlink6 = | last7 = Kristoffersen | first7 = Einar Kleboe | last8 = Sørland | first8 = Kari | last9 = Bruland | first9 = Ove | date = 2015-07-01 | editor-last = van der Feltz-Cornelis|editor-first = Christina | title = B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment | url = http://dx.plos.org/10.1371/journal.pone.0129898|journal=PLOS ONE|language=en|volume=10|issue=7| pages = e0129898|doi=10.1371/journal.pone.0129898|issn=1932-6203|pmc=4488509|pmid=26132314|access-date=|quote=|via=}}</ref> and there were groups crowdsourcing funding for further trials in other countries. In 2017, Drs. [[Øystein Fluge]] and [[Olav Mella]] announced that their Rituximab trial had failed. They stated that they would focus their efforts on attempting to identify a subgroup of ME/CFS patients with an immune profile that would be responsive to Rituximab.<ref>{{Cite web | url = https://www.simmaronresearch.com/blog/2017/11/norwegian-rituximab-chronic-fatigue-syndrome-mecfs-trial-fails | title = Norwegian Rituximab Chronic Fatigue Syndrome (ME/CFS) Trial Fails|website=Simmaron Research|language=en-US|access-date=2021-11-21}}</ref> A phase III trial published in 2019 showed Rituximab does not improve ME/CFS.<ref name="phase3-2019">{{Cite journal | last = Fluge | first = Øystein | last2 = Rekeland | first2 = Ingrid G. | last3 = Lien | first3 = Katarina | last4 = Thürmer | first4 = Hanne | last5 = Borchgrevink | first5 = Petter C. | last6 = Schäfer | first6 = Christoph | last7 = Sørland | first7 = Kari | last8 = Aßmus | first8 = Jörg | last9 = Ktoridou-Valen | first9 = Irini | date = 2019-04-02 | title = B-Lymphocyte Depletion in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Randomized, Double-Blind, Placebo-Controlled Trial | url = https://www.ncbi.nlm.nih.gov/pubmed/30934066|journal=Annals of Internal Medicine|doi=10.7326/M18-1451|issn=1539-3704|pmid=30934066}}</ref><br>

[[Jarred Younger]] announced in March 2016 that he will be undertaking a trial of [[low dose naltrexone]] (LDN) in ME/CFS.<ref name="younger-research">{{Cite web | last = Younger | first=Jarred | authorlink = Jarred Younger | title = Research. Neuroinflammation Pain and Fatigue Laboratory|access-date= Nov 21, 2021 | url = https://sites.uab.edu/younger/research/}}</ref>

=== Treating other conditions ===
Different forms of [[Orthostatic intolerance|OI]] are treated with beta-blockers (Metopropol), [[Fludrocortisone]] (Florinef), and [[Mestinon|Pyridostigmine]].<ref name="Carruthers, 2003" /> When treating other diseases, illnesses, and conditions, and ME/CFS comorbidities or overlapping conditions such as sleep difficulties, cognitive problems, pain, and other symptoms it is important to remember that patients are [[Medicine sensitivities|sensitive to medications]].<ref name="monitor">{{Cite web | title = Monitoring the Use of All Medicines and Supplements {{!}} Clinical Care of Patients {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | url = https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/monitoring-medication.html|website=[[Centers for Disease Control and Prevention]] | date = 2018-11-08|access-date=2019-01-27|language=en-us}}</ref> The CDC advice to health care practitioners is to be aware that because all drugs can cause side effects, ME/CFS patient symptoms can worsen. "This is particularly true of any medication that acts on the [[central nervous system]], such as sedating medications: therapeutic benefits can often be achieved at lower-than-standard doses. Patients with ME/CFS might tolerate or need only a fraction of the usual recommended doses for medications. After initial management with lower dosing, one or more gradual increases may be considered as necessary and as tolerated by the patient."<ref name="prognosis" /> For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen OI.<ref name="prognosis" />
===Exercise as treatment===
[[File:J Brea TED.JPG|200px|thumb|right|[[Jen Brea|Jennifer Brea]] is an [[United States|American]] who was studying at Harvard; while on a trip to [[Kenya]] she became very ill with what would eventually be diagnosed as [[ME/CFS]]. Brea began experiencing [[Nervous system|neurological]] problems. Her neurologist diagnosed her with "conversion disorder" ([[hysteria]]). When walking home from his office, she collapsed. [[Severe and very severe ME|Jen then needed to use a wheelchair]] keeping her legs up due to [[Postural orthostatic tachycardia syndrome|POTS]] as her blood pooled into her legs]].
Previously, two common treatment recommendations for ME/CFS were [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT). These treatments are based on disproven the hypothesis that the disease might have begun with a viral infection but has been perpetuated by [[deconditioning]] from lack of activity, and [[illness beliefs|fear and avoidance]] of activity. GET and CBT are aimed at addressing these hypothesized causes by challenging the proposed unhelpful thoughts that result in avoidance of activity and reconditioning through a gradual increase in exercise. These treatments are controversial and are at odds with much of the research literature, which suggests that exercise is harmful to people with ME/CFS. A large patient survey of treatment responses found that 74% of people who had tried GET, reported that their symptoms subsequently worsened,<ref name="MEASSUK20150529survey" /> which is consistent with other patient surveys and many research findings.<ref name="Phoenix20160222Norway2012" /><ref name="OxfordBrookesSurvey">{{Cite web|url = https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf| title = Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT | last = Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS)|location=Oxford Brookes University | date = Feb 27, 2019}}</ref>

The [[PACE trial]], published in 2011, is the largest GET trial ever conducted. It has received much publicity as a result of its recovery rate claims, though it has come under strong criticism from within both the scientific and patient community for significant flaws in its design, and for overstating (and in some cases misrepresenting) outcomes in both the initial trial, and follow-up studies.<ref>{{Cite journal | last = Coyne | first = James Charles | last2 = Laws | first2 = Keith R | date = 2016 | title=Results of the PACE follow-up study are uninterpretable | url = http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext|journal=The Lancet Psychiatry|language=English|volume=3|issue=2| pages = e6–e7|doi=10.1016/S2215-0366(15)00551-9|issn=2215-0366|via=}}</ref> From 2015 to present day, the study was the subject of a series of investigative pieces that were highly critical of the trial by journalist Dr. [[David Tuller]]<ref name="viroblogMECFS" />, science writer [[Julie Rehmeyer]], patient advocate [[Tom Kindlon]], Dr. [[Keith Geraghty]]<ref name="Geraghty, 2017">{{Cite journal | last1 = Geraghty | first1 = Keith | authorlink1 = Keith Geraghty| title = Further Commentary on the PACE Trial: Biased Methods and Unreliable Outcomes| journal = Journal of Health Psychology | volume = | issue = | page = | date = May 2017 | doi = 10.1177/1359105317714486}}</ref>, psychologist [[Carolyn Wilshire]]<ref name="Wilshire C, et al, 2017">{{Cite journal | last1 = Wilshire | first1 = C | authorlink1 = Carolyn Wilshire | last2 = Kindlon | first2 = T | authorlink2 = Tom Kindlon | last3 = McGrath | first3 = S | authorlink3 = Simon McGrath | title = PACE trial claims of recovery are not justified by the data: a rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White | journal = Fatigue: Biomedicine, Health & Behavior | volume = 5 | issue = 1 | page = 62-67 | date = 2017 | doi = 10.1080/21641846.2017.1259724}}</ref> and others. A petition signed by almost 12,000 ME/CFS patients and allies,<ref name="MEACTIONpacepetition" /> and an open letter signed by 42 ME/CFS experts from around the world,<ref name="openletrLANCET2">{{Cite web | last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis | last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards | last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason | last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin | last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello | last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold | last7 = Ablashi | first7 = Dharam V | authorlink7 = Dharam Ablashi | last8 = Baraniuk | first8 = James N | authorlink8 = James Baraniuk | last9 = Barcellos | first9 = Lisa F | authorlink9 = Lisa Barcellos | last10 = Bateman | first10 = Lucinda | authorlink10 = Lucinda Bateman | last11 = Bell | first11 = David S | authorlink11 = David Bell | last12 = Bested | first12 = Alison C | authorlink12= Alison Bested | last13 = Broderick | first13 = Gordon | authorlink13 = Gordon Broderick | last14 = Chia | first14 = John | authorlink14 = John Chia | last15 = Chu | first15 = Lily | authorlink15 = Lily Chu | last16 = Enlander | first16 = Derek | authorlink16 = Derek Enlander | last17 = Fletcher | first17 = Mary Ann | authorlink17 = Mary Ann Fletcher | last18 = Friedman | first18 = Kenneth | authorlink18 = Kenneth Friedman | last19 = Kaufman | first19 = David L | authorlink19 = David Kaufman | last20 = Klimas | first20 = Nancy | authorlink20 = Nancy Klimas | last21 = Lapp | first21 = Charles W | authorlink21 = Charles Lapp | last22 = Levine | first22 = Susan | authorlink22 = Susan Levine | last23 = Light | first23 = Alan R | authorlink23 = Alan Light | last24 = Marshall-Gradisnik | first24 = Sonya | authorlink24 = Sonya Marshall-Gradisnik | last25 = Medveczky | first25 = Peter G | authorlink25= Peter Medveczky | last26 = Nahle | first26 = Zaher | authorlink26 = Zaher Nahle | last27 = Oleske | first27 = James M | authorlink27= James Oleske | last28 = Podell | first28 = Richard N | authorlink28= Richard Podell | last29 = Shepherd | first29 = Charles | authorlink29= Charles Shepherd | last30 = Snell | first30 = Christopher R | authorlink30 = Christopher Snell | last31 = Speight | first31 = Nigel | authorlink31= Nigel Speight | last32 = Staines | first32 = Donald | authorlink32= Donald Staines | last33 = Stark | first33 = Philip B | authorlink33= Philip Stark | last34 = Stein | first34 = Eleanor | authorlink34= Eleanor Stein | last35 = Swartzberg | first35 = John | authorlink35= John Swartzberg | last36 = Tompkins | first36 = Ronald G | authorlink36= Ronald Tompkins | last37 = Underhill | first37 = Rosemary | authorlink37= Rosemary Underhill | last38 = Vallings | first38 = Rosamund | authorlink38= Rosamund Vallings | last39 = VanElzakker | first39 = Michael | authorlink39= Michael VanElzakker | last40 = Weir | first40 = William | authorlink40= William Weir | last41 = Zinn | first41 = Marcie L | authorlink41= Marcie Zinn | last42 = Zinn | first42 = Mark A | authorlink42= Mark Zinn | title = An open letter to the Lancet - again | date = Feb 10, 2016
| website = Virology Blog| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/ }}</ref> were sent to The Lancet, both calling for the data to be reanalysed. Twenty-four ME/CFS organizations from 14 different countries have written to Queen Mary University London requesting that the trial data be released for reanalysis.<ref name="MEACTION20160313openletr" /> To date, the authors of the trial and editor of The Lancet have refused such requests. Despite such criticism, the PACE trial continues to influence both government and the medical profession's approach to the treatment of ME/CFS in many countries.

One of the reasons that exercise may be harmful to people with ME/CFS, is the presence of [[post-exertional malaise]] (PEM), which is an exacerbation of symptoms following physical, mental or even emotional [[exertion]]. Studies have revealed immunological, muscular, [[Nervous system|neurological]], [[Autonomic nervous system|autonomic]] and [[Cardiovascular system|cardiovascular]] abnormalities in response to exercise in people with ME/CFS. As these results are not also found in healthy sedentary controls, the adverse effects of exercise cannot be said to be due to deconditioning.<ref name="TwiskF2015">{{Cite journal | last1 = Twisk | first1 = Frank NM | authorlink1 = Frank Twisk | last2 = Geraghty | first2 = Keith J | authorlink2 = Keith Geraghty | title = Deviant Cellular and Physiological Responses to Exercise in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome| journal = Jacobs Journal of Physiology | volume = 1 | issue =2 | pages = 007 | date = Jul 11, 2015 | url = http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf}}</ref>{{citation needed|reason=VanNess2010 / Workwell Foundation studies need to be cited here.}}{{citation needed|reason=The Lights epigenetic changes post-exercise study needs to be cited here.}}

People with ME/CFS should approach [[exercise]] with caution, as there is much evidence of potential for harm.<ref name="OxfordBrookesSurvey"/><ref name="ICC2011primer"/>

[[Anaerobic threshold]], use of heart rate monitors for activity and [[pacing]]. Analeptic, not aerobic. [[Energy Envelope Theory|Energy envelope]]/pacing - people do better if stay within their envelope, than push to increase activity

====Graded exercise therapy & Cognitive behavioral therapy ====
[[File:Emma Shorter.JPG|400px|thumb|right|[[Emma Shorter]], is a citizen of [[Scotland]]. Here, she gives testimony before Parliament's Petitions Committee on [[graded exercise therapy|GET]] and how it put her in a wheelchair]].
GET and CBT have been recently abandoned in the [[United Kingdom|UK]], [[Ireland]] and many parts of Europe by ME Clinics.<ref name="niceng206">{{Cite web | url = https://www.nice.org.uk/guidance/ng206 | title = Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline. | last=NICE Guideline Development Group | first = | authorlink = |publisher=[[National Institute for Health and Care Excellence]] | date = 2021-10-29}}</ref> They are highly controversial and not recommended by patients, most patient advocates, and research organizations nor by many doctors or researchers outside of the UK. Based on the flawed [[PACE trial]] which used the flawed [[Oxford criteria]] to diagnose and recruit patients, GET and CBT found its way into treating people with ME/CFS.

[[Exercise]], especially GET, can harm an ME/CFS patient further.<ref name="OxfordBrookesSurvey"/>

*[[Jennifer Brea]] walked home from her Neurologist's office and became [[severe and very severe ME|wheelchair-bound]].
*This is an experience of serious harm due to GET shared [https://twitter.com/TomKindlon/status/846425974052966400 by K. Miles, via Tom Kindlon on Twitter].
*[[Emma Shorter]] was able to walk a few minutes a day until GET put her in a wheelchair.
*[[Maik Speedy|Dr Maik Speedy]] was also seriously injured by GET and has been bedbound since.
*British MP [[Brynmor John]] collapsed outside the House of Commons gym in 1998 and [[Causes of death|died]], as a result of following his doctor's advice to exercise back to health.

==== Claims of recovery and cures ====
Charlatans claim they can cure CFS (per the CDC "there is no cure"<ref name="treatments">{{Cite web | url = https://www.cdc.gov/me-cfs/treatment/index.html | title = Treatment {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | last = | first = | date = 2018-07-03 | website = [[Centers for Disease Control and Prevention]]|language=en-us|archive-url=|archive-date=|access-date=2021-11-22}}</ref>) when in reality they may be able to treat [[chronic fatigue]] (CF). ME/CFS patients experience an ongoing improper immune response and other abnormalities for at least 6 months straight with a reduction in activity with a specific symptom set for at least 50% of the time.<ref name="etiology" /><ref>{{Cite web | url = https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html | title = IOM 2015 Diagnostic Criteria {{!}} Diagnosis {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-07}}</ref><ref>{{Cite web | url = https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/approach-to-diagnosis.html | title = Proposed Approach to ME/CFS Diagnosis in Children and Adults {{!}} Diagnosis {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-12 | website = [[Centers for Disease Control and Prevention]] |language=en-us|access-date=2018-09-07}}</ref>

Additionally, there have been media reports of some athletes―usually amateur athletes,―diagnosed with CFS that recovered after a relatively short period of time with rest, supplementation, and diet changes,<ref name="Inews2018" /><ref name="Times2017" /><ref name="ABC2018" /><ref name="London2019" /> but they may have had [[overtraining syndrome]],<ref name="spence">{{Cite web | last = Spence | first = Vance | authorlink = Vance Spence|website=Irish M.E. Association| title = Snippets {{!}} A presentation by MERGE Chairman Dr Vance Spence on 12 November 2005 at the Oak Tree Court Conference Centre, Coventry, at the invitation of the Warwickshire Network for ME|url = https://www.imet.ie/imet_website/snippets/7th_december_2005_snippets.html|quote=(Mommersteeg et al, 2005) shows that the "burnout" experienced by athletes differs from CFS, and is certainly not ME as described in earlier literature. This is just one example of many media stories - thrown out into the public arena - which have an uncertain meaning in the context of ME/CFS}}</ref> while some people with adrenal failure, [[idiopathic chronic fatigue]] or another fatiguing illness may be erroneously diagnosed with CFS<ref name="ICC"/><ref name="recovery">{{Cite web | url = https://www.researchgate.net/profile/Diane_Cox2/publication/257764167_Severe_Chronic_Fatigue_Syndrome_CFSME_Recovery_is_possible/links/00b49525d3a11018ad000000/Severe-Chronic-Fatigue-Syndrome-CFS-ME-Recovery-is-possible.pdf | title = Severe Chronic Fatigue Syndrome: Recovery is Possible | last = Burley | first = Lucy | authorlink=Lucy Burley | last2 = Cox | first2 = Diane | authorlink2 = Diane Cox | date = Aug 1, 2007|pages=339-344|language=en|doi=10.1177/030802260707000803|archive-url=|archive-date=|url-status=|access-date=2019-02-11 | last3 = Findley | first3 = Leslie|journal=British Journal of Occupational Therapy|volume=70|issue=8 | authorlink3 = Leslie Findley}}</ref><ref name="Anoop2012">{{Cite journal | last = Devasahayam | first = Anoop | author-link = | last2 = Lawn | first2 = Tara | authorlink2 = | last3 = Murphy | first3 = Maurice | authorlink3 = | last4 = White | first4 = Peter D | authorlink4 = Peter White | date = Jan 2012 | title = Alternative Diagnoses to Chronic Fatigue Syndrome in Referrals to a Specialist Service: Service Evaluation Survey | url = https://journals.sagepub.com/doi/epub/10.1258/shorts.2011.011127|journal=JRSM Short Reports|volume=3|issue=1|pages=1–5|doi=10.1258/shorts.2011.011127|issn=2042-5333|pmc=PMC3269106|pmid=22299071|access-date=|quote=Half of all the referred patients to a specialist CFS clinic had alternative medical and psychiatric diagnoses.|via=}}</ref> ME and CFS in professional athletes normally results in very premature retirement.<ref name="Squash">{{Cite news | title = Illness robbed Marshall of crowning glory | first = Sam | last = Murley | date = Apr 10, 2019 | url = https://www.royalgazette.com/sport/article/20190410/illness-robbed-marshall-of-crowning-glory/|publisher =Royal Gazette}}</ref><ref name="Annadale">{{Cite web| title = Annadale Striders Interview - Derek Graham | url = http://annadalestriders.co.uk/derek-graham-interview/|website=Annadale Striders}}</ref><ref name="Shattered">{{Cite book |url = https://books.google.co.uk/books/about/Shattered.html?id=mkbxPAAACAAJ&redir_esc=y | title = Shattered: A Champion's Fight Against a Mystery Illness | first=Peter | last= Marshall | first2 = Nick | last2 = Kehoe | date = 2001|publisher =Mainstream}}</ref><ref name="Olympian">{{Cite news | date = May 4, 2012| title = Linley Frame: Olympian and Chronic Fatigue Syndrome sufferer|url = https://www.abc.net.au/local/audio/2012/05/04/3495770.htm|website =Australian Broadcasting Corporation}}</ref><ref name="FIFA">{{Cite web|url = http://www.fifa.com/womensworldcup/classic-players/player=michelle-akers-usa-1329785.html|archive-url=https://web.archive.org/web/20150610042710/http://www.fifa.com/womensworldcup/classic-players/player=michelle-akers-usa-1329785.html|archive-date = 2015-06-10| title = Michelle Akers USA|website=FIFA}}</ref><ref name="olaf">{{Cite news | url = https://www.welt.de/sport/gallery118782921/Benefizspiel-fuer-den-schwer-kranken-Olaf-Bodden.html | title = Benefizspiel für den schwer kranken Olaf Bodden | last = | first = | date = 2021 | website = Die Welt|archive-url=|archive-date=|url-status=|access-date=2021-11-17}}</ref><ref name="LA">{{Cite news | title = Garton enjoying life after United in LA | first = Andy | last = Mitten | date = Jul 24, 2014 | url = https://www.manchestereveningnews.co.uk/sport/football/football-news/andy-mitten-billy-garton-enjoying-7508558.amp|website =Manchester Evening News}}</ref>

==Severely ill patients==
Considerable variation exists in the severity of the disease. The [[International Consensus Criteria]] lists the following severity levels (it should be noted that even "mild" ME/CFS consists of significant debility):

*Mild = 50% reduction in pre-illness activity levels
*Moderate = mostly housebound
*Severe = mostly bedridden
*Very Severe = totally bedridden, and needing help with basic functions.

At least [[Severe and very severe ME|25% of people with ME/CFS are bedbound or housebound]], often for years or even decades, so are largely an invisible population.<ref name="IOM2015MECFS" /><ref name="DerekPrisk2009" /><ref>[http://iacfsme.org/PDFS/2017JanNewsletter/8-Japan-2014-Patient-Survey.aspx ME/CFS Patient Survey Report: Ministry of Health Survey Reveals Harsh Reality of ME/CFS Patients in Japan - IACFSME - By Mieko Shinohara]</ref> So invisible in fact, that they have rarely been included as part of research because their level of debility precludes them from traveling to laboratories for required testing. The [[Open Medicine Foundation]]'s [[ME/CFS Severely Ill, Big Data Study]] will be the first in-depth study of people with a severe form of ME/CFS. This study has so far produced the groundbreaking paper [[Metabolic features of chronic fatigue syndrome]].
It is estimated that 25% of ME/CFS patients are severely ill and are housebound or bedbound.

Notable patients with severe or very severe ME/CFS include [[Whitney Dafoe]], [[Karina Hansen]], [[Lynn Gilderdale]], [[Laura Hillenbrand]], [[Tom Kindlon]], [[Vanessa Li]], [[Doctor Speedy]], [[Naomi Whittingham]], [[Jamison Hill]] and [[Jessica Taylor-Bearman]].

Though uncommon, there have been [[causes of death|instances of deaths]] which have been attributed to the disease (see [[Sophia Mirza]], [[Merryn Crofts]]). National Statistics report an average of 10 - 12 deaths per year in England and Wales [[Causes of death|partly or fully caused by ME/CFS]], with almost all patients dying being of working age.
<ref name="ONS2018">{{Cite web | url = https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/adhocs/008461mentionsofpostviralfatiguesyndromebenignmyalgicencephalomyelitisdeathsregisteredinenglandandwales2001to2016 | title = Mentions of postviral fatigue syndrome (benign myalgic encephalomyelitis), deaths registered in England and Wales, 2001 to 2016 | website = Office for National Statistics|access-date=2019-03-06}}</ref>

==Patients and psychiatry/psychology==

*Objections and scope
*Mind-body dualism
*[[Psychologization]]
*[[Cognitive behavioral therapy]]
*The [[PACE trial]]. See [http://www.meaction.net/wp-content/uploads/2015/05/MEAction%E2%80%93patient-view-of-the-PACE-Trial-Controversy.pdf Patient view of the PACE Trial controversy]
*[[Ethical issues]]
*[[Patient mental health]]

===Stigmatization===

*Pretty young women slumped on desk
*[[Yuppie Flu]]
*Accusations of laziness/lethargy
*Epidemiological evidence - age, gender, demographic, racial/cultural
*[[Stigma and discrimination]]

===Accusations of harassment===

*No arrests or convictions<ref>{{Cite web | url = http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/ | title = Trial By Error, Continued: A Few Words About “Harassment” | last = Tuller | first = David | authorlink = David Tuller | date = Feb 1, 2016 | website = [[Virology blog]]|archive-url=|archive-date=|access-date=2019-01-21}}</ref>
* Potential harassment and "wild speculations" about threats to researchers were unsuccessful arguments used in [[Queen Mary University of London]]'s failed attempt to deny access to the [[PACE trial]] data at the 2015 tribunal. The tribunal judgement stated that the only evidence of harassment provided was a single heckler in a single seminar.<ref name="FirstTierTribunal2015">{{Cite news | title = First-tier tribunal: Information Rights Appeal EA/2015/0269. | url = https://informationrights.decisions.tribunals.gov.uk//DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF | page = 40 | last = Kennedy | first = Brian | last2 = Stephenson | first2 = Darryl | last3 = Watson | first3 = Nigel|quote=The evidence of <nowiki>[expert witness]</nowiki> Professor Anderson that third parties could not identify participants from the information alone and that, when pressed, he said that the chance of an "activist" being able to discover information that would lead to individual identification was remote, it was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder. The identity of those questioning the research, who had signed an open letter or supported it, was impressive.}}</ref>

*Mistreatment of patients, including forced harmful treatment of children, is not mentioned. E.g., the story of "B", aged 8,<ref name="StoryofB">{{cite web | title = The Story of B - Children with ME. Appropriate ME Treatment Parliament debate | date = Jan 24, 2018 | url = https://www.youtube.com/watch?v=5HzZ4U6yU6o&autoplay=0}}</ref> and [[Ean Proctor]] and others "The Mental Health Movement: Persecution of Patients?"<ref>[http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/The%20Mental%20Health%20Movement%20-%20Persecution%20of%20Patients.pdf The Mental Health Movement: Persecution of Patients?]</ref>

* A pattern of [[intimidation and bullying of PACE trial critics]] has included targeting scientists' employers, professional bodies, politicians including the [[Countess of Mar]], and smear tactics in the national press.

== Working with government to move forward ==

Advocates met with senate staffers the week of March 16, 2016, and discussed research and drug development by the [[NIH]], the [[Centers for Disease Control and Prevention|CDC]] reinstating and increasing funding and education based on [[IOM]] recommendations and the [[HHS]] funding to develop Centers of Excellence.<ref>[http://www.meaction.net/2016/03/16/meaction-meets-with-senate-staffers/ #MEAction meets with Senate staffers]</ref> [[The MEAction Network]] reports on this ongoing process.

====CDC Website updates====
*Jul 3, 2017, the CDC's Chronic Fatigue Syndrome page has been changed to [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (ME/CFS) and GET and CBT recommendations have been removed.<ref>{{Cite web|url = http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ | title = Trial By Error: The CDC Drops CBT/GET - Virology Blog | last = Tuller | first = David | authorlink = David Tuller | date = Jul 10, 2017 | website = [[Virology blog]]}}</ref><ref>[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref>

*Jul 12, 2018, the "Information for Healthcare Providers" tab and its sub-tabs were updated.<ref>[https://www.cdc.gov/me-cfs/healthcare-providers/index.html Information for Healthcare Providers - ME/CFS - CDC]</ref><ref>[https://www.cdc.gov/media/releases/2018/a0712-new-website-me-cfs.html New ME/CFS Web Content for Healthcare Providers - CDC - Jul 12, 2018]</ref>

* Feb 25, 2019, Dr. [[Elizabeth Unger]], Chief of CDC's Chronic Viral Disease Branch (CVDB), that houses the ME/CFS program, in collaboration between ''Medscape'' and the CDC put out brief video and commentary page with links to the CDC's July 12th, 2018 updates for medical professionals: ''[https://www.medscape.com/viewarticle/908622?src=rss Chronic Fatigue Syndrome: It's Real, and We Can Do Better].''<ref>{{Cite web | title = Chronic Fatigue Syndrome: It's Real, and We Can Do Better |url = https://www.medscape.com/viewarticle/908622?src=rss| website = Medscape |access-date=2019-02-25 | date = Feb 25, 2019 | last = Unger | first=Elizabeth | authorlink = Elizabeth Unger | last2 = Medscape | first2 = | authorlink2 = |archive-url=|archive-date=}}</ref>
'''MEAction input'''
*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/ CDC Revises its Information on ME] #[[MEAction]] report on the CDC July 2017 and July 2018 website updates. Recommendations for the CDC's ME/CFS page have been created from patient feedback on the updates as well as asking for further patient input.

==Expert opinions==

===Quotes from ME/CFS experts and patients===
*[[Individual quotes]]
*[http://thoughtsaboutme.com/quotes/ Thoughts About ME - List of Quotes]

===Doctors===
'''UK'''
*[[Jonathan Edwards]]
*[[Charles Shepherd]]

'''US'''
<div style="column-count:4;-moz-column-count:4;-webkit-column-count:4">

*[[Lucinda Bateman]]
*[[Lily Chu]]
*[[David Kaufman]]
*[[Nancy Klimas]]
*[[Anthony Komaroff]]
*[[Susan Levine]]
*[[Jose Montoya]]
*[[Benjamin Natelson]]
*[[Daniel Peterson]]
*[[Alan Pocinki]]
*[[Peter Rowe]]
*[[Ronald Tompkins]]
*[[David Tuller]]

</div>

===Researchers===
'''Australia'''
*[[Neil McGregor]]

'''UK'''
*[[Keith Geraghty]]

'''US'''
<div style="column-count:4;-moz-column-count:4;-webkit-column-count:4">
*[[Ron Davis]]
*[[Gunnar Gottschalk]]
*[[Maureen Hanson]]
*[[Mady Hornig]]
*[[Leonard Jason]]
*[[Betsy Keller]]
*[[Ian Lipkin]]
*[[Staci Stevens]]
*[[Suzanne Vernon]]
*[[Jarred Younger]]

</div>

===Patients===
====Australia====

===== Canada =====
*[[Scott Simpson]]

====Scotland====
*[[Emma Shorter]]

====US====
<div style="column-count:2;">
*[[Jennifer Brea]]
*[[Carol Head]]
*[[Ryan Prior]]
*[[Julie Rehmeyer]]
*[[Jaime Seltzer]]
</div>

====UK====
*[[Adam Lowe]]
*[[Graham McPhee]]
*[[Jessica Taylor-Bearman]]

====Ireland====
*[[Tom Kindlon]]

===Patient groups & charities===

'''[[:Category:Patient groups|Patient groups]]'''
<div style="column-count:3">
*[[:Category:American patient groups|American patient groups]]
*[[:Category:Australian patient groups|Australian patient groups]]
*[[:Category:Belgian patient groups|Belgian patient groups]]
*[[:Category:British patient groups|British patient groups]]
*[[:Category:Canadian patient groups|Canadian patient groups]]
*[[:Category:Dutch patient groups|Dutch patient groups]]
*[[:Category:Irish patient groups|Irish patient groups]]
*[[:Category:Italian patient groups|Italian patient groups]]
*[[:Category:New Zealand patient groups|New Zealand patient groups]]
*[[:Category:Norwegian patient groups|Norwegian patient groups]]
*[[:Category:Scottish patient groups|Scottish patient groups]]
*[[:Category:Swedish patient groups|Swedish patient groups]]
</div>

==Photos==
*[https://phoenixrising.me/stock-photography Stock photographs suitable for ME/CFS articles] - curated by [[Phoenix Rising]]
*[https://forums.phoenixrising.me/threads/the-real-me-a-stock-photography-resource-for-the-media.43734/ Advice on photograph choice]

==History==
*[[Osler's Web|''Osler's Web'']] is a book by [[Hillary Johnson]] on the early history of CFS.
*[[Thirty Years of Disdain|''Thirty Years of Disdain'']] by [[Mary Dimmock]] and Matthew Lazell-Fairman picks up on the ME/CFS history where Osler's Web leaves off.

=== Deaths of ME/CFS patients ===
*[[Causes of death]]
*[[Suicide]]

'''Death certificates with ME or CFS'''
*[[Merryn Crofts]]' death is attributed to ME.
*[[Sophia Mirza]]'s death is attributed to CFS.

In the UK, United States, and Australia there are further reports of loved ones who have died due to ME/CFS.<ref>[https://www.newscientist.com/letter/mg19125620-600-not-sadly-the-first/ Sadly, not the first (Comment Section)]</ref> See Editor's Note<ref>[https://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome/ First official UK death from chronic fatigue syndrome - New Scientist]</ref>

==Other tips and articles for journalists==
*2021, [https://www.theopennotebook.com/2021/01/26/how-to-report-with-accuracy-and-sensitivity-on-contested-illnesses/ How to Report with Accuracy and Sensitivity on Contested Illnesses] - by ME/CFS patient and science writer Julie Rehmeyer, Open Notebook
*Always interview a patient
*Interview more than one researcher (not just from the psychological etiology view)
*Avoid using derogatory, outdated & incorrect term "[[Yuppie Flu]]"
*Never shorten the disease name [[chronic fatigue syndrome]] (CFS) to the symptom [[chronic fatigue]] (CF). [[Chronic fatigue syndrome|CFS]], [[myalgic encephalomyelitis|ME]] or [[ME/CFS]] can be used to save print space.
*Use photographic imagery that represents the reality for patients - serious illness & disability - not well-groomed & slightly tired office workers at their computer or students with a pile of books sleeping at their desk. [[Solve ME/CFS Initiative]]'s [https://www.youtube.com/watch?v=cF2OuYFDriY Times Square Public Awareness Ad] shows the reality of the disease ME/CFS. Using photos of patients whether chronically ill yet functioning or a severely ill patient or stock photos that reflect life with this disease is necessary.
{{See also|Long_COVID#Articles_for_journalists_covering_Long_COVID|Articles for journalists covering Long COVID}}

==Learn more==
'''Key facts'''
*[https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf Key Facts] - Institute of Medicine (2015)

'''Research'''
*[[Institute of Medicine report]] (2015) The CDC based its updated [https://www.cdc.gov/me-cfs/index.html ME/CFS page] on information in this report.
*[[Notable studies]]

'''Films'''
*''[[Forgotten Plague]]'' is a US documentary about [[Ryan Prior]], an afflicted journalist who investigates the disease and its history and why the CDC has left millions sidelined from life; available for [http://www.forgottenplague.com/ streaming and DVD purchase]. (2015)
[[File:Forgotten Plague.jpeg|200px|thumb|center]]
*''[[Unrest]]'' is a US documentary film that aired on PBS's ''Independent Lens'' in 2018 and is available for [https://www.unrest.film/watch/#digital streaming] and [https://www.unrest.film/store/ DVD purchase]. [[Jennifer Brea]], a person with [[myalgic encephalomyelitis|ME]], directs. (2017)
[[File:Unrest.jpg|400px|thumb|center]]

'''ME/CFS organization and researchers material'''
*[https://www.youtube.com/watch?v=hRdn4A2SGic Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education] (The CDC's Dr. [[John Iskander]] interviews Dr. [[Anthony Komaroff]]. Video, 2016)
*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis] (2018) Guide for Caretakers
*[http://youtu.be/c2vIQ92wU9Y ME/CFS Diagnosis and Name with Dr Nancy Klimas (video)]
*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?] By the [[Open Medicine Foundation]]

'''[[Patient mental health]]'''

:Patients that had been deemed as suffering from mental health and not a biological illness:
:*[[Karina Hansen]] is a young [[Denmark|Danish]] woman taken from her family for 3 1/2 years due to [[Per Fink]]'s insistence her ME was due to mental health issues.
:*[[Sophia Mirza]] was taken forcibly from her home to a mental hospital only to be returned shortly after; she then died of ME.
:*[[Ean Proctor]] was taken from his parents as a young boy and he was told his "parents were letting him die." He had become [[paralysis|paralyzed]] and mute and was let go in the deep end of a pool to make him swim and another time put him on a scary theme park ride to scare him into moving.

'''More mental health information'''
*ME/CFS is not [[depression]]. It causes a lack of energy, not a lack of desire.<ref name="Griffith, 2008">{{Cite journal | last1 = Griffith | first1 = J.P. | authorlink1 = | last2 = Zarrouf | first2 = F.A. | authorlink2 = | title = A Systematic Review of Chronic Fatigue Syndrome: Don’t Assume It’s Depression| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2292451/| pmc =2292451| journal = Primary Care Companion to The Journal of Clinical Psychiatry | volume = 10 | issue = 2 | page = 120–128| date = 2008 | pmid = 18458765 | doi = 10.4088/pcc.v10n0206 }}</ref><ref name="Hawk, 2006">{{Cite journal | last1 = Hawk | first1 = C | authorlink1 = | last2 = Jason | first2 = L | authorlink2 = Leonard Jason | last3 = Torres-Harding | first3 = S | authorlink3 = Susan Torres-Harding| title = Differential diagnosis of chronic fatigue syndrome and major depressive disorder | journal = International Journal of Behavioral Medicine | volume = 13 | issue = 3 | page = 244-51 | date = 2006 | pmid = 17078775 | doi = 10.1207/s15327558ijbm1303_8
| url = http://www.healthrising.org/wp-content/uploads/2014/04/Hawk.-Jason.-Differential-Diagnosis-of-Chronic-Fatigue-Syndrome-and-Major-Depressive-Disorder.pdf }}</ref><ref name="myhill">{{Cite web|url = http://drmyhill.co.uk/wiki/CFS_or_depression_-_what_are_the_differences| title = CFS or depression - what are the differences | last = Myhill | first = Sarah | authorlink = Sarah Myhill | website = DrMyhill|access-date = 2021-03-22}}</ref>

==See also==
*[[Primer for the public#Disease_names_and_acronyms_around_the_world|Primer for the public (''Disease names and acronyms around the world'' section)]]

==References==
<references>

<ref name="Hickie2006">{{Cite journal | last1 = Hickie | first1 = Ian | authorlink1 = Ian Hickie | last2 = Davenport | first2 = Tracey | authorlink2 = Tracey Davenport | last3 = Wakefield | first3 = Denis | authorlink3 = Denis Wakefield | last4 = Vollmer-Conna | first4 = Ute | authorlink4 = Ute Vollmer-Conna | last5 = Cameron | first5 = Barbara | authorlink5 = Barbara Cameron | last6 = Vernon | first6 = Suzanne D | authorlink6 = Suzanne Vernon | last7 = Reeves | first7 = William C | authorlink7 = William Reeves | last8 = Lloyd | first8 = Andrew | authorlink8 = Andrew Lloyd | last9 = Dubbo Infection Outcomes Study Group | title = Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study | journal = BMJ | volume = 333 | issue =575 | date = Sep 14, 2006 | pmid = 16950834 | doi = 10.1136/bmj.38933.585764.AE| url = http://www.bmj.com/content/333/7568/575.long}}</ref>
<ref name="Hornig20150201immune">{{Cite journal | last1 = Hornig | first1 = Mady | authorlink1 = Mady Hornig | last2 = Montoya | first2 = José G | authorlink2 = Jose Montoya | last3 = Klimas | first3 = Nancy G | authorlink3 = Nancy Klimas | last4 = Levine | first4 = Susan | authorlink4 = Susan Levine | last5 = Felsenstein | first5 = Donna | authorlink5 = Donna Felsenstein | last6 = Bateman | first6 = Lucinda | authorlink6 = Lucinda Bateman | last7 = Peterson | first7 = Daniel L | authorlink7 = Daniel Peterson | last8 = Gottschalk | first8 = C Gunnar | authorlink8 = Gunnar Gottschalk | last9 = Schultz | first9 = Andrew F | authorlink9 = Andrew Schultz | last10 = Che | first10 = Xiaoyu | authorlink10 = Xiaoyu Che | last11 = Eddy | first11 = Meredith L | authorlink11 = Meredith Eddy | last12 = Komaroff | first12 = Anthony L | authorlink12= Anthony Komaroff | last13 = Lipkin | first13 = W Ian | authorlink13 = Ian Lipkin | title = Distinct plasma immune signatures in ME/CFS are present early in the course of illness | journal = Science Advances | volume = 1 | issue = 1 | date = Feb 1, 2015 | url = http://advances.sciencemag.org/content/1/1/e1400121}}</ref>
<ref name="Primer2014">{{Cite web | last1 = ((International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis)) | authorlink = International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis | last2 = Friedberg | first2 = Fred | authorlink2 = Fred Friedberg | last3 = Bateman | first3 = Lucinda | authorlink3 = Lucinda Bateman | last4 = Bested | first4 = Alison C | authorlink4 = Alison Bested | last5 = Davenport | first5 = Todd | authorlink5 = Todd Davenport | last6 = Friedman | first6 = Kenneth J | authorlink6 = Kenneth Friedman | last7 = Gurwitt | first7 = Alan R | authorlink7 = Alan Gurwitt | last8 = Jason | first8 = Leonard A | authorlink8 = Leonard Jason | last9 = Lapp | first9 = Charles W | authorlink9 = Charles Lapp | last10 = Stevens | first10 = Staci R | authorlink10 = Staci Stevens | last11 = Underhill | first11 = Rosemary A | authorlink11 = Rosemary Underhill | last12 = Vallings | first12 = Rosamund | authorlink12= Rosamund Vallings | date = 2014 | url=https://www.massmecfs.org/images/pdf/Primer_2014.pdf | title =Chronic Fatigue Syndrome Myalgic Encephalomyelitis Primer for Clinical Practitioners }}</ref>
<ref name="IOM2015MECFS">{{Cite web | last1 = Institute of Medicine (US) | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness| publisher = The National Academies Press | location = Washington, DC, US| date = Feb 10, 2015 | isbn = 978-0-309-31689-7| url = https://pubmed.ncbi.nlm.nih.gov/25695122/}}</ref>
<ref name="Jason, Katz, 2017">{{Cite journal | last1 = Jason | first1 = Leonard A | authorlink1 = Leonard Jason | last2 = Katz | first2 = Ben | authorlink2 = Ben Katz | last3 = Gleason | first3 = Kristen | authorlink3 = | last4 = McManimen | first4 = Stephanie | authorlink4 = Stephanie McManimen | last5 = Sunnquist | first5 = Madison | authorlink5 = Madison Sunnquist | last6 = Thorpe | first6 = Taylor | authorlink6 = | title = A Prospective Study of Infectious Mononucleosis in College Students | journal = International Journal of Psychiatry | volume = 2 | issue = 1 | page = | date = 2017| doi = | url = https://www.researchgate.net/profile/Leonard_Jason/publication/312936696_A_prospective_study_of_Infectious_Mononucleosis_in_college_students/links/588a23cc92851c2779b2568c/A-prospective-study-of-Infectious-Mononucleosis-in-college-students.pdf }}</ref>
<ref name="Klimas20140621video">{{Cite web | last1 = Klimas | first1 = Nancy | authorlink1 = Nancy Klimas | title = ME/CFS Diagnosis and Name with Dr. Nancy Klimas (video)| date = Jun 21, 2014 | url = http://youtu.be/c2vIQ92wU9Y}}</ref>
<ref name="Komaroff20160217video">{{citation | last1 = Komaroff | first1 = Anthony | authorlink1 = Anthony Komaroff | last2 = Iskander | first2 = John | authorlink2 = John Iskander | title = Interview with Dr Anthony Komaroff | journal = CDC Public Health Ground Rounds - Beyond the Data - Chronic Fatigue Syndrome: Advancing Research and Clinical Education | date = Feb 17, 2016 | url = https://youtu.be/hRdn4A2SGic}}</ref>
<ref name="MEACTIONpacepetition">{{Cite web | last1 = #MEAction | authorlink1 = #MEAction | title = Petition: Misleading Claims Should Be Retracted| website = #MEAction | date = Oct 2015 | url = http://my.meaction.net/petitions/pace-trial-needs-review-now}}</ref>
<ref name="MEACTION20160313openletr">{{Cite web | last1 = #MEAction | authorlink1 = #MEAction | title = 24 organisations in 14 countries tell QMUL: Release the PACE data | date = Mar 13, 2016| url = http://www.meaction.net/2016/03/13/24-organisations-in-14-countries-tell-qmul-release-pace-data/#comment-2518}}</ref>
<ref name="MEASSUK20150529survey">{{Cite web | last1 = ME Association (UK) | authorlink1 = ME Association | date = May 29, 2015 | title = Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS| url = http://www.meassociation.org.uk/2015/05/23959/ }}</ref>
<ref name="NakatomiY2014">{{Cite journal | last1 = Nakatomi | first1 = Yasuhito | authorlink1 = Yasuhito Nakatomi | last2 = Mizuno | first2 = Kei | authorlink2 = Kei Mizuno | last3 = Ishii | first3 = Ishii | authorlink3 = Akira Ishii | last4 = Yasuhiro | first4 = Wada | authorlink4 = Yasuhiro Wada | last5 = Masaaki | first5 = Tanaka | authorlink5 = Masaaki Tanaka | last6 = Shusaku | first6 = Tazawa | authorlink6 = Shusaku Tazawa | last7 = Kayo | first7 = Onoe | authorlink7 = Kayo Onoe | last8 = Sanae | first8 = Fukuda | authorlink8 = Sanae Fukuda | last9 = Joji | first9 = Kawabe | authorlink9 = Joji Kawabe | last10 = Kazuhiro | first10 = Takahashi | authorlink10 = Kazuhiro Takahashi | last11 = Yosky | first11 = Kataoka | authorlink11 = Yosky Kataoka | last12 = Susumu | first12 = Shiomi | authorlink12= Susumu Shiomi | last13 = Kouzi | first13 = Yamaguti | authorlink13 = Kouzi Yamaguti | last14 = Masaaki | first14 = Inaba | authorlink14 = Masaaki Inaba | last15 = Hirohiko | first15 = Kuratsune | authorlink15 = Hirohiko Kuratsune | last16 = Yasuyoshi | first16 = Watanabe | authorlink16 = Yasuyoshi Watanabe | title = Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An ¹¹C-(R)-PK11195 PET Study| journal = Journal of Nuclear Medicine | volume = 55 | issue =6 | page = 945-50 | date = Mar 24, 2014 | pmid = 24665088 | doi = 10.2967/jnumed.113.131045| url = http://jnm.snmjournals.org/content/55/6/945.long}}</ref>
<ref name="NIHP2PFIN">{{citation | author = National Institutes of Health (US)| title = NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = Dec 9, 2014| url = https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf}}</ref>

<ref name="Phoenix20160222Norway2012">{{Citation | title = Norwegian patient survey: Experiences of therapeutic approaches (2012) | journal = Phoenix Rising Forum | date = Feb 22, 2016| url = http://forums.phoenixrising.me/index.php?threads/norwegian-patient-survey-experiences-of-therapeutic-approaches-2012-update.43193/ }}</ref>
<ref name="viroblogMECFS">{{Cite web | title = List of ME/CFS articles published at Virology Blog| url = http://www.virology.ws/mecfs/ }}</ref>
<ref name="DerekPrisk2009">{{Cite journal | last1 = Pheby | first1 = D | authorlink1 = Derek Pheby | last2 = Saffron | first2 = L | authorlink2 = | title = Risk factors for severe ME/CFS | journal = Biology and Medicine | volume = 1 | issue = 4 | date = 2009
| eissn = 09748369 | doi = | url = http://biolmedonline.com/Articles/vol1_4_50-74.pdf}}</ref>

</references>
[[Category:Primers]]

MEpedia:Discussion forum and Help desk

2024-05-20T20:09:08Z

Forestglip:added signature

__NEWSECTIONLINK__ {{NOINDEX}}
[[Category:MEpedia help]]
This '''Discussion Forum''' and '''Help Desk''' is a centralized place for the MEpedia community to discuss, seek advice, and give advice on the MEpedia project.
<br><br>
To ask a question or make a comment:
# Click on the "Add topic" tab at the top of the window, which will bring up the [[MEpedia:Source editor|Source Editor]]. (If you are not familiar with using the Source Editor, see [[Help:Discussion]].)
# Then add your question or comment. Be sure to sign your question/comment with four tildes: <code><nowiki>~~~~</nowiki></code>
# Keep an eye on your [[MEpedia:Watchlist|watchlist]] to see when someone has responded. (If you are not familiar with watchlists, see [[MEpedia:Watchlist]].)
You can also raise questions on the [[Help:Discussion|discussion]] (talk) page for a specific page or on another user's talk page. Since editor availability can vary, though, you may wish to ask your question here in order to get advice from whoever might see it soonest.
<br><br>
''Note:'' Editors willing to participate in community discussions, or to offer guidance to other editors, should please add this page to their [[MEpedia:Watchlist|watchlist]]. When a question/comment is resolved, mark it as ‘done’ with the “done” template tag, and collapse the discussion with the “collapse top” and “collapse bottom” template tags.

==Questions==

===Request for science help re: gancyclovir===
{{collapse top}}
I'm wondering if any more scientifically knowledgeable folks can help me with [[Gancyclovir]]. It's one of many pages that have no references at all and probably I'm best equipped just to tag them for cleanup, but since the entry only contains two claims, I thought I could track down refs to verify them. Ha ha. I found these studies which (''if'' I understand them correctly) make opposing claims about its effect on microglial: "[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4597339/ The antiviral drug ganciclovir does not inhibit microglial proliferation and activation]" (2015) versus "[https://www.ncbi.nlm.nih.gov/pubmed/24493798 Antiviral drug ganciclovir is a potent inhibitor of microglial proliferation and neuroinflammation]" (2014). Is anyone available to help either revise the page (if I'm correct that maybe these are conflicting results that require qualification on the page) or confirm for me that the latter ref (or some other ref?) suffices to verify the entry's current claim that gancyclovir "also reduces microglial activation." Thanks much. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 17:45, 15 April 2019 (EDT)
:Excellent question. I answer your question [https://forums.phoenixrising.me/threads/drs-who-treat-with-low-dose-valcyte.39092/page-2#post-1023199 here]. (Spoiler: it doesn’t reduce microglial activation after all.)
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:17, 15 April 2019 (EDT)
::Oh, thank you so much [[User:Pyrrhus|Pyrrhus]]! Ok, I've updated both the [[gancyclovir]] and [[valgancyclovir]]. If you have a chance to look over and make sure I've presented it accurately, I'd be grateful! (Whew, glad we're fixing this! Def the kind of thing that argues for working hard to recruit and retain a lot more folks to comb the 2500+ pages for such issues...) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 20:57, 15 April 2019 (EDT)
:::Ah belatedly reading down the rest of that thread to see the [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5806703/ follow-up STING paper] from the first authors. I'm pretty well in over my head scientifically at this point. If you have guidance about if/how it should be incorporated, that'd be greatly appreciated but I don't want to assign you work (!); I can also just add it as a "Learn more" and eventually someone else can incorporate as far as explaining its implications. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 21:42, 15 April 2019 (EDT)
::::You covered the two papers very well in the two pages- succinctly, accurately, and objectively. I'll summarize the STING paper and then you can decide whether to include my summary in the page(s).
::::"The authors of the original 2014 paper published a follow-up paper which described in-vitro and in-vivo experiments where they observed evidence that ganciclovir, in sufficient doses, might stimulate a type-I interferon response in microglia. The authors attributed this response to a DNA-sensing protein called STING. Although this pro-inflammatory finding might appear to contradict the authors 2014 paper, the authors explain the contradiction by saying:
::::<blockquote>We show that GCV can exhibit dual function in microglia (Figure S10): in naïve state, GCV induces microglia to be “primed”; on the other hand, GCV reduces inflammation in active microglia. </blockquote>"
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 00:07, 16 April 2019 (EDT)
:::::Oh fab. For those of us with limited neuroscience background, can I take a stab at restating your explanation and you tell me if I understood it correctly?

::::::The authors of the 2014 paper later published a follow-up paper (2017) based on in-vitro and in-vivo experiments using ganciclovir. This time they found a potentially pro-inflammatory response, specifically that ganciclovir, in sufficient doses, might stimulate a type-I interferon response in microglia. The authors attributed this response to a DNA-sensing protein called STING. While this result might appear to contradict their earlier anti-neuroinflammatory finding, they suggest it could indicate ganciclovir (GCV) "can exhibit dual function in microglia [...]: in naïve state, GCV induces microglia to be 'primed'; on the other hand, GCV reduces inflammation in active microglia."

:::::If my lay-ified paraphrase gets it wrong tho, I say let's use yours; it does seem like a finding worth flagging for researchers even if some less scientifically literate readers (ha, yours truly) may not get it (although also you're definitely better qualified than I to judge whether the study rates mention. So whatever you think is best.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 20:01, 16 April 2019 (EDT)
:::::: I‘ve made a few small changes to your text. Mainly, we have to be careful about our phrasing because there is currently a vicious fight over the very definition of “inflammation”. The old-timers stick stubbornly to the ancient greco-roman definition of inflammation, which does not recognize either the interferon response or neuroinflammation to have anything to do with what they consider to be “real” inflammation. Additionally, this is a hard paper to summarize because the authors themselves seem confused about their findings. Since you ask for my opinion, I don’t think their paper introduces anything new since their findings are perfectly consistent with the known toxicity of ganciclovir at high doses. But, in the interest of completeness, let’s include it. Hope this helps.
::::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:15, 16 April 2019 (EDT)
:::::::Ah thank you so much for your edits and your explanation [[User:Pyrrhus|Pyrrhus]]. This sounds like a good solution to me: the lay reader will def get the key take away that no, there's not firm evidence for this effect as the initial study suggested; and any scientist readers who want to get in the weeds will learn this study exists and they can go delve into its particulars if they wish. Cool! Thanks! Successful first use of the editor help desk! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 22:07, 16 April 2019 (EDT)
{{collapse bottom}}
{{done}} Resolved and copied to relevant entry's talk page for future reference. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 20:24, 17 April 2019 (EDT)

=== Broken citation template? ===
{{collapse top}}
Hi all. I'm suddenly having trouble using the "Cite web" template. In particular I'm trying to add https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Polymyalgia-Rheumatica as the reference for all the material I've added so far to the [[Polymyalgia rheumatica]] page I just started. But both in Visual Editor and in source code editing, I can't get the "Cite web" template to populate as a reference--it doesn't work at all in VE now and when I try source code, it adds all the info to the prose of the entry, rather than creating a footnote. Anybody have an idea what might be going on? I've used this extensively before (just for one example, see the [[HIV/AIDS]] page) and those references remain properly formatted so I am really stumped. Thanks for any advice! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 15:21, July 5, 2019 (EDT)
:With [[User:Notjusttired|Njt]]'s help, I copied pre-formatted source code and successfully inserted the ref, but in VE, even the Manual tab is still not recognizing the "Cite web" template (even though [[Template:Cite web]] is there!), and it doesn't seem to vary based either on the entry I'm editing or on the link I'm trying to add (e.g. no luck adding https://www.britannica.com/science/glucocorticoid to the [[Glucocorticoid]] page even tho Britannica is [[MediaWiki:Captcha-addurl-whitelist|whitelisted]]). Does anyone have any idea what's up with that? [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 22:05, July 5, 2019 (EDT)
::You’re not the only one to notice citation problems recently. It’s currently unclear to what extent the problems are on our side or on the side of the Citoid server. If it’s on our side , there are some things we can try. If it’s on the side of the Citoid server, then all wikis using that Citoid server should be seeing the same problems.
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 00:59, July 6, 2019 (EDT)
:::[[User:JenB]] has also reported pubmed links not being looked up, even ones that previously worked, and this appears to be related (they use the journal template). [[User:Kmdenmark]] [[User:Canele]] [[User:Pyrrhus]] What's happening is that Citoid, which generates the references, and/or the VisualEditor can't find the '''templateData''' so doesn't know what fields are in the template to fill out. This seems to have happened when the Citation, Cite web and other templates were accidentally then restored. I've copied the templateData from [[Template:Cite web/doc]] to [[Template:Cite web]] so the web one is working, but this isn't much of a solution since it means there's duplicate data there. Cite news still isn't working (Insert, Template, Cite news brings up no boxes to fill out). Looking elsewhere, a purge of the Citation json has been suggested (which basically means delete old versions) but I don't have access to do this. [[User:Kmdenmark]] You might see a purge option on [[MediaWiki:Citoid-template-type-map.json]] to click - if not try clicking once on this [https://me-pedia.org/w/api.php?action=purge&titles=MediaWiki:Citoid-template-type-map.json link to purge the page] - I get "file not found" when I try, probably because the page is protected or I don't have edit access - it might need unprotecting first. (Purge instructions suggested at bottom of [https://phabricator.wikimedia.org/T106938 this page)]. I don't know how or why but the citoid tool or visual editor or both don't seem to see the templateData and/or some other values that exist. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 08:20, July 6, 2019 (EDT)
::::”Purging” refers simply to refreshing the cache, not removing old versions. You don’t need any special permissions to purge the cache. Since the [[MediaWiki:Citoid-template-type-map.json]] page hasn’t recently been changed, I don’t think that purging the cache will have any effect.
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 13:54, July 6, 2019 (EDT)
:::::I think it's worth trying, although editing and saving without changing first is probably a good idea. Purging involves clearing old versions from the cache (temporary memory) in this case - but can also mean deleting old copies (I don't think mediawiki allows that). Normally to clear the cache online you just refresh the page, but I think it's the server cache that's the issue not our local cache. We are on web hosting do no physical server to restart. At the moment I'm trying to guess what might help since I don't know exactly where the problem is. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:23, July 6, 2019 (EDT)
:::Thank you both for the updates, it's very helpful to know at least it's not just me! Most of this punches well above my technical-skills weightclass so I'm afraid I don't have much to add, but if I'm reading [https://www.mediawiki.org/wiki/Citoid/Where_citoid_is_enabled this] correctly, it looks like Citoid is enabled on en-Wikipedia, and I can confirm the ref issue is not happening there. Just in case that helps! Thanks again. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:45, July 6, 2019 (EDT)
::::Yeah, the “edit and save without changing” trick works for TemplateData, and may work on Template pages in general, but it might be less applicable in other scenarios. MediaWiki uses a number of different caches, but most of the time, people refer to the MediaWiki server’s Page Cache when they say “purging the cache”. To purge the server’s Page Cache for a specific page, simply append <nowiki>?action=purge</nowiki> to the end of the page’s URL. (See https://www.mediawiki.org/wiki/Manual:Purge ). Hope this helps!
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 19:08, July 6, 2019 (EDT)
::::You probably already know this, but there is a [https://phabricator.wikimedia.org/T52372 known bug] where TemplateData in the doc subpage doesn’t show up in the main Template page. I encountered this recently. Although there are workarounds, this problem seems to show up surprisingly often. I think it might be better practice for us to consider storing all TemplateData in the main Template pages, and remove all TemplateData from doc subpages. This way we won’t have to worry about this bug anymore...
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:20, July 6, 2019 (EDT)
::::Okay, the TemplateData for all CS1 templates (<nowiki>{{Cite x}}</nowiki>) and the CS2 template (<nowiki>{{Citation}}</nowiki>) has been moved from the /doc subpages to the main Template pages. This should clear up everything on our end. If problems continue, it's probably on the side of the Citoid server. (Unless our TemplateData is wrong!)
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 22:49, July 6, 2019 (EDT)
:::::Thank you!! So after purging the cache on [[Glucocorticoid]] (just for instance), the Cite Web template does how populate in the Manual tab--however, automatic ref generating still isn't working even for sources we use all the time, like PubMed (I was trying to add https://www.ncbi.nlm.nih.gov/pubmed/10990237 without having to fill in every author manually). Just an update on where it stands, I know all this debugging is a ton of work. It's very greatly appreciated! Definitely affects how much content I am able to add, whether or not the refs can be largely automated or if all of it needs to be copied by hand. Thank you! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 23:14, July 6, 2019 (EDT)
::::::[[User:Notjusttired]] The news and web citations are now being generated, plus doi links and everything but pubmed works as far as I know. I tried the purge suggested by [[User:Pyrrhus]] on all relevant modules and templates plus a trivial edit to the Cite journal template and a purge. I didn't know about the templateData bug but the solution sounds better than having duplicate templatedata like before. But pubmed generation still isn't working. I don't know how Citoid links with Cite journal, or Zotero - it's Zotero that generates the references apparently. Can't think what else to try. [[User:Canele]] Either a non-pubmed link to the article, or a doi link will generate a reference as a workaround. There's no question that if is just here, I'm also sure it was caused by the accidental delete of templates that were restored very soon after. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:17, July 7, 2019 (EDT)
:::::::So it sounds like we fixed the problem that we had on our side. Now there's just the remaining problem on the side of the Citoid server. The Zotero software that runs on the Citoid server must continually be updated to keep pace with the website changes on journal websites, pubmed website, etc. Sometimes the Zotero software on the Citoid server might fall behind, and will fail to automatically produce a citation based on a URL. In this case, you just have to try different URL's until you find one that can successfully be converted into a citation. Hope this helps.
:::::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:56, July 7, 2019 (EDT)
::::::::Yes thank you both, that helps a lot and I agree that's where we are--just tried en-Wikipedia and encountered the same PubMed-specific problem. In this case it's an old text so I don't have a great option for different links to it (and predictably PMID is also down when PubMed URL is down) but that should be a good workaround for most things until they update Citoid/Zotero. A million thanks! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 21:04, July 7, 2019 (EDT)
{{done}} Resolved as best as we could. [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:27, July 12, 2019 (EDT)
:Citations from pubmed are fully working now - I haven't made any change since I last posted here. [[User:Canele]] [[User:JenB]] [[User:Pyrrhus]] if you find any examples of them not working please tag me and I will take a look. Canele's original [https://www.ncbi.nlm.nih.gov/pubmed/10990237 pmc ref] works for me on my user page. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:13, July 14, 2019 (EDT)
{{collapse bottom}}
{{done}} Now working.

===Auto-signing section headers===
Hi, starting a new section on a talk page automatically adds a signature to the header, with no possibility to remove it during the same edit. This is a very annoying feature. Can we get rid of it? [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 19:18, September 15, 2019 (EDT)

=== http to Secure https -- [[User:Fireballsky|Fireballsky]] ([[User talk:Fireballsky|talk]]) 17:58, October 21, 2020 (UTC) ===
{{Collapse top|Added to MEpedia suggested tasks}}
Hello,

There is a technical website issue that needs to be resolved. Currently, http and https are both being used in the URLs throughout the website.

This means that some users will land on non-secure pages (http w/out "s").

All pages need automatically redirect from http to https. This will keep everything secure, and improve SEO and organic search traffic.

I am not very familiar with the wiki platform, so I can't give specific details on where to make the changes. However, it looks like it's covered on here...

https://www.mediawiki.org/wiki/Manual:HTTPS

The above link goes over the dangers of having "http" URLs, and also talks about settings to auto-redirect everything to https (secure).

Thanks
:This is a great idea. I've added this to the [[MEpedia:Suggested_tasks#Developer_suggestions MEpedia suggested tasks], under Developer suggestions - feel free to edit or add it this page any time. ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 11:58, October 22, 2020 (UTC)
{{collapse bottom}}
=== Create and submit XML sitemap -- [[User:Fireballsky|Fireballsky]] ([[User talk:Fireballsky|talk]]) 18:22, October 21, 2020 (UTC) ===
{{collapse top |Added to MEpedia suggested tasks}}
A technical site improvement involving XML sitemap. This is a file that shows all the pages on a website. You then submit it to Google (Google Search Console) so Google can do a better job of displaying the website's pages/content in search results.

I don't believe me-pedia currently has an XML sitemap, because it would likely be found here - https://me-pedia.org/sitemap.xml

It looks like the instructions are here - https://www.mediawiki.org/wiki/Extension:AutoSitemap

After there's a sitemap file created, we will need to submit this file in Google Search Console. To do this, go here - https://search.google.com/search-console/welcome, in the URL Prefix section, add "https://me-pedia.org". Then verify using one of the methods provided. After that, you will see a Sitemaps section on the left. Here you will be able to add the URL where Google can find the XML sitemap.

After this, you'll want to create a second property in Google Search Console. This time, add the URL "http://me-pedia.org" (<<< w/out the "s"). Then do the same steps as above.

Let me know if there are any questions.
:This is a great find! I previously suggested adding a sitemap but this extension would be a better method - although we need to update the MediaWiki version first (this should happen later this year). I've added the to [[MEpedia:Suggested_tasks]].

Are you interested in joining the Slack channel, where we discuss things like developer agegroup suggestions? ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 12:09, October 22, 2020 (UTC)
{{collapse bottom}}

== Duplicate Citations: Merge these together -- [[User:Fireballsky|Fireballsky]] ([[User talk:Fireballsky|talk]]) 21:38, November 21, 2020 (UTC) ==

There are a lot of instances where the Reference section will show the exact same citation (word for word) multiple times. I've even seen the same citation listed 5 or 6 times.

For instance, the Myalgic encephalomyelitis: International Consensus Criteria citation is listed (3) times in the Reference section of the Immune system page - [[https://me-pedia.org/wiki/Immune_system]]

Supposedly, there's a tool to fix these...

https://en.wikipedia.org/wiki/Wikipedia:Citing_sources#Duplicate_citations
https://en.wikipedia.org/wiki/Wikipedia:AutoWikiBrowser

== Can I just delete the consequential symptoms page? -- [[Special:Contributions/198.144.121.43|198.144.121.43]] 02:34, February 12, 2022 (UTC) ==

I do not have the health capacity to read the rules or search dark-ish references that could support the claim. I added to Talk but I fear the page will sit there for years potentially doing harm.

* [[Consequential Symptoms]] - I agree, I don't really know what that page is even talking about. [[User:Forestglip|Forestglip]] ([[User talk:Forestglip|talk]]) 23:16, May 19, 2024 (UTC)

** Given there are no references on that page, and that a quick google search reveals it may be slightly misleading, I would agree. The term “consequential symptoms” does exist in medicine for conditions which arise as a result of an underlying condition. However, I’ve never heard this being used in relation to worsening from PEM as this page suggests. Maybe, in the slim likelihood that someone would in the future like to invest some time into the page, we could send it back to “draft” state? [[User:Yannlk]]

== Adding mobile-friendly skins -- [[Special:Contributions/104.193.135.218|104.193.135.218]] 22:34, May 19, 2024 (UTC) -- [[Special:Contributions/104.193.135.218|104.193.135.218]] 22:34, May 19, 2024 (UTC) ==

Someone on [https://s4me.info/threads/read-first-welcome-to-the-mepedia-subforum.5306/page-2#post-533134 S4ME] was commenting on the editor being buggy on mobile:

"Is there a recommended browser to use when editing mepedia on mobile? I’ve managed a couple edits, but atleast on my safari browser on my phone it’s very clonky and the ui has some obvious bugs. Am unable to use tablet or laptop due to severity."

Maybe consider installing a more [https://m.mediawiki.org/wiki/Manual:Mobiles,_tablets_and_responsive_design mobile-friendly skin]. This doesn't require changing the default, but it allows users to select a custom skin if they would like. [[User:Forestglip|Forestglip]] ([[User talk:Forestglip|talk]]) 20:08, May 20, 2024 (UTC)

List of ME/CFS studies controlling for deconditioning

2024-05-20T00:33:11Z

Forestglip:/* Studies */ added buspirone challenge studies, and summarized first paper's description

MEpedia:Discussion forum and Help desk

2024-05-19T23:16:52Z

Forestglip:comment

__NEWSECTIONLINK__ {{NOINDEX}}
[[Category:MEpedia help]]
This '''Discussion Forum''' and '''Help Desk''' is a centralized place for the MEpedia community to discuss, seek advice, and give advice on the MEpedia project.
<br><br>
To ask a question or make a comment:
# Click on the "Add topic" tab at the top of the window, which will bring up the [[MEpedia:Source editor|Source Editor]]. (If you are not familiar with using the Source Editor, see [[Help:Discussion]].)
# Then add your question or comment. Be sure to sign your question/comment with four tildes: <code><nowiki>~~~~</nowiki></code>
# Keep an eye on your [[MEpedia:Watchlist|watchlist]] to see when someone has responded. (If you are not familiar with watchlists, see [[MEpedia:Watchlist]].)
You can also raise questions on the [[Help:Discussion|discussion]] (talk) page for a specific page or on another user's talk page. Since editor availability can vary, though, you may wish to ask your question here in order to get advice from whoever might see it soonest.
<br><br>
''Note:'' Editors willing to participate in community discussions, or to offer guidance to other editors, should please add this page to their [[MEpedia:Watchlist|watchlist]]. When a question/comment is resolved, mark it as ‘done’ with the “done” template tag, and collapse the discussion with the “collapse top” and “collapse bottom” template tags.

==Questions==

===Request for science help re: gancyclovir===
{{collapse top}}
I'm wondering if any more scientifically knowledgeable folks can help me with [[Gancyclovir]]. It's one of many pages that have no references at all and probably I'm best equipped just to tag them for cleanup, but since the entry only contains two claims, I thought I could track down refs to verify them. Ha ha. I found these studies which (''if'' I understand them correctly) make opposing claims about its effect on microglial: "[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4597339/ The antiviral drug ganciclovir does not inhibit microglial proliferation and activation]" (2015) versus "[https://www.ncbi.nlm.nih.gov/pubmed/24493798 Antiviral drug ganciclovir is a potent inhibitor of microglial proliferation and neuroinflammation]" (2014). Is anyone available to help either revise the page (if I'm correct that maybe these are conflicting results that require qualification on the page) or confirm for me that the latter ref (or some other ref?) suffices to verify the entry's current claim that gancyclovir "also reduces microglial activation." Thanks much. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 17:45, 15 April 2019 (EDT)
:Excellent question. I answer your question [https://forums.phoenixrising.me/threads/drs-who-treat-with-low-dose-valcyte.39092/page-2#post-1023199 here]. (Spoiler: it doesn’t reduce microglial activation after all.)
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:17, 15 April 2019 (EDT)
::Oh, thank you so much [[User:Pyrrhus|Pyrrhus]]! Ok, I've updated both the [[gancyclovir]] and [[valgancyclovir]]. If you have a chance to look over and make sure I've presented it accurately, I'd be grateful! (Whew, glad we're fixing this! Def the kind of thing that argues for working hard to recruit and retain a lot more folks to comb the 2500+ pages for such issues...) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 20:57, 15 April 2019 (EDT)
:::Ah belatedly reading down the rest of that thread to see the [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5806703/ follow-up STING paper] from the first authors. I'm pretty well in over my head scientifically at this point. If you have guidance about if/how it should be incorporated, that'd be greatly appreciated but I don't want to assign you work (!); I can also just add it as a "Learn more" and eventually someone else can incorporate as far as explaining its implications. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 21:42, 15 April 2019 (EDT)
::::You covered the two papers very well in the two pages- succinctly, accurately, and objectively. I'll summarize the STING paper and then you can decide whether to include my summary in the page(s).
::::"The authors of the original 2014 paper published a follow-up paper which described in-vitro and in-vivo experiments where they observed evidence that ganciclovir, in sufficient doses, might stimulate a type-I interferon response in microglia. The authors attributed this response to a DNA-sensing protein called STING. Although this pro-inflammatory finding might appear to contradict the authors 2014 paper, the authors explain the contradiction by saying:
::::<blockquote>We show that GCV can exhibit dual function in microglia (Figure S10): in naïve state, GCV induces microglia to be “primed”; on the other hand, GCV reduces inflammation in active microglia. </blockquote>"
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 00:07, 16 April 2019 (EDT)
:::::Oh fab. For those of us with limited neuroscience background, can I take a stab at restating your explanation and you tell me if I understood it correctly?

::::::The authors of the 2014 paper later published a follow-up paper (2017) based on in-vitro and in-vivo experiments using ganciclovir. This time they found a potentially pro-inflammatory response, specifically that ganciclovir, in sufficient doses, might stimulate a type-I interferon response in microglia. The authors attributed this response to a DNA-sensing protein called STING. While this result might appear to contradict their earlier anti-neuroinflammatory finding, they suggest it could indicate ganciclovir (GCV) "can exhibit dual function in microglia [...]: in naïve state, GCV induces microglia to be 'primed'; on the other hand, GCV reduces inflammation in active microglia."

:::::If my lay-ified paraphrase gets it wrong tho, I say let's use yours; it does seem like a finding worth flagging for researchers even if some less scientifically literate readers (ha, yours truly) may not get it (although also you're definitely better qualified than I to judge whether the study rates mention. So whatever you think is best.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 20:01, 16 April 2019 (EDT)
:::::: I‘ve made a few small changes to your text. Mainly, we have to be careful about our phrasing because there is currently a vicious fight over the very definition of “inflammation”. The old-timers stick stubbornly to the ancient greco-roman definition of inflammation, which does not recognize either the interferon response or neuroinflammation to have anything to do with what they consider to be “real” inflammation. Additionally, this is a hard paper to summarize because the authors themselves seem confused about their findings. Since you ask for my opinion, I don’t think their paper introduces anything new since their findings are perfectly consistent with the known toxicity of ganciclovir at high doses. But, in the interest of completeness, let’s include it. Hope this helps.
::::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:15, 16 April 2019 (EDT)
:::::::Ah thank you so much for your edits and your explanation [[User:Pyrrhus|Pyrrhus]]. This sounds like a good solution to me: the lay reader will def get the key take away that no, there's not firm evidence for this effect as the initial study suggested; and any scientist readers who want to get in the weeds will learn this study exists and they can go delve into its particulars if they wish. Cool! Thanks! Successful first use of the editor help desk! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 22:07, 16 April 2019 (EDT)
{{collapse bottom}}
{{done}} Resolved and copied to relevant entry's talk page for future reference. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 20:24, 17 April 2019 (EDT)

=== Broken citation template? ===
{{collapse top}}
Hi all. I'm suddenly having trouble using the "Cite web" template. In particular I'm trying to add https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Polymyalgia-Rheumatica as the reference for all the material I've added so far to the [[Polymyalgia rheumatica]] page I just started. But both in Visual Editor and in source code editing, I can't get the "Cite web" template to populate as a reference--it doesn't work at all in VE now and when I try source code, it adds all the info to the prose of the entry, rather than creating a footnote. Anybody have an idea what might be going on? I've used this extensively before (just for one example, see the [[HIV/AIDS]] page) and those references remain properly formatted so I am really stumped. Thanks for any advice! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 15:21, July 5, 2019 (EDT)
:With [[User:Notjusttired|Njt]]'s help, I copied pre-formatted source code and successfully inserted the ref, but in VE, even the Manual tab is still not recognizing the "Cite web" template (even though [[Template:Cite web]] is there!), and it doesn't seem to vary based either on the entry I'm editing or on the link I'm trying to add (e.g. no luck adding https://www.britannica.com/science/glucocorticoid to the [[Glucocorticoid]] page even tho Britannica is [[MediaWiki:Captcha-addurl-whitelist|whitelisted]]). Does anyone have any idea what's up with that? [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 22:05, July 5, 2019 (EDT)
::You’re not the only one to notice citation problems recently. It’s currently unclear to what extent the problems are on our side or on the side of the Citoid server. If it’s on our side , there are some things we can try. If it’s on the side of the Citoid server, then all wikis using that Citoid server should be seeing the same problems.
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 00:59, July 6, 2019 (EDT)
:::[[User:JenB]] has also reported pubmed links not being looked up, even ones that previously worked, and this appears to be related (they use the journal template). [[User:Kmdenmark]] [[User:Canele]] [[User:Pyrrhus]] What's happening is that Citoid, which generates the references, and/or the VisualEditor can't find the '''templateData''' so doesn't know what fields are in the template to fill out. This seems to have happened when the Citation, Cite web and other templates were accidentally then restored. I've copied the templateData from [[Template:Cite web/doc]] to [[Template:Cite web]] so the web one is working, but this isn't much of a solution since it means there's duplicate data there. Cite news still isn't working (Insert, Template, Cite news brings up no boxes to fill out). Looking elsewhere, a purge of the Citation json has been suggested (which basically means delete old versions) but I don't have access to do this. [[User:Kmdenmark]] You might see a purge option on [[MediaWiki:Citoid-template-type-map.json]] to click - if not try clicking once on this [https://me-pedia.org/w/api.php?action=purge&titles=MediaWiki:Citoid-template-type-map.json link to purge the page] - I get "file not found" when I try, probably because the page is protected or I don't have edit access - it might need unprotecting first. (Purge instructions suggested at bottom of [https://phabricator.wikimedia.org/T106938 this page)]. I don't know how or why but the citoid tool or visual editor or both don't seem to see the templateData and/or some other values that exist. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 08:20, July 6, 2019 (EDT)
::::”Purging” refers simply to refreshing the cache, not removing old versions. You don’t need any special permissions to purge the cache. Since the [[MediaWiki:Citoid-template-type-map.json]] page hasn’t recently been changed, I don’t think that purging the cache will have any effect.
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 13:54, July 6, 2019 (EDT)
:::::I think it's worth trying, although editing and saving without changing first is probably a good idea. Purging involves clearing old versions from the cache (temporary memory) in this case - but can also mean deleting old copies (I don't think mediawiki allows that). Normally to clear the cache online you just refresh the page, but I think it's the server cache that's the issue not our local cache. We are on web hosting do no physical server to restart. At the moment I'm trying to guess what might help since I don't know exactly where the problem is. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:23, July 6, 2019 (EDT)
:::Thank you both for the updates, it's very helpful to know at least it's not just me! Most of this punches well above my technical-skills weightclass so I'm afraid I don't have much to add, but if I'm reading [https://www.mediawiki.org/wiki/Citoid/Where_citoid_is_enabled this] correctly, it looks like Citoid is enabled on en-Wikipedia, and I can confirm the ref issue is not happening there. Just in case that helps! Thanks again. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:45, July 6, 2019 (EDT)
::::Yeah, the “edit and save without changing” trick works for TemplateData, and may work on Template pages in general, but it might be less applicable in other scenarios. MediaWiki uses a number of different caches, but most of the time, people refer to the MediaWiki server’s Page Cache when they say “purging the cache”. To purge the server’s Page Cache for a specific page, simply append <nowiki>?action=purge</nowiki> to the end of the page’s URL. (See https://www.mediawiki.org/wiki/Manual:Purge ). Hope this helps!
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 19:08, July 6, 2019 (EDT)
::::You probably already know this, but there is a [https://phabricator.wikimedia.org/T52372 known bug] where TemplateData in the doc subpage doesn’t show up in the main Template page. I encountered this recently. Although there are workarounds, this problem seems to show up surprisingly often. I think it might be better practice for us to consider storing all TemplateData in the main Template pages, and remove all TemplateData from doc subpages. This way we won’t have to worry about this bug anymore...
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:20, July 6, 2019 (EDT)
::::Okay, the TemplateData for all CS1 templates (<nowiki>{{Cite x}}</nowiki>) and the CS2 template (<nowiki>{{Citation}}</nowiki>) has been moved from the /doc subpages to the main Template pages. This should clear up everything on our end. If problems continue, it's probably on the side of the Citoid server. (Unless our TemplateData is wrong!)
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 22:49, July 6, 2019 (EDT)
:::::Thank you!! So after purging the cache on [[Glucocorticoid]] (just for instance), the Cite Web template does how populate in the Manual tab--however, automatic ref generating still isn't working even for sources we use all the time, like PubMed (I was trying to add https://www.ncbi.nlm.nih.gov/pubmed/10990237 without having to fill in every author manually). Just an update on where it stands, I know all this debugging is a ton of work. It's very greatly appreciated! Definitely affects how much content I am able to add, whether or not the refs can be largely automated or if all of it needs to be copied by hand. Thank you! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 23:14, July 6, 2019 (EDT)
::::::[[User:Notjusttired]] The news and web citations are now being generated, plus doi links and everything but pubmed works as far as I know. I tried the purge suggested by [[User:Pyrrhus]] on all relevant modules and templates plus a trivial edit to the Cite journal template and a purge. I didn't know about the templateData bug but the solution sounds better than having duplicate templatedata like before. But pubmed generation still isn't working. I don't know how Citoid links with Cite journal, or Zotero - it's Zotero that generates the references apparently. Can't think what else to try. [[User:Canele]] Either a non-pubmed link to the article, or a doi link will generate a reference as a workaround. There's no question that if is just here, I'm also sure it was caused by the accidental delete of templates that were restored very soon after. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:17, July 7, 2019 (EDT)
:::::::So it sounds like we fixed the problem that we had on our side. Now there's just the remaining problem on the side of the Citoid server. The Zotero software that runs on the Citoid server must continually be updated to keep pace with the website changes on journal websites, pubmed website, etc. Sometimes the Zotero software on the Citoid server might fall behind, and will fail to automatically produce a citation based on a URL. In this case, you just have to try different URL's until you find one that can successfully be converted into a citation. Hope this helps.
:::::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:56, July 7, 2019 (EDT)
::::::::Yes thank you both, that helps a lot and I agree that's where we are--just tried en-Wikipedia and encountered the same PubMed-specific problem. In this case it's an old text so I don't have a great option for different links to it (and predictably PMID is also down when PubMed URL is down) but that should be a good workaround for most things until they update Citoid/Zotero. A million thanks! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 21:04, July 7, 2019 (EDT)
{{done}} Resolved as best as we could. [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:27, July 12, 2019 (EDT)
:Citations from pubmed are fully working now - I haven't made any change since I last posted here. [[User:Canele]] [[User:JenB]] [[User:Pyrrhus]] if you find any examples of them not working please tag me and I will take a look. Canele's original [https://www.ncbi.nlm.nih.gov/pubmed/10990237 pmc ref] works for me on my user page. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:13, July 14, 2019 (EDT)
{{collapse bottom}}
{{done}} Now working.

===Auto-signing section headers===
Hi, starting a new section on a talk page automatically adds a signature to the header, with no possibility to remove it during the same edit. This is a very annoying feature. Can we get rid of it? [[User:Guido den Broeder|Guido den Broeder]] ([[User talk:Guido den Broeder|talk]]) 19:18, September 15, 2019 (EDT)

=== http to Secure https -- [[User:Fireballsky|Fireballsky]] ([[User talk:Fireballsky|talk]]) 17:58, October 21, 2020 (UTC) ===
{{Collapse top|Added to MEpedia suggested tasks}}
Hello,

There is a technical website issue that needs to be resolved. Currently, http and https are both being used in the URLs throughout the website.

This means that some users will land on non-secure pages (http w/out "s").

All pages need automatically redirect from http to https. This will keep everything secure, and improve SEO and organic search traffic.

I am not very familiar with the wiki platform, so I can't give specific details on where to make the changes. However, it looks like it's covered on here...

https://www.mediawiki.org/wiki/Manual:HTTPS

The above link goes over the dangers of having "http" URLs, and also talks about settings to auto-redirect everything to https (secure).

Thanks
:This is a great idea. I've added this to the [[MEpedia:Suggested_tasks#Developer_suggestions MEpedia suggested tasks], under Developer suggestions - feel free to edit or add it this page any time. ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 11:58, October 22, 2020 (UTC)
{{collapse bottom}}
=== Create and submit XML sitemap -- [[User:Fireballsky|Fireballsky]] ([[User talk:Fireballsky|talk]]) 18:22, October 21, 2020 (UTC) ===
{{collapse top |Added to MEpedia suggested tasks}}
A technical site improvement involving XML sitemap. This is a file that shows all the pages on a website. You then submit it to Google (Google Search Console) so Google can do a better job of displaying the website's pages/content in search results.

I don't believe me-pedia currently has an XML sitemap, because it would likely be found here - https://me-pedia.org/sitemap.xml

It looks like the instructions are here - https://www.mediawiki.org/wiki/Extension:AutoSitemap

After there's a sitemap file created, we will need to submit this file in Google Search Console. To do this, go here - https://search.google.com/search-console/welcome, in the URL Prefix section, add "https://me-pedia.org". Then verify using one of the methods provided. After that, you will see a Sitemaps section on the left. Here you will be able to add the URL where Google can find the XML sitemap.

After this, you'll want to create a second property in Google Search Console. This time, add the URL "http://me-pedia.org" (<<< w/out the "s"). Then do the same steps as above.

Let me know if there are any questions.
:This is a great find! I previously suggested adding a sitemap but this extension would be a better method - although we need to update the MediaWiki version first (this should happen later this year). I've added the to [[MEpedia:Suggested_tasks]].

Are you interested in joining the Slack channel, where we discuss things like developer agegroup suggestions? ~[[User:Notjusttired|Njt]] ([[User talk:Notjusttired|talk]]) 12:09, October 22, 2020 (UTC)
{{collapse bottom}}

== Duplicate Citations: Merge these together -- [[User:Fireballsky|Fireballsky]] ([[User talk:Fireballsky|talk]]) 21:38, November 21, 2020 (UTC) ==

There are a lot of instances where the Reference section will show the exact same citation (word for word) multiple times. I've even seen the same citation listed 5 or 6 times.

For instance, the Myalgic encephalomyelitis: International Consensus Criteria citation is listed (3) times in the Reference section of the Immune system page - [[https://me-pedia.org/wiki/Immune_system]]

Supposedly, there's a tool to fix these...

https://en.wikipedia.org/wiki/Wikipedia:Citing_sources#Duplicate_citations
https://en.wikipedia.org/wiki/Wikipedia:AutoWikiBrowser

== Can I just delete the consequential symptoms page? -- [[Special:Contributions/198.144.121.43|198.144.121.43]] 02:34, February 12, 2022 (UTC) ==

I do not have the health capacity to read the rules or search dark-ish references that could support the claim. I added to Talk but I fear the page will sit there for years potentially doing harm.

* [[Consequential Symptoms]] - I agree, I don't really know what that page is even talking about. [[User:Forestglip|Forestglip]] ([[User talk:Forestglip|talk]]) 23:16, May 19, 2024 (UTC)

== Adding mobile-friendly skins -- [[Special:Contributions/104.193.135.218|104.193.135.218]] 22:34, May 19, 2024 (UTC) -- [[Special:Contributions/104.193.135.218|104.193.135.218]] 22:34, May 19, 2024 (UTC) ==

Someone on [https://s4me.info/threads/read-first-welcome-to-the-mepedia-subforum.5306/page-2#post-533134 S4ME] was commenting on the editor being buggy on mobile:

"Is there a recommended browser to use when editing mepedia on mobile? I’ve managed a couple edits, but atleast on my safari browser on my phone it’s very clonky and the ui has some obvious bugs. Am unable to use tablet or laptop due to severity."

Maybe consider installing a more [https://m.mediawiki.org/wiki/Manual:Mobiles,_tablets_and_responsive_design mobile-friendly skin]. This doesn't require changing the default, but it allows users to select a custom skin if they would like.

List of ME/CFS studies controlling for deconditioning

2024-05-17T00:15:08Z

Forestglip:changed wording

Some major potential confounding factors inherent in research on ME/CFS patients include physical deconditioning and social isolation. This page lists studies which attempt to control for potential confounders, for example by including a second control group of severely deconditioned people in studies observing biological abnormalities.

== Studies ==

* Understanding Muscle Dysfunction in Chronic Fatigue Syndrome, 2016<ref>{{Cite journal|title=Understanding Muscle Dysfunction in Chronic Fatigue Syndrome|date=2016|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779819/|journal=Journal of Aging Research|volume=2016|pages=2497348|last=Rutherford|first=Gina|last2=Manning|first2=Philip|last3=Newton|first3=Julia L.|doi=10.1155/2016/2497348|pmc=4779819|pmid=26998359|issn=2090-2204}}</ref>
** "Based on the findings the authors suggested that the profound intramuscular acidosis exhibited with repeat exercise to be at least in part related to poor aerobic capacity. This in relation to the physiology of fatigue closely mirrors that observed in patients with the autoimmune disease primary biliary cirrhosis (PBC). '''PBC exhibits a comparable peripheral pattern and a similar level to fatigue to CFS/ME.'''<ref>{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=Jul 2010|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref> In a study by Hollingsworth and colleagues<ref name=":0">{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=Jul 2010|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref> '''PBC patients exhibited profound and comparable intramuscular acidosis to the CFS/ME patients''' in the Luin et al. study<ref>{{Cite journal|title=Effects of H₂O₂ on electrical membrane properties of skeletal myotubes|date=Jan 15, 2011|url=https://pubmed.ncbi.nlm.nih.gov/21109001/|journal=Free Radical Biology & Medicine|volume=50|issue=2|pages=337–344|last=Luin|first=Elisa|last2=Giniatullin|first2=Rashid|last3=Sciancalepore|first3=Marina|doi=10.1016/j.freeradbiomed.2010.11.015|pmid=21109001|issn=1873-4596}}</ref> following the same repeat exercise protocol. However, one pivotal difference between the conditions, which may contribute to the severity of fatigue in CFS/ME, relates to acid homeostasis. '''In contrast to CFS/ME patients, when PBC patients undergo repeat exercise the extent of acidosis within the muscle decreases with each repeated exercise bout.''' This may suggest a compensatory mechanism, which operates to resolve excess acidosis. One potential mechanism that may account for this is increased proton flux and the speed of onset of maximum proton excretion with repeat exercise.<ref name=":1">{{Cite journal|title=Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case-control study|date=Feb 2012|url=https://pubmed.ncbi.nlm.nih.gov/21749371/|journal=European Journal of Clinical Investigation|volume=42|issue=2|pages=186–194|last=Jones|first=David E. J.|last2=Hollingsworth|first2=Kieren G.|last3=Jakovljevic|first3=Djordje G.|last4=Fattakhova|first4=Gulnar|last5=Pairman|first5=Jessie|last6=Blamire|first6=Andrew M.|last7=Trenell|first7=Michael I.|last8=Newton|first8=Julia L.|doi=10.1111/j.1365-2362.2011.02567.x|pmid=21749371|issn=1365-2362}}</ref><ref name=":0" /> This mechanism also plays a role in mitochondrial disease whereby increased proton efflux postexercise helps to compensate for decreased aerobic capacity.<ref>{{Cite journal|title=Aerobic exercise and muscle metabolism in patients with mitochondrial myopathy|date=Apr 2006|url=https://pubmed.ncbi.nlm.nih.gov/16372322/|journal=Muscle & Nerve|volume=33|issue=4|pages=524–531|last=Trenell|first=Michael I.|last2=Sue|first2=Carolyn M.|last3=Kemp|first3=Graham J.|last4=Sachinwalla|first4=Toos|last5=Thompson|first5=Campbell H.|doi=10.1002/mus.20484|pmid=16372322|issn=0148-639X}}</ref> Nevertheless, it would appear that in comparison to other conditions that exhibit reduced aerobic capacity and acidosis, CFS/ME patients are unable to compensate for an increased reliance upon anaerobic energy pathways during exercise.<ref name=":1" />"

== References ==
{{Reflist}}

List of ME/CFS studies controlling for deconditioning

2024-05-17T00:07:37Z

Forestglip:fixed dates in references

Some major potential confounding factors inherent in research on ME/CFS patients include physical deconditioning and social isolation. This page lists studies which attempt to control for these potential confounders, for example by including a second control group of severely deconditioned people in studies observing biological abnormalities.

== Studies ==

* Understanding Muscle Dysfunction in Chronic Fatigue Syndrome, 2016<ref>{{Cite journal|title=Understanding Muscle Dysfunction in Chronic Fatigue Syndrome|date=2016|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779819/|journal=Journal of Aging Research|volume=2016|pages=2497348|last=Rutherford|first=Gina|last2=Manning|first2=Philip|last3=Newton|first3=Julia L.|doi=10.1155/2016/2497348|pmc=4779819|pmid=26998359|issn=2090-2204}}</ref>
** "Based on the findings the authors suggested that the profound intramuscular acidosis exhibited with repeat exercise to be at least in part related to poor aerobic capacity. This in relation to the physiology of fatigue closely mirrors that observed in patients with the autoimmune disease primary biliary cirrhosis (PBC). '''PBC exhibits a comparable peripheral pattern and a similar level to fatigue to CFS/ME.'''<ref>{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=Jul 2010|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref> In a study by Hollingsworth and colleagues<ref name=":0">{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=Jul 2010|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref> '''PBC patients exhibited profound and comparable intramuscular acidosis to the CFS/ME patients''' in the Luin et al. study<ref>{{Cite journal|title=Effects of H₂O₂ on electrical membrane properties of skeletal myotubes|date=Jan 15, 2011|url=https://pubmed.ncbi.nlm.nih.gov/21109001/|journal=Free Radical Biology & Medicine|volume=50|issue=2|pages=337–344|last=Luin|first=Elisa|last2=Giniatullin|first2=Rashid|last3=Sciancalepore|first3=Marina|doi=10.1016/j.freeradbiomed.2010.11.015|pmid=21109001|issn=1873-4596}}</ref> following the same repeat exercise protocol. However, one pivotal difference between the conditions, which may contribute to the severity of fatigue in CFS/ME, relates to acid homeostasis. '''In contrast to CFS/ME patients, when PBC patients undergo repeat exercise the extent of acidosis within the muscle decreases with each repeated exercise bout.''' This may suggest a compensatory mechanism, which operates to resolve excess acidosis. One potential mechanism that may account for this is increased proton flux and the speed of onset of maximum proton excretion with repeat exercise.<ref name=":1">{{Cite journal|title=Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case-control study|date=Feb 2012|url=https://pubmed.ncbi.nlm.nih.gov/21749371/|journal=European Journal of Clinical Investigation|volume=42|issue=2|pages=186–194|last=Jones|first=David E. J.|last2=Hollingsworth|first2=Kieren G.|last3=Jakovljevic|first3=Djordje G.|last4=Fattakhova|first4=Gulnar|last5=Pairman|first5=Jessie|last6=Blamire|first6=Andrew M.|last7=Trenell|first7=Michael I.|last8=Newton|first8=Julia L.|doi=10.1111/j.1365-2362.2011.02567.x|pmid=21749371|issn=1365-2362}}</ref><ref name=":0" /> This mechanism also plays a role in mitochondrial disease whereby increased proton efflux postexercise helps to compensate for decreased aerobic capacity.<ref>{{Cite journal|title=Aerobic exercise and muscle metabolism in patients with mitochondrial myopathy|date=Apr 2006|url=https://pubmed.ncbi.nlm.nih.gov/16372322/|journal=Muscle & Nerve|volume=33|issue=4|pages=524–531|last=Trenell|first=Michael I.|last2=Sue|first2=Carolyn M.|last3=Kemp|first3=Graham J.|last4=Sachinwalla|first4=Toos|last5=Thompson|first5=Campbell H.|doi=10.1002/mus.20484|pmid=16372322|issn=0148-639X}}</ref> Nevertheless, it would appear that in comparison to other conditions that exhibit reduced aerobic capacity and acidosis, CFS/ME patients are unable to compensate for an increased reliance upon anaerobic energy pathways during exercise.<ref name=":1" />"

== References ==
{{Reflist}}

List of ME/CFS studies controlling for deconditioning

2024-05-17T00:04:20Z

Forestglip:added reference section

Some major potential confounding factors inherent in research on ME/CFS patients include physical deconditioning and social isolation. This page lists studies which attempt to control for these potential confounders, for example by including a second control group of severely deconditioned people in studies observing biological abnormalities.

== Studies ==

* Understanding Muscle Dysfunction in Chronic Fatigue Syndrome, 2016<ref>{{Cite journal|title=Understanding Muscle Dysfunction in Chronic Fatigue Syndrome|date=2016|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779819/|journal=Journal of Aging Research|volume=2016|pages=2497348|last=Rutherford|first=Gina|last2=Manning|first2=Philip|last3=Newton|first3=Julia L.|doi=10.1155/2016/2497348|pmc=4779819|pmid=26998359|issn=2090-2204}}</ref>
** "Based on the findings the authors suggested that the profound intramuscular acidosis exhibited with repeat exercise to be at least in part related to poor aerobic capacity. This in relation to the physiology of fatigue closely mirrors that observed in patients with the autoimmune disease primary biliary cirrhosis (PBC). '''PBC exhibits a comparable peripheral pattern and a similar level to fatigue to CFS/ME.'''<ref>{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=2010-07|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref> In a study by Hollingsworth and colleagues<ref name=":0">{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=2010-07|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref> '''PBC patients exhibited profound and comparable intramuscular acidosis to the CFS/ME patients''' in the Luin et al. study<ref>{{Cite journal|title=Effects of H₂O₂ on electrical membrane properties of skeletal myotubes|date=2011-01-15|url=https://pubmed.ncbi.nlm.nih.gov/21109001/|journal=Free Radical Biology & Medicine|volume=50|issue=2|pages=337–344|last=Luin|first=Elisa|last2=Giniatullin|first2=Rashid|last3=Sciancalepore|first3=Marina|doi=10.1016/j.freeradbiomed.2010.11.015|pmid=21109001|issn=1873-4596}}</ref> following the same repeat exercise protocol. However, one pivotal difference between the conditions, which may contribute to the severity of fatigue in CFS/ME, relates to acid homeostasis. '''In contrast to CFS/ME patients, when PBC patients undergo repeat exercise the extent of acidosis within the muscle decreases with each repeated exercise bout.''' This may suggest a compensatory mechanism, which operates to resolve excess acidosis. One potential mechanism that may account for this is increased proton flux and the speed of onset of maximum proton excretion with repeat exercise.<ref name=":1">{{Cite journal|title=Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case-control study|date=2012-02|url=https://pubmed.ncbi.nlm.nih.gov/21749371/|journal=European Journal of Clinical Investigation|volume=42|issue=2|pages=186–194|last=Jones|first=David E. J.|last2=Hollingsworth|first2=Kieren G.|last3=Jakovljevic|first3=Djordje G.|last4=Fattakhova|first4=Gulnar|last5=Pairman|first5=Jessie|last6=Blamire|first6=Andrew M.|last7=Trenell|first7=Michael I.|last8=Newton|first8=Julia L.|doi=10.1111/j.1365-2362.2011.02567.x|pmid=21749371|issn=1365-2362}}</ref><ref name=":0" /> This mechanism also plays a role in mitochondrial disease whereby increased proton efflux postexercise helps to compensate for decreased aerobic capacity.<ref>{{Cite journal|title=Aerobic exercise and muscle metabolism in patients with mitochondrial myopathy|date=2006-04|url=https://pubmed.ncbi.nlm.nih.gov/16372322/|journal=Muscle & Nerve|volume=33|issue=4|pages=524–531|last=Trenell|first=Michael I.|last2=Sue|first2=Carolyn M.|last3=Kemp|first3=Graham J.|last4=Sachinwalla|first4=Toos|last5=Thompson|first5=Campbell H.|doi=10.1002/mus.20484|pmid=16372322|issn=0148-639X}}</ref> Nevertheless, it would appear that in comparison to other conditions that exhibit reduced aerobic capacity and acidosis, CFS/ME patients are unable to compensate for an increased reliance upon anaerobic energy pathways during exercise.<ref name=":1" />"

== References ==
{{Reflist}}

List of ME/CFS studies controlling for deconditioning

2024-05-17T00:03:04Z

Forestglip:Created page

Some major potential confounding factors inherent in research on ME/CFS patients include physical deconditioning and social isolation. This page lists studies which attempt to control for these potential confounders, for example by including a second control group of severely deconditioned people in studies observing biological abnormalities.

== Studies ==

* Understanding Muscle Dysfunction in Chronic Fatigue Syndrome, 2016<ref>{{Cite journal|title=Understanding Muscle Dysfunction in Chronic Fatigue Syndrome|date=2016|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779819/|journal=Journal of Aging Research|volume=2016|pages=2497348|last=Rutherford|first=Gina|last2=Manning|first2=Philip|last3=Newton|first3=Julia L.|doi=10.1155/2016/2497348|pmc=4779819|pmid=26998359|issn=2090-2204}}</ref>
** "Based on the findings the authors suggested that the profound intramuscular acidosis exhibited with repeat exercise to be at least in part related to poor aerobic capacity. This in relation to the physiology of fatigue closely mirrors that observed in patients with the autoimmune disease primary biliary cirrhosis (PBC). '''PBC exhibits a comparable peripheral pattern and a similar level to fatigue to CFS/ME.'''<ref>{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=2010-07|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref> In a study by Hollingsworth and colleagues<ref name=":0">{{Cite journal|title=Loss of capacity to recover from acidosis in repeat exercise is strongly associated with fatigue in primary biliary cirrhosis|date=2010-07|url=https://pubmed.ncbi.nlm.nih.gov/20447719/|journal=Journal of Hepatology|volume=53|issue=1|pages=155–161|last=Hollingsworth|first=Kieren G.|last2=Newton|first2=Julia L.|last3=Robinson|first3=Lisa|last4=Taylor|first4=Roy|last5=Blamire|first5=Andrew M.|last6=Jones|first6=David E. J.|doi=10.1016/j.jhep.2010.02.022|pmid=20447719|issn=1600-0641}}</ref> '''PBC patients exhibited profound and comparable intramuscular acidosis to the CFS/ME patients''' in the Luin et al. study<ref>{{Cite journal|title=Effects of H₂O₂ on electrical membrane properties of skeletal myotubes|date=2011-01-15|url=https://pubmed.ncbi.nlm.nih.gov/21109001/|journal=Free Radical Biology & Medicine|volume=50|issue=2|pages=337–344|last=Luin|first=Elisa|last2=Giniatullin|first2=Rashid|last3=Sciancalepore|first3=Marina|doi=10.1016/j.freeradbiomed.2010.11.015|pmid=21109001|issn=1873-4596}}</ref> following the same repeat exercise protocol. However, one pivotal difference between the conditions, which may contribute to the severity of fatigue in CFS/ME, relates to acid homeostasis. '''In contrast to CFS/ME patients, when PBC patients undergo repeat exercise the extent of acidosis within the muscle decreases with each repeated exercise bout.''' This may suggest a compensatory mechanism, which operates to resolve excess acidosis. One potential mechanism that may account for this is increased proton flux and the speed of onset of maximum proton excretion with repeat exercise.<ref name=":1">{{Cite journal|title=Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case-control study|date=2012-02|url=https://pubmed.ncbi.nlm.nih.gov/21749371/|journal=European Journal of Clinical Investigation|volume=42|issue=2|pages=186–194|last=Jones|first=David E. J.|last2=Hollingsworth|first2=Kieren G.|last3=Jakovljevic|first3=Djordje G.|last4=Fattakhova|first4=Gulnar|last5=Pairman|first5=Jessie|last6=Blamire|first6=Andrew M.|last7=Trenell|first7=Michael I.|last8=Newton|first8=Julia L.|doi=10.1111/j.1365-2362.2011.02567.x|pmid=21749371|issn=1365-2362}}</ref><ref name=":0" /> This mechanism also plays a role in mitochondrial disease whereby increased proton efflux postexercise helps to compensate for decreased aerobic capacity.<ref>{{Cite journal|title=Aerobic exercise and muscle metabolism in patients with mitochondrial myopathy|date=2006-04|url=https://pubmed.ncbi.nlm.nih.gov/16372322/|journal=Muscle & Nerve|volume=33|issue=4|pages=524–531|last=Trenell|first=Michael I.|last2=Sue|first2=Carolyn M.|last3=Kemp|first3=Graham J.|last4=Sachinwalla|first4=Toos|last5=Thompson|first5=Campbell H.|doi=10.1002/mus.20484|pmid=16372322|issn=0148-639X}}</ref> Nevertheless, it would appear that in comparison to other conditions that exhibit reduced aerobic capacity and acidosis, CFS/ME patients are unable to compensate for an increased reliance upon anaerobic energy pathways during exercise.<ref name=":1" />"

Dikoma Shungu

2024-05-16T23:46:50Z

Forestglip:/* Notable studies */ fixed link

[[File:Dikoma_shungu.png|right]]
Dr '''Dikoma C. Shunga''' is a Professor of Physics in Radiology and member of the [[Center for Enervating NeuroImmune Disease]] at Cornell University in New York, the United States. His research focuses on developing advanced magnetic resonance spectroscopy (MRS) and imaging (MRI) methods to apply in clinical and biomedical research. He has used MRS to measure brain lactic acid, the antioxidant glutathione (GSH) and metabolites in [[chronic fatigue syndrome]].<ref>[http://vivo.med.cornell.edu/display/cwid-dcs7001 Weill Cornell Medical College; Dikoma Shungu]</ref>. His work has been funded by the [[NIH]] and the [[Solve ME/CFS Initiative]].

==ME/CFS research==
===Raised lactic acid and lowered glutathone levels in the brain===

In a series of three studies, Prof Shungu found high levels of [[lactic acid]] in ventricular [[cerebrospinal fluid]] and significant correlation between lactic acid levels and the severity of mental fatigue in ME/CFS patients. He later went on to discover levels of the antioxidant [[glutathione]] (GSH) reduced by 36% in brain tissue<ref name="Shungu2012" /> and suggested [[oxidative stress]] was playing a role in ME/CFS.

===Supplementation with N-Acetylcysteine===

At the 2016 IACFS/ME confernce Dr Shungu presented evidence that supplementing patients with [[N-acetylcysteine]] (NAC) raised levels of glutathione in the brains of patients and their symptoms were improved.<ref>{{Cite web | url=
http://iacfsme.org/ME-CFS-Primer-Education/News/IACFSME-2016-Program.aspx|url-status=dead|archive-url=https://www.healthrising.org/forums/threads/nac-for-neuroinflammation-in-me-cfs-and-fibromyalgia.5046/post-26022|archive-date=2016-11-21 | title = N-Acetylcysteine Alleviates Cortical Glutathione Deficit and Improves Symptoms in CFS: An In Vivo Validation Study using Proton Magnetic Resonance Spectroscopy | first = N. | last = Weiduschat | first2 = X. | last2 = Mao | first3 =D. | last3 = Vub | first4 = M. | last4 = Blate | first5 = G. | last5 = Kang | first6 = H.S. | last6 = Mangat | first7 = A. | last7 = Artis | first8 = S. | last8 = Banerjee | first9 = G. | last9 = Lange | first10 = C. | last10 = Henchcliff | first11 = B.H. | last11 = Natelson | first12 =D.C. | last12 = Shungu|work=IACFS/ME Syllabus | date = 2016 | page=35}}</ref>

In late 2020, Dikoma Shungu registered a randomized clinical trial to determine the effects of [[N-acetylcysteine|NAC]] supplementation on ME/CFS patients with low glutathione levels, especially investigating any change in glutathione levels and oxidative stress.<ref name="NCT04542161">{{Cite web | url = https://clinicaltrials.gov/ct2/show/NCT04542161 | title = Assessment of N-Acetylcysteine as Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrom | last = | first = | authorlink = | date = | website = clinicaltrials.gov|language=en| archive-url = | archive-date = |url-status = | access-date=2020-09-11}}</ref>

==Notable studies ==
*2022, Plasma metabolomics reveals disrupted response and recovery following maximal exercise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name="ArnaudPlasma2022">{{Cite journal | title = Plasma metabolomics reveals disrupted response and recovery following maximal exercise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2022-03-31 | url = https://insight.jci.org/articles/view/157621|journal=JCI Insight|volume=|issue=| pages = | last = Germain | first = Arnaud | authorlink = Arnaud Germain | last2 = Giloteaux | first2 = Ludovic | authorlink2 = Ludovic Giloteaux | last3 = Moore | first3 = Geoffrey E. | authorlink3 = | last4 = Levine | first4 = Susan M. | authorlink4 = Susan Levine | last5 = Chia | first5 = John K. | author-link5 = John Chia | last6 = Keller | first6 = Betsy A. | author-link6 = Betsy Keller | last7 = Stevens | first7 = Jared | last8 = Franconi | first8 = Carl J. | last9 = Mao | first9 = Xiangling | last10 = Shungu | first10 = Dikoma C. | author-link10 = Dikoma Shungu | last11 = Grimson | first11 = Andrew|language=en|doi=10.1172/jci.insight.157621|pmc=|pmid=|access-date=|issn=0021-9738|quote=|via=}}</ref> - [https://insight.jci.org/articles/view/157621/pdf (Full text)]
*2008, Assessment of GABA and Glutamate/Glutamine at 3.0 T in Chronic Fatigue Syndrome, Major Depressive Disorder and Healthy Volunteers - [https://cds.ismrm.org/protected/09MProceedings/PDFfiles/03457.pdf (Full text)]
*2008, Ventricular cerebrospinal fluid lactate is increased in CFS compared with generalized anxiety disorder: an in vivo 3.0 T <sup>1</sup>H MRS imaging study<ref name="Mathew2008">{{Cite journal | last = Mathew | first = Sanjay J. | authorlink = | last2 = Mao | first2 = Xiangling | authorlink2 = | last3 = Keegan | first3 = Kathryn A. | authorlink3 = | last4 = Levine | first4 = Susan M. | authorlink4 = Susan Levine | last5 = Smith | first5 = Eric L. P. | author-link5 = | last6 = Heier | first6 = Linda A. | author-link6 = | last7 = Otcheretko | first7 = Viktor | last8 = Coplan | first8 = Jeremy D. | last9 = Shungu | first9 = Dikoma C. | date = 2009 | title = Ventricular cerebrospinal fluid lactate is increased in chronic fatigue syndrome compared with generalized anxiety disorder: an in vivo 3.0 T 1H MRS imaging study | url = https://onlinelibrary.wiley.com/doi/abs/10.1002/nbm.1315|journal=NMR in Biomedicine|language=en|volume=22|issue=3 | pages = 251–258|doi=10.1002/nbm.1315|issn=1099-1492|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.researchgate.net/profile/Dikoma_Shungu/publication/23403524_Ventricular_cerebrospinal_fluid_lactate_is_increased_in_chronic_fatigue_syndrome_compared_with_generalized_anxiety_disorder_An_in_vivo_30_T_1H_MRS_imaging_study/links/5ce01a0c458515712eb41f0d/Ventricular-cerebrospinal-fluid-lactate-is-increased-in-chronic-fatigue-syndrome-compared-with-generalized-anxiety-disorder-An-in-vivo-30-T-1H-MRS-imaging-study.pdf (Full text)]
*2010, Increased ventricular lactate in CFS measured by <sup>1</sup>H MRS imaging at 3.0 T. II: comparison with major depressive disorder<ref name="Murrough2010">{{Cite journal | last = Murrough | first = James W. | authorlink = | last2 = Mao | first2 = Xiangling | authorlink2 = | last3 = Collins | first3 = Katherine A. | authorlink3 = | last4 = Kelly | first4 = Chris | authorlink4 = | last5 = Andrade | first5 = Gizely | author-link5 = | last6 = Nestadt | first6 = Paul | author-link6 = | last7 = Levine | first7 = Susan M. | author-link8 = Susan Levine | last8 = Mathew | first8 = Sanjay J. | author-link8 = Sanjay Mathew | last9 = Shungu | first9 = Dikoma C. | date = 2010 | title=Increased ventricular lactate in chronic fatigue syndrome measured by 1H MRS imaging at 3.0 T. II: comparison with major depressive disorder |url =https://onlinelibrary.wiley.com/doi/abs/10.1002/nbm.1512|journal=NMR in Biomedicine|language=en|volume=23|issue=6 | pages = 643–650|doi=10.1002/nbm.1512|issn=1099-1492|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.researchgate.net/profile/Dikoma_Shungu/publication/45367480_Increased_ventricular_lactate_in_chronic_fatigue_syndrome_measured_by_1H_MRS_imaging_at_30_T_II_Comparison_with_major_depressive_disorder/links/5d3d92ac92851cd0468cb655/Increased-ventricular-lactate-in-chronic-fatigue-syndrome-measured-by-1H-MRS-imaging-at-30-T-II-Comparison-with-major-depressive-disorder.pdf (Full text)]
*2012, Increased ventricular lactate in chronic fatigue syndrome. III. Relationships to cortical glutathione and clinical symptoms implicate oxidative stress in disorder pathophysiology<ref name="Shungu2012">{{Cite journal | last = Shungu | first = Dikoma C. | authorlink = | last2 = Weiduschat | first2 = Nora | authorlink2 = | last3 = Murrough | first3 = James W. | authorlink3 = | last4 = Mao | first4 = Xiangling | authorlink4 = | last5 = Pillemer | first5 = Sarah | author-link5 = | last6 = Dyke | first6 = Jonathan P. | author-link6 = | last7 = Medow | first7 = Marvin S. | author-link7 = | last8 = Natelson | first8 = Benjamin H. | author-link8 = Benjamin Natelson | last9 = Stewart | first9 = Julian M. | author-link9 = Julian Stewart | date = Sep 2012 | title = Increased ventricular lactate in chronic fatigue syndrome. III. Relationships to cortical glutathione and clinical symptoms implicate oxidative stress in disorder pathophysiology | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896084/|journal=NMR in biomedicine|volume=25|issue=9 | pages = 1073–1087|doi=10.1002/nbm.2772|issn=0952-3480|pmc=3896084|pmid=22281935|access-date=|quote=|via=}}</ref> - [https://onlinelibrary.wiley.com/doi/abs/10.1002/nbm.2772 (Full text)]
*2017, Elevations of ventricular lactate levels occur in both [[chronic fatigue syndrome]] and [[fibromyalgia]]<ref name="Natelson,Vu 2017">{{Citation | last1 = Natelson | first1 = Benjamin | author-link1 = Benjamin Natelson | last2 = Vu | first2 = Diana| authorlink2 = | last3 = Coplan | first3 = JeremyD. | authorlink3 = | last4 = Mao | first4 = Xiangling | authorlink4 = | last5 = Blate | first5 = Michelle | author-link5 = | last6 = Kang | first6 = Guoxin | author-link6 = | last7 = Soto | first7 = Eli | author-link7 = | last8 = Tolga Kapusuz | first8 = Tolga | author-link8 = | last9 = Shungu | first9 = Dikoma | title = Elevations of ventricular lactate levels occur in both chronic fatigue syndrome and fibromyalgia | journal =Fatigue: Biomedicine, Health & Behavior | volume = 5 | issue = 1 | page = 15-20 | date = 2017 | pmid = 29308330 | pmc = 5754037 | doi = 10.1080/21641846.2017.1280114 }}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5754037/ (Full text)]
*2017, Multimodal and simultaneous assessments of [[brain]] and spinal fluid abnormalities in [[chronic fatigue syndrome]] and the effects of psychiatric comorbidity<ref name="Natelson, 2017">{{Citation | last1 = Natelson | first1 = Benjamin | author-link1 = Benjamin Natelson | last2 = Mao | first2 = Xiangling | authorlink2 = | last3 = Stegner | first3 = Aaron J | authorlink3 = | last4 = Lange | first4 = Gudrun | authorlink4 = Gudrun Lange | last5 = Vu | first5 = Diana | author-link5 = | last6 = Blate | first6 = Michelle | author-link6 = | last7 = Kang | first7 = Guoxin | author-link7 = | last8 = Soto | first8 = Eli | author-link8 = | last9 = Kapusuz | first9 = Tolga | author-link9 = | last10 = Shungu | first10 = Dikoma C | author-link10 = | title = Multimodal and simultaneous assessments of brain and spinal fluid abnormalities in chronic fatigue syndrome and the effects of psychiatric comorbidity | journal = Journal of the Neurological Sciences | volume = 375 | issue = | page = 411-416 | date = 2017 | pmid = | doi = 10.1016/j.jns.2017.02.046 }}</ref> - [https://pdfs.semanticscholar.org/237f/2e4cd4618a59ba76943c8441c01de7866f7c.pdf (Full Text)]

==Online presence==
*[http://vivo.med.cornell.edu/display/cwid-dcs7001 Weill Cornell Medical College: Dikoma Shungu]
*[https://www.ncbi.nlm.nih.gov/pubmed/?term=Shungu%20DC%5BAuthor%5D&cauthor=true&cauthor_uid=24749063 PubMed: Dikoma Shungu]

==Learn more==
*[http://www.healthrising.org/blog/2013/03/10/your-brain-on-view-big-nih-chronic-fatigue-syndrome-grant/ Health Rising: Brain on Fire (October 2013)]
*[http://solvecfs.org/new-2-million-cfs-grant-awarded-to-dr-dikoma-shungu-team/ Solve ME/CFS Initiative: New $2 million CFS grant awarded to Dr Dikoma Shungu team]

==See also==
*[[Center for Enervating NeuroImmune Disease]]
*[[N-acetylcysteine]]
*[[Solve ME/CFS Initiative]]

==References==
{{Reflist}}

[[Category:Researchers]]
[[Category:US researchers]]
<references />

Primer for doctors and researchers

2024-05-15T16:26:27Z

Forestglip:fixed typo

{{mbox|text= Editors: Edits to this Primer may require the same edits to the other [[:Category:Primers|Primers]].}}
[[Chronic Fatigue Syndrome|Chronic fatigue syndrome]] (CFS) is also known as [[myalgic encephalomyelitis]] (ME) or [[ME/CFS]]. There are many [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome| clinical and research definitions]], which creates confusion for doctors, researchers, and patients.

It is worth noting that [[chronic fatigue]] (without the "syndrome") is not a disease in and of itself, but a symptom of many diseases and drug therapies. This term is not interchangeable with [[Chronic fatigue syndrome|CFS]], [[Myalgic encephalomyelitis|ME]], or [[ME/CFS]].
<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="''What is ME/CFS'' By Open Medicine Foundation - OMF. Linda Tannenbaum, Founder & CEO/President, talks about ME/CFS and how OMF is leading research and delivering hope (2018)">https://www.youtube.com/watch?v=pqDubEeIBtA</embedvideo>

The core [[List of symptoms in ME CFS|ME/CFS symptoms]] are: [[chronic fatigue]] (CF); [[post-exertional malaise]] (PEM); [[unrefreshing sleep]]/[[Sleep dysfunction|sleep problems]]; and [[Cognitive dysfunction|cognitive impairment]]/[[brain fog]] and/or [[orthostatic intolerance]] (OI).<ref name="CDC-symptoms">{{Cite web | title = Symptoms of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-01-22|language=en-us}}</ref><ref name="IOM2015-clinicians">{{Cite web|url=https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness {{!}} Clinicians' Guide | last = | first = | date = 2015 | website = National Academies|archive-url=|archive-date=|access-date= | authorlink = | pages = 9-10}}</ref> A person with ME is likely to have other symptoms as well.<ref name="whatis" /> [[Systemic Exertion Intolerance Disease]] (SEID), an ME/CFS criteria, allows for a patient to be [[Systemic Exertion Intolerance Disease#Diagnostic criteria|diagnosed with the minimum core symptoms]] <ref name="DiagnosticAlgorithm">{{Cite web|url=http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_DiagnosticAlgorithm | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - Diagnostic Algorithm | last = | first = | authorlink = | date = 2015 | website = nationalacademies.org|archive-url=|archive-date=|access-date=}}</ref><ref name="IOM2015-clinicians" />. The [[Canadian Consensus Criteria]] (CCC) requires the core symptoms along with additional [[Nervous system|neurological]], [[Autonomic nervous system|autonomic]], [[Neuroendocrine system|neuroendocrine]], and [[immune system|immune]] symptoms.<ref name="Carruthers, 2003">{{Cite journal | last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers | last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson | last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas | last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner | last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested | last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry | last9 = Joshi | first9 = Pradip | authorlink9 = Pradip Joshi | last10 = Powles | first10 = AC Peter | authorlink10 = A C Peter Powles | last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey | last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols | journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | pages = 7-115 | date = 2003 | pmid = | doi = 10.1300/J092v11n01_02
| url = http://phoenixrising.me/wp-content/uploads/Canadian-definition.pdf }}</ref> The [[International Consensus Criteria]] (ICC) is used to diagnose [[myalgic encephalomyelitis]] (ME) which requires the core symptoms and neurological, immune/[[Gastrointestinal system|gastrointestinal]]/genitourinary impairment, and [[Portal:Energy metabolism|energy metabolism]]/[[Ion transportation|ion transport]] impairment [[International Consensus Criteria#Criteria|symptoms for a diagnosis]].<ref name="ICC2011criteria">{{Cite journal | last = Carruthers | first = Bruce M. | author-link = Bruce Carruthers | last2 = van de Sande | first2 = Marjorie I. | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Klimas | first4 = Nancy G. | author-link4 = Nancy Klimas | last5 = Broderick | first5 = Gordon | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = Terry | authorlink6 = Terry Mitchell | last7 = Staines | first7 = Donald | author-link7 = Donald Staines | last8 = Powles | first8 = A.C. Peter | author-link8 = A C Peter Powles | last9 = Speight | first9 = Nigel | authorlink9 = Nigel Speight | last10 = Vallings | first10 = Rosamund | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = Lucinda | authorlink11 = Lucinda Bateman | last12 = Baumgarten-Austrheim | first12 = Barbara | authorlink12 = Barbara Baumgarten-Austrheim | last13 = Bell | first13 = David | author-link13 = David Bell | last14 = Carlo-Stella | first14 = Nicoletta | author-link14 = Nicoletta Carlo-Stella | last15 = Chia | first15 = John | author-link15 = John Chia | last16 = Darragh | first16 = Austin | author-link16 = Austin Darragh | last17 = Jo | first17 = Daehyun | author-link17 = Daehyun Jo | last18 = Lewis | first18 = Donald | author-link18 = Donald Lewis | last19 = Light | first19 = Alan | author-link19 = Alan Light | last20 = Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21 = Mena | first21 = Ismael | author-link21 = Ismael Mena | last22 = Mikovits | first22 = Judy | author-link22 = Judy Mikovits | last23 = Miwa | first23 = Kunihisa | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = Modra | author-link24 = Modra Murovska | last25 = Pall | first25 = Martin | author-link25 = Martin Pall | last26 = Stevens | first26 = Staci | author-link26 = Staci Stevens | date = 2011-08-22 | title=Myalgic encephalomyelitis: International Consensus Criteria|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.2011.02428.x|journal=Journal of Internal Medicine|language=en|volume=270|issue=4|pages=327–338|doi=10.1111/j.1365-2796.2011.02428.x|issn=0954-6820|pmc=3427890|pmid=21777306|via=}}</ref>

Although the [[Fukuda criteria|Fukuda]]<ref name="fukuda1994">{{Cite journal | last = Fukuda | first = K. | author-link = Keiji Fukuda | last2 = Straus | first2 = S.E. | authorlink2 = Stephen Straus | last3 = Hickie | first3 = I. | authorlink3 = Ian Hickie | last4 = Sharpe | first4 = M.C. | authorlink4 = Michael Sharpe | last5 = Dobbins | first5 = J.G. | authorlink5 = James Dobbins | last6 = Komaroff | first6 = A. | authorlink6 = Anthony Komaroff | date = 1994-12-15 | title = The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group | url = https://www.researchgate.net/profile/Michael_Sharpe2/publication/247808895_The_Chronic_Fatigue_Syndrome_A_Comprehensive_Approach_to_Its_Definition_and_Study/links/0c96053201643bfc4b000000/The-Chronic-Fatigue-Syndrome-A-Comprehensive-Approach-to-Its-Definition-and-Study.pdf|journal=Annals of Internal Medicine|volume=121|issue=12 | pages = 953–959|issn=0003-4819|pmid=7978722|via=|doi=10.7326/0003-4819-121-12-199412150-00009|publisher=American College of Physicians}}</ref> and the [[Oxford criteria|Oxford Criteria]]<ref name=":02">{{Cite journal | last = Sharpe | first = M C | last2 = Archard | first2 = L C | last3 = Banatvala | first3 = J E | last4 = Borysiewicz | first4 = L K | last5 = Clare | first5 = A W | last6 = David | first6 = A | last7 = Edwards | first7 = RH | last8 = Hawton | first8 = KE | last9 = Lambert | first9 = HP | date = Feb 1991 | title = A report--chronic fatigue syndrome: guidelines for research.|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/|journal=Journal of the Royal Society of Medicine|volume=84|issue=2|pages=118–121|issn=0141-0768|pmc=1293107|pmid=1999813}}</ref> have been used for diagnosing CFS, they are broader criteria, making [[misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome|misdiagnosis]] a concern.<ref>[http://arthritis.about.com/od/fatigue/f/chronicfatigue.htm Chronic Fatigue Versus Chronic Fatigue Syndrome - About.com Health - By: Carol Eustice]</ref><ref>{{Cite web|url=https://www.meadvocacy.org/what_does_a_true_me_definition_look_like | title = What Does a True ME Definition Look Like? | last = | first = |website=MEadvocacy.org|access-date=2019-01-25}}</ref><ref name="fukuda1994" /><ref>[http://theargusreport.com/us-nih-report-calls-uk-definition-mecfs-scrapped/ US NIH Report Calls for UK Definition of ME/CFS to be Scrapped - The Argus Report By: Penny Swift]</ref><ref>{{Cite web|url=http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/ | title = AHRQ Evidence Review Changes Its Conclusions | last = Spotila | first=Jennie | authorlink=Jennie Spotila | last2 = Dimmock | first2 = Mary | authorlink2 = Mary Dimmock | date = 2016-08-16 | website = occupyme.net|archive-url=|archive-date=|access-date=2019-01-25}}</ref> There have been media reports of athletes diagnosed with [[myalgic encephalomyelitis]] (ME) or [[chronic fatigue syndrome]] (CFS) who have recovered in a relatively short period of time after rest, supplementation, and diet changes;<ref name=":7">{{Cite news |url = https://inews.co.uk/news/health/marathon-runner-quit-work-me-cfs-diet-change/ | title = Marathon runner forced to quit work after developing ME claims diet change gave him his life back | first = Claudia | last = Tanner|publisher =iNews | date = 2018}}</ref><ref name=":8">{{Cite news | url=https://www.thetimes.co.uk/article/muslim-fighter-with-me-who-left-an-arranged-marriage-to-win-world-title-svxhhzt57 | title = Muslim fighter with ME who left an arranged marriage to win world | last = Broadbent | first = Rick | date = 2017-12-02|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref><ref name=":9">{{Cite news | url=http://www.abc.net.au/7.30/committee-reviews-potentially-harmful-and-old/10010408 |at=6mins 18s| title = Committee reviews 'potentially harmful and old fashioned' chronic fatigue treatments|publisher=ABC News | first =Andy|last = Park | first2 = Clare | last2 = O'Halloran}}</ref><ref name=":10">{{Cite news | url=https://www.thetimes.co.uk/article/nathan-douglas-london-2012-was-the-darkest-period-of-my-life-vxt5gftcx | title = Nathan Douglas: London 2012 was the darkest period of my life | last = Broadbent | first = Rick | date = 2019-02-27|work=The Times|access-date=2019-02-28|archive-url=|archive-date=|language=en|issn=0140-0460|quote=}}</ref> these athletes may have had [[overtraining syndrome]] (which has the symptom of CF) and not ME or CFS.<ref name="spence">{{Cite web | last = Spence | first = Vance | authorlink = Vance Spence|website=Irish M.E. Association| title = Snippets {{!}} A presentation by MERGE Chairman Dr Vance Spence on 12 November 2005 at the Oak Tree Court Conference Centre, Coventry, at the invitation of the Warwickshire Network for ME|url = https://www.imet.ie/imet_website/snippets/7th_december_2005_snippets.html}}</ref> Some people with [[anemia]], [[allergy|allergies]], [[idiopathic chronic fatigue]] or [[:Category:Potential comorbidities|other fatiguing illnesses]] are erroneously diagnosed with CFS.<ref name="Carruthers, 2003" />

The acronym ME/CFS is widely used in research, by clinicians, patient organizations, and patients.

"The most common overlapping condition with ME/CFS is [[fibromyalgia]]."<ref name=":30">{{Cite web|url=https://ammes.org/overlapping-conditions/ | title = Overlapping Conditions - American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society | last = | first = | date = |website=[[American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society]]|language=en-US|archive-url=|archive-date=|access-date=2018-08-12}}</ref><ref name=":31">{{Cite journal | last= Jason | first = Leonard | last2 = Taylor | first2 = R.R. | last3 = Kennedy | first3 = C.L. | last4 = Song | first4 = S | last5 = Johnson | first5 = D | last6 = Torres | first6 = S.R. | date = 2001-01-01 | title = Chronic fatigue syndrome: Comorbidity with fibromyalgia and psychiatric illness|url=https://www.researchgate.net/publication/285787383_Chronic_fatigue_syndrome_Comorbidity_with_fibromyalgia_and_psychiatric_illness|journal=Medicine and Psychiatry|volume=4|pages=29–34}}</ref> While some have posited ME/CFS and fibromyalgia are variants of the same illness, [[Benjamin Natelson]], MD summoned considerable amounts of data that suggest the two illnesses differ with different pathophysiologic processes leading to different treatments.<ref>{{Cite journal | last = Natelson | first = Benjamin H. | date = 2019-02-19 | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia: Definitions, Similarities, and Differences|url=https://www.clinicaltherapeutics.com/article/S0149-2918(19)30003-7/abstract|journal=Clinical Therapeutics|language=English|volume=41|issue=4 | pages = 612|doi=10.1016/j.clinthera.2018.12.016|issn=0149-2918|pmid=30795933}}</ref>

Unfortunately, a psychiatric approach has been taken with ME/CFS, but this is changing. At this time there are no approved drug treatments. [[Graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) are used in the [[United Kingdom|UK]] inappropriately for treating ME/CFS. As of 2021 the GET has been scrapped in the UK [https://www.theguardian.com/society/2021/oct/29/health-watchdog-nice-publishes-delayed-me-guidance].

The [[Centers for Disease Control and Prevention]] (CDC) website states "ME/CFS is a '''biological illness''', not a psychologic disorder" and impacts multiple body systems.<ref name="etiology" /> The CDC recognizes the hallmark symptom of PEM which is a worsening of symptoms after physical or mental activity<ref name="CDC-symptoms" /> and says [[ME/CFS]] is a "disabling and complex disease."<ref name="what-is">{{Cite web|url=https://www.cdc.gov/me-cfs/about/index.html | title = What is ME/CFS? {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-04-12}}</ref>

[[File:SEID algorithm.JPG|thumb|right|Diagnostic Algorithm for [[Systemic Exertion Intolerance Disease|SEID]]'s minimum [[List of symptoms in ME CFS#Systemic Exertion Intolerance Disease (SEID) symptom list|ME/CFS core symptoms]]]]

== Disease onset and course of illness==
[[Onset of ME/CFS|ME/CFS can begin]] from many acute/sudden<ref name="Chu2019">{{Cite journal | last = Chu | first = Lily | authorlink = Lily Chu | last2 = Valencia | first2 = Ian J. | authorlink2 = Ian Valencia | last3 = Garvert | first3 = Donn W. | authorlink3 = | last4 = Montoya | first4 = Jose G. | authorlink4 = Jose Montoya | authorlink5 = | date = Jan 14, 2019 | title = Onset patterns and course of myalgic encephalomyelitis/chronic fatigue syndrome|url=https://www.frontiersin.org/articles/10.3389/fped.2019.00012/abstract|journal=Frontiers in Pediatrics|volume=|issue=|pages=|doi=10.3389/fped.2019.00012|quote=|via=}}</ref> events: usually [[Viral onset hypothesis|viral]] or [[Bacterial disease onset|bacterial]] infections, but also [[trauma]], surgery or childbirth, [[allergies|allergic reaction]], and [[stress]].<ref>{{Cite web|url=https://www.cdc.gov/grand-rounds/pp/2016/20160216-presentation-chronic-fatigue-H.pdf | title = CDC Public Health Grand Rounds - Chronic Fatigue Syndrome - Advancing Research and Clinical Education | last = | first = | authorlink = | date = |website=cdc.gov | page = 6|archive-url=|archive-date=|access-date=}}</ref> There is also a gradual onset in some people,<ref name="Chu2019" /><ref name="CDC-pres">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/index.html | title = Presentation and Clinical Course of ME/CFS {{!}} Information for Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS | date = 2018-12-12 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-02-07}}</ref> that is not attributed to any one event. Occasionally, ME/CFS has been triggered by [[Environmentally acquired illness|environmental toxins]] or the receipt of an [[Vaccine|immunizing injection]].<ref>[https://www.masscfids.org/images/pdf/Primer_2014.pdf Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc]</ref> Some say that the disease [[Myalgic encephalomyelitis|ME]] always has an acute/sudden [[Infection|infectious]] onset.<ref name="Evans2018">{{Cite journal | last = Evans | first = Meredyth | authorlink = Meredyth Evans | last2 = Jason | first2 = Leonard | author-link2 = Leonard Jason | date = 2018 | title=Onset patterns of chronic fatigue syndrome and myalgic encephalomyelitis|url=https://www.openaccessjournals.com/articles/Onset%20patterns%20of%20chronic%20fatigue%20syndrome%20and%20myalgic%20encephalomyelitis.pdf|journal=Research on Chronic Diseases|volume=|issue=|pages=2|quote=|via=}}</ref>

The disease [[ME/CFS]] is often diagnosed when a person does not recover from a [[flu-like illness]], [[mononucleosis]] or another [[HHV|herpesvirus]], [[Q fever]], an unidentified [[virus]], or [[:Category:Infectious agents|other infection]], and meets one or more [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome|diagnostic criteria for either ME, CFS, or ME/CFS]].<ref>[https://www.nap.edu/read/19012/chapter/7#157 IOM Report - INFECTION]</ref><ref>[http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/ The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014]</ref> Patients experience [[List of symptoms in ME CFS|numerous symptoms]] and disease severity which fluctuate from day to day, week to week, month to month, year to year, and even decade to decade. Furthermore, symptoms and disease severity vary among patients.<ref>[http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/ Symptoms and diagnosis of ME/CFS - ME Association]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://phoenixrising.me/mecfs-basics/chronic-fatigue-syndrome-mecfs-facts-chronic-fatigue-syndrome-is-2 Facts (ME/CFS) Severity]</ref>

The CDC recognizes that there can be different causes and it is possible that two or more things could cause the illness. Areas of research include infections, [[immune system]] changes, [[stress]] affecting body chemistry, changes in [[Metabolic|energy production]], and a possible [[Genetics of chronic fatigue syndrome|genetic link]].<ref name="CDC-causes">{{Cite web | title = Possible Causes {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)|url=https://www.cdc.gov/me-cfs/about/possible-causes.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-01-27|language=en-us}}</ref><ref name="etiology" /> The CDC notes there are abnormalities with the immune system, [[Metabolic|cellular metabolism]], neuroendocrine disturbances, and [[blood pressure]] or heart rate regulation.<ref name="etiology" />
=== Not a mental health disorder ===
In the past, CFS was believed to be a mental health disorder. This is why the CDC now states: "ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems."<ref name="etiology" />

===No clear evidence that ME/CFS is contagious===
[[:Category:Infectious agents|Infectious episodes]] have led to [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|outbreaks]] over the years and 72% of ME/CFS patients report an [[Onset of ME/CFS|onset]] of a viral or bacterial infection.<ref>{{Cite web|url=https://www.cdc.gov/grand-rounds/pp/2016/20160216-presentation-chronic-fatigue-H.pdf | title = CDC Public Health Grand Rounds - Chronic Fatigue Syndrome - Advancing Research and Clinical Education | last = | first = | authorlink = | date = |website=CDC | page = 6|archive-url=|archive-date=|access-date=}}</ref> Nowadays, the vast majority of ME/CFS cases are sporadic rather than epidemic, and although some outbreaks have been caused by known viruses - such as the [[2003 Hong Kong outbreak|SARS pandemic]] and [[2019 Coronavirus pandemic outbreak|COVID-19]] - there is no clear evidence that sporadic ME/CFS cases are contagious.<ref name="pediatricprimer">{{Cite journal | last = Rowe | first = Katherine S. | last2 = Vallings | first2 = Rosamund | last3 = Stewart | first3 = Julian M. | last4 = Speight | first4 = Nigel | last5 = Schwartz | first5 = Malcolm S. | last6 = Medow | first6 = Marvin S. | last7 = Gurwitt | first7 = Alan | last8 = Friedman | first8 = Kenneth J. | last9 = Underhill | first9 = Rosemary A. | date = 2017 | title=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer |url = https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full|journal=Frontiers in Pediatrics|language=English|volume=5|doi=10.3389/fped.2017.00121|issn=2296-2360}}</ref>

Families, partners, and friends do not report contracting ME/CFS from someone with the disease nor do patients report passing it on to others.<ref>{{Cite web|url=http://forums.prohealth.com/forums/index.php?threads/is-cfs-contagious.189664/ | title = Is CFS contagious? {{!}} ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums|website=forums.prohealth.com|access-date=2019-02-13}}</ref> However, Underhill and O'Gorman (2006) researched 219 patients with ME/CFS, and concluded that close household contact and genetics were both risk factors for CFS, finding 3.2% of spouses/partners of those with CFS also had the illness.<ref name="UnderhillInfectious">{{Cite journal | last = Underhill | first = Rosemary A. | last2 = O'Gorman | first2 = Ruth | date = 2006-01-01 | title = Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients|url=https://doi.org/10.1300/J092v13n01_02|journal=Journal of Chronic Fatigue Syndrome|volume=13|issue=1|pages=3–13|doi=10.1300/J092v13n01_02|issn=1057-3321}}</ref> This was a higher prevalence than all genetic relatives except children of patients. Because ME/CFS can run in families, a [[Genetics of chronic fatigue syndrome|genetic link]] is a line of research recommended by the CDC.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/about/possible-causes.html | title = Possible Causes {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-02-13}}</ref><br />

[[Michael Sikora]] and collaborators at the [[Open Medicine Foundation]] hope that their research on the role of [[T cell]]s and immune-related [[Genetics of chronic fatigue syndrome|genes]] will help address "whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system".<ref name="omf-funded">{{Cite web|url=https://www.omf.ngo/2018/06/04/omf-funded-research/ | title = OMF funded research | date = Jun 4, 2018 | website = [[Open Medicine Foundation]]}}</ref>
====Blood donation and organ transplant====
Patients with ME/CFS are banned from [[Blood donation|donating blood]] or tissues in the [[United Kingdom|UK]] by the UK's [[National Health Service]], including patients who have recovered.<ref name="Blood">{{Cite web|url=https://my.blood.co.uk/knowledgebase/Index/C | title = My Donor Record - Health, Eligibility & Travel|website=my.blood.co.uk|access-date=2021-04-01}}</ref><ref>{{Cite web|url=https://transfusionguidelines.org.uk/ | title = Joint United Kingdom (UK) Blood Transfusion and Tissue Transplantation Services Professional Advisory Committee - Transfusion Guidelines | last = Target Information Systems Ltd|website=transfusionguidelines.org.uk|language=en|access-date=2021-04-01}}</ref>
In the [[United States]] a temporary ban on donations from ME/CFS patients was put in place due to the research of [[Xenotropic murine leukemia virus-related virus|XMRV]] as being the infectious trigger of CFS<ref name="PostRedCross2010" /><ref>{{Cite web|url=https://www.meassociation.org.uk/2010/04/xmrv-testing-in-the-uk/ | title = XMRV testing in the UK | last = | first = | authorlink = | date = 2010 | website = ME Association|language=en-US|archive-url=|archive-date=|access-date=2019-02-13}}</ref> and that patients carried the virus.<ref name="PostRedCross2010">{{Cite news | url=http://voices.washingtonpost.com/checkup/2010/12/red_cross_bars_chronic_fatique.html | title = Red Cross bars chronic fatigue patients from donating blood | last = Stein | first = Rob | authorlink = | date = Dec 3, 2010|publisher=Washington Post|archive-url=|archive-date=|access-date=}}</ref> Two papers on XMRV were retracted as it was a laboratory contamination.<ref name="Redaction2012">{{Cite journal | date = Dec 2012 | title = Redaction, retraction and reaction|url=https://www.nature.com/articles/nrmicro2928|journal=Nature Reviews Microbiology|language=en|volume=10|issue=12 | pages = 799|doi=10.1038/nrmicro2928|issn=1740-1534}}</ref><ref name="TN2012">{{Cite web|url=https://transfusionnews.com/2012/10/05/multicenter-study-finds-no-correlation-between-chronic-fatigue-syndrome-and-xmrv/ | title = Multicenter Study Finds No Correlation between Chronic Fatigue Syndrome and XMRV|website=transfusionnews.com|access-date=2019-02-13}}</ref> Currently the US American Red Cross no longer have statements barring transfusions or transplants from ME/CFS patients, but patients are expected to be in "good health" which would exclude most.<ref name="RedCross">{{Cite web|url=https://www.redcrossblood.org/faq.html#eligibility-health|access-date=2019-02-13 | title = Frequently Asked Questions | date = | last = | first = | authorlink = |archive-url=|archive-date=|website=American Red Cross|quote=Your search for "Chronic fatigue syndrome" returned no results.}}</ref> Patient charities discouraged ME/CFS patients from donating blood,<ref name="MassBlood2015">{{Cite web |url=https://www.massmecfs.org/research/recent-research/19-xmrv/237-aabbs-recommendation-on-cfidsme-and-blood-donation | title = AABB's recommendation on ME/CFS and blood donation | date = Nov 25, 2015 |website=[[Massachusetts ME/CFS & FM Association]]}}</ref> but the American Association of Blood Banks advises to either accept or defer donors based on "clinical judgment of the donor's health status".<ref name="AABBOct2012">{{Cite web | last = American Association of Blood Banks | url=https://www.aabb.org/docs/default-source/default-document-library/regulatory/eid/xmrvfactsheet.pdf?sfvrsn=cd162fa3_2 | date = October 2012 | title = Xenotropic Murine Leukemia Virus-Related Virus (XMRV) and other Polytropic Murine Leukemia Viruses (pMLV) |pages = 3 |quote=An updated AABB Association Bulletin #12-05 (November 2012) states that individual collectors of blood and cellular therapy products should accept or defer donors with a history of CFS based on their clinical judgment of the donor's health status.}}</ref>

[[New Zealand]] bans blood donation from anyone with ME/CFS.<ref name="NZBlood">{{Cite web |url = https://www.nzblood.co.nz/become-a-donor/am-i-eligible/detailed-eligibility-criteria/ | title = Detailed Eligibility Criteria|access-date=2022-05-25 | date = |website=NZ Blood|quote=People with a diagnosis of Chronic Fatigue Syndrome are permanently ineligible from donating blood in New Zealand}}</ref> [[Australia]] has a prohibition on blood donation as a precaution because it has not been established if ME/CFS could be caused by a transmissible infection.<ref name="AusBloodDonation">https://www.lifeblood.com.au/faq/eligibility/medical-conditions-and-procedures/chronic-fatigue-syndrome</ref>

== Mini-Docs ==
<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Jen Brea/TED (2016)">https://www.youtube.com/watch?v=Fb3yp4uJhq0</embedvideo>
[[What happens when you have a disease doctors can't diagnose - TED Talk (2016)|''What happens when you have a disease doctors can't diagnose'']] By [[Jennifer Brea|Jen Brea]]/TED

Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her illness, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.<ref>{{Cite web|url=https://www.youtube.com/watch?v=Fb3yp4uJhq0 | title = What happens when you have a disease doctors can't diagnose | date = Jan 17, 2017|access-date=|website=YouTube | last = Brea | first=Jennifer | authorlink=Jennifer Brea|archive-url=|archive-date=|publisher=TED}}</ref><ref>{{Cite web|url=https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose | title = What happens when you have a disease doctors can't diagnose | date = Jun 2016|access-date=|website=TED | last = Brea | first=Jennifer | authorlink=Jennifer Brea|archive-url=|archive-date=}}</ref>

<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Veronica Weber/Palo Alto Online (2015)">https://www.youtube.com/watch?v=9_HwOUiImvw</embedvideo>

[[Invisible Illness - Stories of Chronic Fatigue Syndrome|''Invisible Illness - Stories of Chronic Fatigue Syndrome'']] By Veronica Weber/Palo Alto Online

This mini documentary reveals 3 stories of people who have been impacted by [[Chronic Fatigue Syndrome]] - a little known disease that affects roughly 836,000-2.5 million people in the U.S. and receives little research funding. They share emotions of treating loved ones with the disease, their frustrations of being ignored by members of society and the healthcare industry and express hopes of treatment and research. Video by Veronica Weber/Palo Alto Online<ref>{{Cite web|url=https://www.youtube.com/watch?v=9_HwOUiImvw | title = Invisible Illness - Stories of Chronic Fatigue Syndrome | date = Jul 10, 2015 |access-date=|website=YouTube | last = Weber | first = Veronica | authorlink=|archive-url=|archive-date=|publisher=Palo Alto Online}}</ref>

<embedvideo service="youtube" dimensions="400" alignment="right" container="frame" description="By Dr. David Kaufman/Unrest (2018)">https://www.youtube.com/watch?v=RC9TjgE_PlU</embedvideo>

''Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome'' By Dr. [[David Kaufman]]/[[Unrest|''Unrest'']]

This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is '''part of the Unrest Continuing Education module''', made available through the American Medical Women’s Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch [[Unrest]] online for free and receive Continuing Education credit.<ref>{{Cite web|url=https://www.youtube.com/watch?v=RC9TjgE_PlU | title = Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | date = Oct 16, 2018|access-date=|website=YouTube | last = | first = | authorlink = David Kaufman|archive-url=|archive-date=|publisher=Unrest Film}}</ref>

==Epidemiology ==
In the [[United States]], 836,000 - 2.5 million people suffer from ME/CFS. "The total economic costs of ME/CFS are estimated at $17 to $24 billion annually."<ref name="IOM2015-clinicians" /> Some CFS patients can work with [https://www.dol.gov/general/topic/disability/jobaccommodations job accommodations] but 1/3 to 1/2 become unemployed and [[Disability|many rely on SSDI/SSI]].<ref>[http://phoenixrising.me/living-i-the-basics/disability-chronic-fatigue-syndrome-mecfs Disability for CFS - Phoenix Rising]</ref><ref>[http://www.womenshealth.gov/publications/our-publications/fact-sheet/chronic-fatigue-syndrome.html CFS - Womenshealth.gov]</ref><ref>[https://www.masscfids.org/job-accommodations Job Accommodations - MASS CFIDS]</ref>
*[[Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome|Epidemiology]]
:All races and cultures are afflicted with ME/CFS.<ref>[http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91 Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care - Bio-Med Central - July 2011]</ref><ref name="epidemiology">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/epidemiology.html | title = Epidemiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-11-08 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-29}}</ref> Children and adolescents are also diagnosed.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/index.html | title = ME/CFS in Children {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-29}}</ref><ref>{{Cite web|url=https://www.massmecfs.org/pediatric-me-cfs-home-page | title = Pediatric ME/CFS Home Page|website=massmecfs.org|access-date=2019-01-29}}</ref>
*[[Female predominant diseases]]
:Like many [[Autoimmune disease|autoimmune]] and [[Neuro-immune disease|neuro-immune]] diseases where mostly women are afflicted,<ref>[http://www.rightdiagnosis.com/artic/fact_sheet_autoimmune_disease_in_women_nwhic.htm Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015]</ref> the ME/CFS female/male patient ratio per Capelli et al. is 6:1<ref>{{Cite journal | last = Capelli | first = E. | last2 = Zola | first2 = R. | last3 = Lorusso | first3 = L. | last4 = Venturini | first4 = L. | last5 = Sardi | first5 = F. | last6 = Ricevuti | first6 = G. | date = Oct 2010 | title = Chronic fatigue syndrome/myalgic encephalomyelitis: an update|url=https://www.ncbi.nlm.nih.gov/pubmed/21244747|journal=International Journal of Immunopathology and Pharmacology|volume=23|issue=4 | pages = 981–989|doi=10.1177/039463201002300402|issn=0394-6320|pmid=21244747}}</ref> while the CDC states 4:1.<ref name="epidemiology" />
*[[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|Pediatric]]
:Pediatric ME/CFS is defined by the CDC<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-healthcare-professional.html | title = Pediatric ME/CFS: Fact Sheet for Healthcare Professionals {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2017-10-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-13}}</ref> and the [[National Academy of Medicine]] (NAM)<ref name="pediatric">{{Cite journal | last = | first = | date = 2015-03-16 | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome {{!}} Pediatric ME/CFS |url=https://www.nap.edu/read/19012/chapter/8|journal=The National Academies Press|language=en|volume= | page = 181|pages = |doi=10.17226/19012|issue=|via=|quote=}}</ref> although it is usually diagnosed in adults. <ref name="what-is" /> "Children below the age of 8 or 9 do not have the symptom pattern of adolescents past puberty. If the onset of the disease occurs during adolescence, the most common time of onset, the pattern is similar to that of adults."<ref>{{Cite news | url=https://www.omf.ngo/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ | title = ME/CFS in Children | first = David S. | last = Bell | authorlink = David Bell | date = 2016-06-25 | website = [[Open Medicine Foundation]]|access-date=2018-08-11|language=en-US}}</ref> The prognosis in adolescents is considered to be better than in adults.<ref name=":22">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/prognosis.html | title = Prognosis {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-10-28}}</ref><ref name="pediatricprimer" /> Children are diagnosed with ME/CFS at three months of illness under SEID and CCC and ME is diagnosed immediately under ICC.<ref>{{Cite web|url=https://www.masscfids.org/pediatric-me-cfs-links | title = Pediatric ME/CFS links|website=[[Massachusetts ME/CFS & FM Association]]|language=en-GB|access-date=2018-08-11}}</ref><ref name="IOM2015-clinicians" /><ref name="Carruthers, 2003" /><ref name="ICC2011criteria" />
*[[Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome|Prevalence]]
:"Worldwide, there may be as many as 17 – 24 million people with ME/CFS."<ref>{{Cite web|url=https://ammes.org/how-many-people-have-mecfs/ | title = How Many People Have ME/CFS?|website=[[American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society]]|language=en-US|access-date=2019-01-31}}</ref> 25% of ME/CFS patients are [[Severe and very severe ME|housebound or bedbound]] at some point in their illness.<ref name="KeyFacts">{{Cite web|url=https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf | title = Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts | last = | first = | authorlink = | date = 2015 | website = National Academies|archive-url=|archive-date=|access-date=}}</ref><ref>{{Cite book |url=https://www.nap.edu/read/19012/chapter/4 | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | last = | first = |publisher=National Academies of Medicine|chapter =Chapter 4| year = 2015 |isbn=|editor-link=|location=|pages=32|language=en|quote=}}</ref> 90% of patients are undiagnosed.<ref name="what-is" />
*[[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|Prognosis]]
:The prognosis for a patient diagnosed with ME/CFS is considered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning.<ref name="Cairns2005">{{Cite journal | last = Cairns | first = R. | last2 = Hotopf | first2 = M. | date = Jan 2005 | title = A systematic review describing the prognosis of chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/15699087|journal=Occupational Medicine (Oxford, England)|volume=55|issue=1|pages=20–31|doi=10.1093/occmed/kqi013|issn=0962-7480|pmid=15699087}}</ref> The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients.<ref name="Cairns2005" /><ref>{{Cite journal | last= Joyce | first = J. | last2 = Hotopf | first2 = M. | last3 = Wessely | first3 = S. | date = Mar 1997 | title = The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review | url = https://www.ncbi.nlm.nih.gov/pubmed/9093600|journal=QJM: monthly journal of the Association of Physicians|volume=90|issue=3|pages=223–233|issn=1460-2725|pmid=9093600}}</ref>

==Evidence of a disease==

=== Symptoms ===
[[List of symptoms in ME CFS|Symptom presentation varies enormously]] between individuals. Symptom presentation also varies within individuals, as individuals often report that symptoms change over time (increasing or decreasing) and new symptoms may appear while others disappear.<ref>{{Cite web | title = Symptoms and Diagnosis of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) {{!}} CDC|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/index.html|website=[[Centers for Disease Control and Prevention]] | date = 2019-01-18|access-date=2019-02-01|language=en-us}}</ref> There are many symptoms which people with ME/CFS experience, though those listed below are the core symptoms found in all patients.

[[File:Cfs woman sketch.jpg|435x435px|thumb|[[Post-exertional malaise]] (PEM) is a [[List of symptoms in ME CFS|''worsening'' of ME/CFS symptoms]] after minimal [[Exertion#Exertion in ME.2FCFS|'''physical''' or '''mental''' exertion]]. Worsening symptoms may include [[chronic fatigue]]; [[flu-like symptoms]]; [[brain fog|brain fog,]] [[cognitive dysfunction]], and [[word-finding problems]]; [[unrefreshing sleep]]; [[headache]]s and [[migraine]]s; [[chronic pain]]; [[Myalgia|muscle pain]] and [[muscle fatigability]]; [[orthostatic intolerance]], [[neurally mediated hypotension|neurally mediated hypotension,]] or [[Postural orthostatic tachycardia syndrome|POTS]]; and more. The onset of PEM can be [[Delayed onset of post-exertional symptoms|delayed 24-72 hours]] and depending on ME/CFS severity can last days, weeks, or even months]].<ref name="CDC-symptoms" />

[[File:Rosa SEID.JPG|400px|thumb|left|Rosa age 25 in 1986 and mildly ill with [[Systemic Exertion Intolerance Disease#Diagnostic criteria|ME/CFS's core symptoms]]. In 2015 the [[SEID]] criteria were released. Rosa read about [[Post-exertional malaise|PEM]] and how it is delayed and makes [[List of symptoms in ME CFS|ME/CFS symptoms]] like [[Chronic fatigue|CF]], [[Orthostatic intolerance|OI]], and [[Cognitive dysfunction|cognition]] worse. Her life since [[Pediatric myalgic encephalomyelitis/chronic fatigue syndrome|age 17]] fell into place as she never connected her worsening symptoms with increased [[Exertion#Exertion in ME.2FCFS|physical or mental activity]] 24-72 hours prior. She believes not understanding PEM made her illness worsen over the years and is now disabled meeting the [[Canadian Consensus Criteria|CCC]] with PEM"[[Canadian Consensus Criteria#Definition|option]]"]]

[[File:Brian vastag.png|thumb|left|[[Brian Vastag]] is an American and award-winning journalist and an ME/CFS patient that won a disability case against Prudential, proving that PEM is a severe symptom that keeps him from gainful employment]]

[[File:PEM1.JPG|300px|thumb|right|I think [https://twitter.com/hashtag/twofacesofme?f=tweets&vertical=default&src=hash #TwoFacesofME] is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #[[ME/CFS|MEcfs]] research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.<ref>{{Cite web|url=https://twitter.com/JackCroxall/status/1085900441328803840 | title = I think #TwoFacesofME is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #MEcfs research funding is so low - the problem isn’t visible enough. I’m seriously ill in both these photos.pic.twitter.com/hNjK5140kv | last = Croxall | first = Jack | date = 2019-01-17 | website = @JackCroxall|language=en|access-date=2019-01-17}}</ref>]]

[[File:PEM4.JPG|300px|thumb|right|First photo, me in my [[Severe and very severe ME|wheelchair on a rare trip out]]. Second photo, the inevitable crash. Eye half closed, [[Speech difficulties|slurred speech]], [[Dizziness|dizzy]], weak, etc. #TwoFacesofME<ref>{{Cite web|url=https://twitter.com/hopeforMEyet/status/1085909800766980096 | title = First photo, me in my wheelchair on a rare trip out. Second photo, the inevitable crash. Eye half closed, slurred speech, dizzy, weak, etc. #TwoFacesofMEpic.twitter.com/P2OPnnpQvF | last = Karen | date = 2019-01-17 | website = @hopeforMEyet|language=en|access-date=2019-01-17}}</ref>]]

[[File:PEM5.JPG|300px|thumb|right|#TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not [[Severe and very severe ME|severely ill]], and my life is ok, even [so] I wish that one day science will help me & all the #MeCfs sufferers around the globe.<ref>{{Cite web | title = #TwoFacesofME First photo from the morning, the other one from the afternoon ( when I failed to nap 30-60 minutes). I am Not severely ill, and my life is ok, even do I wish that one day science will help me & all the #MeCfs sufferers around the globe.pic.twitter.com/wmhfHcfP0p | url = https://twitter.com/Authorportrait/status/1085815918846832640 | website = @Authorportrait | date = 2019-01-17|access-date=2019-01-17|language=en | first = Henry | last = Köhler}}</ref>]]

*[[Post-exertional malaise]] (PEM) is the hallmark symptom of ME/CFS. After '''physical or mental''' [[exertion]] (which for some patients can be a shower or making out a to-do list, others grocery shopping, socializing or reading a news article, while some just walking to the mailbox, getting to the doctor or mentally following a T.V. program)<ref name="whatis" /><ref name=":0">{{Cite news | url=https://phoenixrising.me/archives/11883 | title = Unraveling Post-exertional Malaise By Jennifer M. Spotila, J.D. | last=Spotlia | first=Jenny | date = 2010-08-06|work=Phoenix Rising|access-date=2018-10-16|archive-url=|archive-date=|publisher=Phoenix Rising|language=en-US}}</ref><ref name=":1">[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref> there is a payback of ''worsening'' [[List of symptoms in ME CFS|ME/CFS symptoms]] which can be delayed 24-72 hours or more<ref>{{Cite web|url=http://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html | title = International CFS/ME Awareness Day - 12th May 2019 | last = Hartley | first = Simon|website=whathealth.com|language=en|access-date=2018-10-16}}</ref><ref>{{Cite journal | last = Lindheimer | first=Jacob B. | last2 = Meyer | first2 = Jacob D. | last3 = Stegner | first3 = Aaron J. | last4 = Dougherty | first4 = Ryan J. | last5 = Van Riper | first5 = Stephanie M. | last6 = Shields | first6 = Morgan | last7 = Reisner | first7 = Amanda | last8 = Shukla | first8 = Sanjay K. | last9 = Light | first9 = Alan R. | date = 2017-04-03 | title = Symptom variability following acute exercise in myalgic encephalomyelitis/chronic fatigue syndrome: a perspective on measuring post-exertion malaise|url=https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1321166|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=5|issue=2 | pages = 69–88|doi=10.1080/21641846.2017.1321166|issn=2164-1846}}</ref><ref name=":15">{{Cite journal | last = Yoshiuchi | first = Kazuhiro | last2 = Cook | first2 = Dane B. | last3 = Ohashi | first3 = Kyoko | last4 = Kumano | first4 = Hiroaki | last5 = Kuboki | first5 = Tomifusa | last6 = Yamamoto | first6 = Yoshiharu | last7 = Natelson | first7 = Benjamin H. | date = 2007-12-05 | title = A real-time assessment of the effect of exercise in chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/17655887|journal=Physiology & Behavior|volume=92|issue=5 | pages = 963–968|doi=10.1016/j.physbeh.2007.07.001|issn=0031-9384|pmc=2170105|pmid=17655887}}</ref> and can last 24 hours and even days, weeks, or months.<ref name="VanNess2010">{{Cite journal | last = VanNess | first = J. Mark | last2 = Stevens | first2 = Staci R. | last3 = Bateman | first3 = Lucinda | last4 = Stiles | first4 = Travis L. | last5 = Snell | first5 = Christopher R. | date = Feb 2010 | title = Postexertional malaise in women with chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/20095909|journal=Journal of Women's Health (2002)|volume=19|issue=2|pages=239–244|doi=10.1089/jwh.2009.1507|issn=1931-843X|pmid=20095909}}</ref><ref>[https://www.fda.gov/downloads/forindustry/userfees/prescriptiondruguserfee/ucm368806.pdf The Voice of the Patient.] A series of reports from the U.S. Food and Drug Administration's (FDA) Patient-Focused Drug Development Initiative. September 2013</ref> The patient will experience even greater fatigue as well as exasperate the [[flu-like symptoms]] and body [[pain]]. Every patient experiences different symptoms and symptom severity from different activities and exertion output according to how sick he or she is with the disease.<ref name="whatis" /><ref name=":0" /><ref name=":1" /> Regarding PEM the [[CFIDS Association of America]] states:
<blockquote>This is a term which describes a symptom in which exercise or exertion can bring on [[malaise]] (illness). In the case of people with ME/CFS, malaise often occurs during a period some 24-72 hours after exertion. For example, in some cases, a short walk can worsen ME/CFS symptoms two days later. This lack of understanding about the delayed onset of symptoms has, in the past, made it harder to test for ME/CFS. Follow up tests, taken less than 24 hours after an initial exercise test, may show that the patient can still perform activities at the same level (before post exertional malaise has a chance to take hold).<ref>[http://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America]</ref></blockquote>
*[[chronic fatigue]]
*[[cognitive dysfunction]]
*[[orthostatic intolerance]] (OI) such as [[postural orthostatic tachycardia syndrome]] (POTS) or [[neurally mediated hypotension]] (NMH)
*[[Unrefreshing sleep|unrefreshing]] sleep See also: [[sleep disturbance]] <ref name="DiagnosticAlgorithm" /><ref name="IOM2015-clinicians" />
==== Other possible symptoms ====
*[[chronic pain]]
*[[immune system]]
*<span class="plainlinks">[[:Category:Neurological signs and symptoms|neurological signs and symptoms]]</span> See also: [[neuroinflammation]].
*[[List of symptoms in ME CFS|List of symptoms in ME/CFS]]

=== Comorbids ===
*[[fibromyalgia]] (FMS)
*[[irritable bowel syndrome]] (IBS)
*[[multiple chemical sensitivity]] (MCS)
*[[temporomandibular joint disorder]] (TMJ) <ref>[http://solvecfs.org/what-is-mecfs/ What is ME/CFS? - Solve ME/CFS Initiative]</ref>

=== Government guides on symptoms ===
'''US Government guides on symptoms'''
*[https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf Clinicians Guide] via The [[Institute of Medicine report]]
*[https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html CDC - ME/CFS Primary Symptoms]

'''Canada guides on symptoms'''
*[http://linkis.com/org/tUheh Alberta Clinicians Guide]

===Biological abnormalities===
Because there is currently no biomedical test for ME/CFS, many have incorrectly assumed that there are no [[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|medical abnormalities]] found in people with the disease. As a result, ME/CFS symptoms are often considered to be [[Medically unexplained physical symptoms|medically unexplained]], and therefore [[Psychologization|psychological]] in origin. While it is true that the disease is poorly understood, many biological abnormalities have been found in a range of different body systems, particularly in the [[central nervous system]], [[autonomic nervous system]], [[immune system]], and [[Metabolic|energy metabolism]].<ref name="IOM2015MECFS">{{Cite book | last1 = Institute of Medicine (US)| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
| publisher = The National Academies Press | location = Washington, DC, US| date = February 10, 2015 | isbn = 978-0-309-31689-7| url = https://pubmed.ncbi.nlm.nih.gov/25695122/ }}</ref> Unfortunately, none have yet proved to be specific enough to ME/CFS as to be useful as a [[Diagnostic biomarker|biomarker]] of the illness, and many were identified in small studies, which need replication. Whilst there have been abnormalities identified to be associated with the illness, it cannot yet be determined whether these are a cause or consequence of the illness.
* [[Gastrointestinal system]]
* [[Natural killer cell]] findings

==== Notable studies ====
* [[Cytokine#Notable_studies|Cytokine ("Notable studies")]]
*Immune findings by [[Mady Hornig]] & [[Ian Lipkin]]<ref name="Hornig20150201immune">{{Cite journal | last1 = Hornig | first1 = Mady | authorlink1 = Mady Hornig | last2 = Montoya | first2 = José G | authorlink2 = Jose Montoya | last3 = Klimas | first3 = Nancy G | authorlink3 = Nancy Klimas | last4 = Levine | first4 = Susan | authorlink4 = Susan Levine | last5 = Felsenstein | first5 = Donna | authorlink5 = Donna Felsenstein | last6 = Bateman | first6 = Lucinda | authorlink6 = Lucinda Bateman | last7 = Peterson | first7 = Daniel L | authorlink7 = Daniel Peterson | last8 = Gottschalk | first8 = C Gunnar | authorlink8 = Gunnar Gottschalk | last9 = Schultz | first9 = Andrew F | authorlink9 = Andrew Schultz | last10 = Che | first10 = Xiaoyu | authorlink10 = Xiaoyu Che | last11 = Eddy | first11 = Meredith L | authorlink11 = Meredith Eddy | last12 = Komaroff | first12 = Anthony L | authorlink12 = Anthony Komaroff | last13 = Lipkin | first13 = W Ian | authorlink13 = Ian Lipkin | title = Distinct plasma immune signatures in ME/CFS are present early in the course of illness | journal = Science Advances | volume = 1 | issue = 1 | date = February 1, 2015 | url = http://advances.sciencemag.org/content/1/1/e1400121 }}</ref>
*[[List of enterovirus infection studies]]

*2014, [[Neuroinflammation]] Japanese Neuroinflammation study,<ref name="NakatomiY2014">{{Cite journal | last1 = Nakatomi | first1 = Yasuhito | authorlink1 = Yasuhito Nakatomi | last2 = Mizuno | first2 = Kei | authorlink2 = Kei Mizuno | last3 = Ishii | first3 = Ishii | authorlink3 = Akira Ishii | last4 = Yasuhiro | first4 = Wada | authorlink4 = Yasuhiro Wada | last5 = Masaaki | first5 = Tanaka | authorlink5 = Masaaki Tanaka | last6 = Shusaku | first6 = Tazawa | authorlink6 = Shusaku Tazawa | last7 = Kayo | first7 = Onoe | authorlink7 = Kayo Onoe | last8 = Sanae | first8 = Fukuda | authorlink8 = Sanae Fukuda | last9 = Joji | first9 = Kawabe | authorlink9 = Joji Kawabe | last10 = Kazuhiro | first10 = Takahashi | authorlink10 = Kazuhiro Takahashi | last11 = Yosky | first11 = Kataoka | authorlink11 = Yosky Kataoka | last12 = Susumu | first12 = Shiomi | authorlink12 = Susumu Shiomi | last13 = Kouzi | first13 = Yamaguti | authorlink13 = Kouzi Yamaguti | last14 = Masaaki | first14 = Inaba | authorlink14 = Masaaki Inaba | last15 = Hirohiko | first15 = Kuratsune | authorlink15 = Hirohiko Kuratsune | last16 = Yasuyoshi | first16 = Watanabe | authorlink16 = Yasuyoshi Watanabe | title = Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An ¹¹C-(R)-PK11195 PET Study | journal = Journal of Nuclear Medicine | volume = 55|issue =6 | page = 945-50 | date = Mar 24, 2014 | pmid = 24665088 | doi = 10.2967/jnumed.113.131045| url = http://jnm.snmjournals.org/content/55/6/945.long}}</ref> Younger's Leptin study<ref name="stanfordleptin" />
* 2014, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome<ref name="Zeineh2014">{{Cite journal | last = Zeineh | first = Michael M. | author-link = Michael Zeineh | last2 = Kang | first2 = James | authorlink2 = | last3 = Atlas | first3 = Scott W. | authorlink3 = | last4 = Raman | first4 = Mira M. | authorlink4 = | last5 = Reiss | first5 = Allan L. | authorlink5 = | last6 = Norris | first6 = Jane L. | authorlink6 = | last7 = Valencia | first7 = Ian | authorlink7 = Ian Valencia | last8 = Montoya | first8 = Jose G. | authorlink8 = Jose Montoya | date = Feb 2015 | title = Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome|url=http://pubs.rsna.org/doi/10.1148/radiol.14141079|journal=Radiology|language=en|volume=274|issue=2 | pages = 517–526|doi=10.1148/radiol.14141079|issn=0033-8419|pmc=|pmid=|access-date=|quote=|via=}}</ref>
<blockquote>Bilateral [[white matter]] atrophy is present in CFS. No differences in perfusion were noted. Right hemispheric increased FA may reflect degeneration of crossing fibers or strengthening of short-range fibers. Right anterior arcuate FA may serve as a [[Diagnostic biomarker|biomarker]] for CFS.</blockquote>
:*2014, [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)|''Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder'' By David Tuller - New York Times: Well]]
[[File:ME-CFS Brain Images.jpg|500px|thumb|center|Top scans: Healthy control patient; Bottom scans: chronic fatigue syndrome (CFS) patient. Image By: [[Michael Zeineh]]]]

*2015, Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology<ref name="stanfordleptin">{{Cite journal | last1 = Stringer | first1 = EA | last2 = Baker | first2 = KS | last3 = Carrol | first3 = IR | last4 = Montoya | first4 = JG | authorlink4 = Jose Montoya | last5 = Chu | first5 = L | authorlink5 = Lily Chu | last6 = Maeker | first6 = HT | last7 = Younger | first7 = JW | authorlink7 = Jarred Younger| title = Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology | journal = J Transl Med.| date = Apr 9, 2013 | pmid = 23570606 | pmc = 3637529 | doi = 10.1186/1479-5876-11-93| url = http://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-11-93 }}</ref> - [https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-11-93 (Full text)]
*2016, ''[[Metabolic features of chronic fatigue syndrome]]''

*2019, ''[[Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy (2019) Mueller, et al|Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy]]''
**2018, [https://www.youtube.com/watch?v=rxdzaWD5wfU ''ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study'']<ref>{{Cite web|url=https://www.youtube.com/watch?v=rxdzaWD5wfU | title = ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study | date = 2018-12-14|access-date=|website=YouTube | last = Younger | first=Jarred | authorlink=Jarred Younger|archive-url=|archive-date=|publisher=SolveCFS}}</ref> (TALK)

===Causes & triggers===
*Outbreaks - see [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|List of outbreaks]]
*Possible infectious triggers: [[Enterovirus]]es, [[Herpesvirus]]es including [[Epstein-Barr virus]]<ref name="Hickie2006">{{Cite journal | last1 = Hickie | first1 = Ian | authorlink1 = Ian Hickie | last2 = Davenport | first2 = Tracey | authorlink2 = Tracey Davenport | last3 = Wakefield | first3 = Denis | authorlink3 = Denis Wakefield | last4 = Vollmer-Conna | first4 = Ute | authorlink4 = Ute Vollmer-Conna | last5 = Cameron | first5 = Barbara | authorlink5 = Barbara Cameron | last6 = Vernon | first6 = Suzanne D | authorlink6 = Suzanne Vernon | last7 = Reeves | first7 = William C | authorlink7 = William Reeves | last8 = Lloyd | first8 = Andrew | authorlink8 = Andrew Lloyd | last9 = Dubbo Infection Outcomes Study Group| title = Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study| journal = BMJ | volume = 333| issue=575 | date = Sep 14, 2006 | pmid = 16950834 | doi = 10.1136/bmj.38933.585764.AE| url = http://www.bmj.com/content/333/7568/575.long }}</ref> [[Q fever]]<ref name="Hickie2006" />, [[Ross River virus]],<ref name="Hickie2006" /> potentially [[Ebola]],<ref name="Hickie2006" />
*Non-viral triggers - physical or psychological [[trauma]], chemical exposure

===Epidemiology===
Prevalence estimates for ME/CFS range between 0.2-2.5%, depending on the definition of the illness used.<ref name="ICC2011criteria" /> In the US, estimates range between 836,000 and 2.5 million people with the illness, though true numbers are under-reported. It is estimated that 84-91% of people with the illness remain undiagnosed.<ref name="IOM2015MECFS" />

*Level of disability (eg, Norwegian study HRQoL by Hvidberg, 2015) suggests quality of life is LOWER than for many cancers, heart diseases, brain stroke, diabetes I & II, rheumatoid arthritis, chronic renal failure, sclerosis, schizophrenia, COPD, etc)<ref name="Hvidberg2015">{{Cite journal | last1 = Hvidberg | first1 = Michael Falk | authorlink1 = Michael Falk Hvidberg | last2 = Brinth | first2 = Louise Schouborg | authorlink2 = Louise Schouborg Brinth | last3 = Olesen | first3 = Anne V | authorlink3 = Anne V Oleson | last4 = Petersen | first4 = Karin D | authorlink4 = Karin Peterson | last5 = Ehlers | first5 = Lars | authorlink5 = Lars Ehlers | title = The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)| journal = PLoS One | date = Jul 6, 2015 | doi = 10.1371/journal.pone.0132421| url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421}}</ref>

===Severely ill patients===
Considerable variation exists in the severity of the illness. The [[International Consensus Criteria]] lists the following severity levels (it should be noted that even "mild" ME/CFS consists of significant debility):

*Mild = 50% reduction in pre-illness activity levels
*Moderate = mostly housebound
*Severe = mostly bedridden
*Very Severe = totally bedridden, and needing help with basic functions.

At least [[Severe and very severe ME|25% of people with ME/CFS are bed-bound or housebound]], often for years or even decades, so are largely an invisible population.<ref name="IOM2015MECFS" /> So invisible in fact, that they have rarely been included as part of research because their level of debility precludes them from traveling to laboratories for required testing. The [[Open Medicine Foundation]]'s [[ME/CFS Severely Ill, Big Data Study]] will be the first in-depth study of people with a severe form of ME/CFS.

Notable patients with severe ME/CFS include [[Whitney Dafoe]], [[Karina Hansen]] (had been sanctioned), [[Laura Hillenbrand]], [[Tom Kindlon]], [[Doctor Speedy]], [[Naomi Whittingham]], [[Jennifer Brea|Jen Brea]], and [[Emma Shorter]].

Though uncommon, there have been [[Causes of death|instances of deaths which have been attributed to the disease]]. (See: [[Sophia Mirza]] and [[Merryn Crofts]].) Also, see [[Vanessa Li]] and [[Lynn Gilderdale]].

===Centers for Disease Control and Prevention (CDC) ===
*Jul 3, 2017, the [[Centers for Disease Control and Prevention|CDC]]'s Chronic Fatigue Syndrome page has been changed to [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (ME/CFS) and [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) recommendations have been removed.<ref>{{Cite web|url=http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ | title = Trial By Error: The CDC Drops CBT/GET | last = Tuller | first=David | date = 2017-07-10 | website = [[Virology blog]]|language=en-US|archive-url=|archive-date=|access-date=2018-08-23}}</ref><ref>{{Cite web|url=https://www.cdc.gov/me-cfs/index.html | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | date = 2018-07-03 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-08-23}}</ref>

*Jul 12, 2018, the "Information for Healthcare Providers" tab and its sub-tabs were updated.<ref>[https://www.cdc.gov/me-cfs/healthcare-providers/index.html Information for Healthcare Providers - ME/CFS - CDC.gov]</ref><ref>{{Cite web|url=https://www.cdc.gov/media/releases/2018/a0712-new-website-me-cfs.html | title = New ME/CFS Web Content for Healthcare Providers {{!}} CDC Online Newsroom {{!}} CDC | date = 2018-07-12 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-08-23}}</ref>
*Feb 25, 2019, Dr. [[Elizabeth Unger]], Chief of CDC's Chronic Viral Disease Branch (CVDB), that houses the ME/CFS program, in collaboration between ''Medscape'' and the CDC put out brief video and commentary page with links to the CDC's July 12th, 2018 updates for medical professionals: ''[https://www.medscape.com/viewarticle/908622?src=rss Chronic Fatigue Syndrome: It's Real, and We Can Do Better].''<ref>{{Cite web | title = Chronic Fatigue Syndrome: It's Real, and We Can Do Better |url = https://www.medscape.com/viewarticle/908622?src=rss| website = Medscape |access-date=2019-02-25 | date = Feb 25, 2019 | last = Unger | first=Elizabeth | authorlink = Elizabeth Unger|archive-url=|archive-date= | last2 = Medscape}}</ref>

'''MEAction input'''
*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/ CDC Revises its Information on ME] [[The MEAction Network]] report on the CDC July 2017 and July 2018 website updates. Recommendations for the CDC's [[ME/CFS]] page have been created from patient feedback on the updates as well as asking for further patient input.

== Tests ==
* [[Natural killer cell]] (NKC) Blood Test

* Sleep study for [[sleep apnea]], [[Restless legs syndrome|restless leg syndrome]], and other sleep disturbances.
* [[Tilt table test]] for [[Orthostatic intolerance|OI]] or [[Postural orthostatic tachycardia syndrome|POTS]].

==Treatments==
There are currently no [[FDA]] approved treatments for ME/CFS. Treatments consist mostly of symptom management, rather than treatment of the underlying cause of the condition, which is not yet understood.<ref name="IACFSME2014primer">{{Cite web | last1 = International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME) | last2 = Friedberg | first2 = Fred | authorlink2 = Fred Friedberg | last3 = Bateman | first3 = Lucinda | authorlink3 = Lucinda Bateman | last4 = Bested | first4 = Alison C | authorlink4 = Alison Bested | last5 = Davenport | first5 = Todd | authorlink5 = Todd Davenport | last6 = Friedman | first6 = Kenneth J | authorlink6 = Kenneth Friedman | last7 = Gurwitt | first7 = Alan R | authorlink7 = Alan Gurwitt | last8 = Jason | first8 = Leonard A | authorlink8 = Leonard Jason | last9 = Lapp | first9 = Charles W | authorlink9 = Charles Lapp | last10 = Stevens | first10 = Staci R | authorlink10 = Staci Stevens | last11 = Underhill | first11 = Rosemary A | authorlink11 = Rosemary Underhill | last12 = Vallings | first12 = Rosamund | authorlink12 = Rosamund Vallings | title = 2014 Primer for Clinical Practitioners (CFS/ME) | journal = IACFS/ME| date = Jul 2014| url = https://www.massmecfs.org/images/pdf/Primer_2014.pdf }}</ref> There are many [[:Category:Potential_treatments|potential treatments]], though their evidence-base is limited, as most research into treatments has gone into psychological approaches to treatment.

=== Drugs ===
[[File:Ampligen.jpg|200px|thumb|right|Ampligen]]
Two treatments that have garnered much attention are [[Ampligen]], produced by [[AIM ImmunoTech]], and [[Rituximab]]. Many people have reported benefit from Ampligen;<ref name="TownCFS">{{Cite web|url=https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue | title = A Town for People with Chronic-Fatigue Syndrome|website=New Yorker | date = Sep 3, 2019 | first = Mike | last = Mariani|access-date=2022-04-13}}</ref>

Attempts to obtain FDA approval for Ampligen in the [[United States]] have failed so it is unavailable to many.<ref name="experimental">{{Cite web|url=https://ammes.org/experimental-treatments/ | title = Experimental treatments | last = | first = | date = |website=[[American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society]]|language=en-US|archive-url=|archive-date=|access-date=2021-03-18}}</ref> [[Argentina]] approved the use of Ampligen for [[Severe and very severe ME|severe ME/CFS]] in 2016.<ref>{{Cite news | url=http://www.globenewswire.com/news-release/2016/08/23/866212/0/en/Hemispherx-Biopharma-Announces-Major-Breakthrough-Approval-for-Commercial-Sale-of-Rintatolimod-U-S-Tradename-Ampligen-to-Treat-Severe-Cases-of-Myalgic-Encephalomyelitis-Chronic-Fat.html | title = Hemispherx Biopharma Announces Major Breakthrough: Approval for Commercial Sale of Rintatolimod (U.S. Tradename: Ampligen®) to Treat Severe Cases of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the Argentine Republic | last = Hemispherx Biopharma Inc | first = | date = Aug 23, 2016|work=GlobeNewswire News Room|access-date=2018-08-13|archive-url=|archive-date=|language=en-US}}</ref><ref>{{Cite news | url=http://cdn2.hubspot.net/hubfs/150154/docs/Hemispherx-Executive-Informational-Overview-11-27-16.pdf | title = Hemispherx Biopharma, Inc. Executive Informational Overview | last = | first = | date = Nov 27, 2016|work=Crystal Research Associates|access-date=|archive-url=|archive-date=|format=PDF}}</ref> Also in 2016, it was made available on a limited basis in Europe.<ref>{{Cite web|url=https://www.bizjournals.com/philadelphia/news/2016/07/25/hemispherx-ships-ampligen-for-european-chronic.html | title = Hemispherx ships Ampligen for European chronic fatigue syndrome program | last = George | first = John | date = Jul 25, 2016 | website = bizjournals.com|archive-url=|archive-date=|access-date=2018-08-13}}</ref> In July of 2018, AIM ImmunoTech announced the expansion of its [[compassionate use|Treatment Protocol/Expanded Access Programs]] (compassionate use) for ME/CFS in the United States, known as '''AMP-511''', to new patients.<ref>[http://www.4-traders.com/HEMISPHERX-BIOPHARMA-INC-31148494/news/Hemispherx-BioPharma-Opens-FDA-Approved-Reimbursement-Based-Expanded-Access-Treatment-Program-for-26862569/ Hemispherx BioPharma : Opens FDA-Approved Reimbursement Based Expanded Access Treatment Program for ME/CFS to New Enrollees - 4 Traders]</ref> AMP-511 "will allow treatment of up to 100 [[ME/CFS]] patients at any one time at approved clinical infusion therapy sites."<ref>{{Cite web|url=https://finance.yahoo.com/news/hemispherx-biopharma-inc-announces-advancement-133000883.html | title = Hemispherx Biopharma Inc. Announces Advancement in Expanded Access Program for Ampligen in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | last = | first = | authorlink = | date = Jan 2, 2019 | website = finance.yahoo.com|publisher=GlobeNewswire|language=en-US|archive-url=|archive-date=|access-date=2019-02-10}}</ref> The most recent Ampligen trial was published in 2020.<ref name="Strayer2020">{{Cite journal | title = Effect of disease duration in a randomized Phase III trial of rintatolimod, an immune modulator for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2020-10-29|url=https://dx.plos.org/10.1371/journal.pone.0240403|journal=PLOS ONE|volume=15|issue=10| pages = e0240403 | last = Strayer | first=David R. | author-link = David Strayer | last2 = Young | first2 = Diane | author-link2 = | last3 = Mitchell | first3 = William M. | authorlink3 = William Mitchell|language=en|doi=10.1371/journal.pone.0240403|pmc=PMC7595369|pmid=33119613|access-date=|issn=1932-6203|quote=|via=}}</ref>

[[Rituximab]], a lymphoma drug, had shown promising results in initial trials in Norway,<ref name="FlugeMain2015">{{Cite journal | last = Fluge | first = Øystein | authorlink = Øystein Fluge | last2 = Risa | first2 = Kristin | authorlink2 = | last3 = Lunde | first3 = Sigrid | author-link3 = | last4 = Alme | first4 = Kine | author-link4 = | last5 = Rekeland | first5 = Ingrid Gurvin | authorlink5 = | last6 = Sapkota | first6 = Dipak | authorlink6 = | last7 = Kristoffersen | first7 = Einar Kleboe | last8 = Sørland | first8 = Kari | last9 = Bruland | first9 = Ove | date = 2015-07-01 | editor-last = van der Feltz-Cornelis|editor-first = Christina | title = B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment|url=http://dx.plos.org/10.1371/journal.pone.0129898|journal=PLOS ONE|language=en|volume=10|issue=7| pages = e0129898|doi=10.1371/journal.pone.0129898|issn=1932-6203|pmc=4488509|pmid=26132314|access-date=|quote=|via=}}</ref> and there were groups crowdsourcing funding for further trials in other countries. In 2017, Drs. [[Øystein Fluge]] and [[Olav Mella]] announced that their Rituximab trial had failed. They stated that they would focus their efforts on attempting to identify a subgroup of ME/CFS patients with an immune profile that would be responsive to Rituximab.<ref>{{Cite web|url=http://simmaronresearch.com/2017/11/norwegian-rituximab-chronic-fatigue-syndrome-mecfs-trial-fails/ | title = Norwegian Rituximab Chronic Fatigue Syndrome (ME/CFS) Trial Fails | date = 2017-11-26 | website = Simmaron Research|language=en-US|access-date=2019-04-23}}</ref> A phase III trial published in 2019 showed Rituximab did not improve ME/CFS.<ref name="phase3-2019">{{Cite journal | last = Fluge | first = Øystein | last2 = Rekeland | first2 = Ingrid G. | last3 = Lien | first3 = Katarina | last4 = Thürmer | first4 = Hanne | last5 = Borchgrevink | first5 = Petter C. | last6 = Schäfer | first6 = Christoph | last7 = Sørland | first7 = Kari | last8 = Aßmus | first8 = Jörg | last9 = Ktoridou-Valen | first9 = Irini | date = 2019-04-02 | title = B-Lymphocyte Depletion in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Randomized, Double-Blind, Placebo-Controlled Trial|url=https://www.ncbi.nlm.nih.gov/pubmed/30934066|journal=Annals of Internal Medicine|doi=10.7326/M18-1451|issn=1539-3704|pmid=30934066}}</ref>

[[Jarred Younger]] announced he will be undertaking a trial of [[low dose naltrexone]] ([[LDN]]) in ME/CFS.<ref>{{Cite web|url=https://www.youtube.com/watch?v=95OlnK-FEdk | title = 2017 Study -- Low Dose Naltrexone for Chronic Fatigue Syndrome | last = Younger | first=Jarred | date = 2016-12-12 | website = YouTube|publisher=Younger Lab|archive-url=|archive-date=|access-date=}}</ref>

=== Treating other conditions ===
Different forms of [[Orthostatic intolerance|OI]] are treated with beta-blockers (Metopropol), [[Fludrocortisone]] (Florinef), and [[Mestinon|Pyridostigmine]].<ref name="ICP2011primer">{{citation | last1 = Carruthers | first1 = BM | authorlink1 = Bruce Carruthers | last2 = van de Sande | first2 = MI | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = KL | authorlink3 = Kenny de Meirleir | last4 = Klimas | first4 = NG | authorlink4 = Nancy Klimas | last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick | last6 = Mitchell | first6 = T | authorlink6 = Terry Mitchell | last7 = Staines | first7 = D | authorlink7 = Donald Staines | last8 = Powles | first8 = ACP | authorlink8 = A C Peter Powles | last9 = Speight | first9 = N | authorlink9 = Nigel Speight | last10 = Vallings | first10 = R | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = L | authorlink11 = Lucinda Bateman | last12 = Bell | first12 = DS | authorlink12 = David Bell | last13 = Carlo-Stella | first13 = N | authorlink13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | authorlink14 = John Chia | last15 = Darragh | first15 = A | authorlink15 = Austin Darragh | last16 = Gerken | first16 = A | authorlink16 = Anne Gerken | last17 = Jo | first17 = D | authorlink17 = Daehyun Jo | last18 = Lewis | first18 = DP | authorlink18 = Donald Lewis | last19 = Light | first19 = AR | authorlink19 = Alan Light | last20 = Light | first20 = KC | authorlink20 = Kathleen Light | last21 = Marshall-Gradisnik | first21 = S | authorlink21 = Sonya Marshall-Gradisnik | last22 = McLaren-Howard | first22 = J | authorlink22 = John McLaren-Howard | last23 = Mena | first23 = I | authorlink23 = Ismael Mena | last24 = Miwa | first24 = K | authorlink24 = Kunihisa Miwa | last25 = Murovska | first25 = M | authorlink25 = Modra Murovska | last26 = Stevens | first26 = SR | authorlink26 = Staci Stevens | title = Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners | date = 2012| isbn = 978-0-9739335-3-6 | url = http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf}}</ref> When treating other diseases, illnesses, and conditions, and ME/CFS comorbidities or overlapping conditions such as sleep difficulties, cognitive problems, pain, and other symptoms it is important to remember that patients are [[Medicine sensitivities|sensitive to medications]].<ref name=":05">{{Cite web | title = Monitoring the Use of All Medicines and Supplements {{!}} Clinical Care of Patients {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) {{!}} CDC|url=https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/monitoring-medication.html|website=[[Centers for Disease Control and Prevention]] | date = 2018-11-08|access-date=2019-01-27|language=en-us}}</ref> The CDC advice to health care practitioners is to be aware that because all drugs can cause side effects, ME/CFS patient symptoms can worsen. "This is particularly true of any medication that acts on the [[central nervous system]], such as sedating medications: therapeutic benefits can often be achieved at lower-than-standard doses. Patients with ME/CFS might tolerate or need only a fraction of the usual recommended doses for medications. After initial management with lower dosing, one or more gradual increases may be considered as necessary and as tolerated by the patient."<ref name=":05" /> For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen OI.<ref name=":05" /><ref name="Carruthers, 2003" />

===Exercise as treatment===
[[File:J Brea TED.JPG|200px|thumb|right|[[Jen Brea|Jennifer Brea]] is an [[United States|American]] who was studying at Harvard; while on a trip to [[Kenya]] she became very ill with what would eventually be diagnosed as [[ME/CFS]]. Brea began experiencing [[Nervous system|neurological]] problems. Her neurologist diagnosed her with "conversion disorder" ([[hysteria]]). When walking home from his office, she collapsed. [[Severe and very severe ME|Jen then needed to use a wheelchair,]] keeping her legs up due to [[Postural orthostatic tachycardia syndrome|POTS]] as her blood pools into her legs]]
Two common treatment recommendations for ME/CFS are [[GET]] and [[CBT]]. These treatments are based on the disproven hypothesis that the illness might have begun with a viral infection but has been perpetuated by [[deconditioning]] from lack of activity, and [[illness beliefs|fear and avoidance of activity]]. GET and CBT are aimed at addressing these hypothesized causes by challenging the unhelpful thoughts that are claimed to result in avoidance of activity, and by increasing fitness through a gradual increase in exercise. These treatments are controversial and are at odds with much of the research literature, which provides evidence that exercise is harmful to people with ME/CFS. A large patient survey of treatment responses found that 74% of people who had tried GET, reported that their symptoms subsequently worsened,<ref name="MEASSUK20150529survey">{{Cite web | last1 = ME Association (UK) | authorlink1 = ME Association | date = May 29, 2015 | title = Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS| url = http://www.meassociation.org.uk/2015/05/23959/ }}</ref> which is consistent with other patient surveys.<ref name="Phoenix20160222Norway2012">{{citation | title = Norwegian patient survey: Experiences of therapeutic approaches (2012) | journal = Phoenix Rising Forum | date = Feb 22, 2016| url = http://forums.phoenixrising.me/index.php?threads/norwegian-patient-survey-experiences-of-therapeutic-approaches-2012-update.43193/ }}</ref>

The [[PACE trial]], published in 2011, is the largest GET trial ever conducted. It has received much publicity as a result of its recovery rate claims, though it has come under strong criticism from within both the scientific and patient community for significant flaws in its design, and for overstating (and in some cases misrepresenting) outcomes in both the initial trial, and follow-up studies.<ref name="Coyne2016">{{Cite journal | last = Coyne | first = James Charles | last2 = Laws | first2 = Keith R | date = 2016 | title=Results of the PACE follow-up study are uninterpretable|url=http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext|journal=The Lancet Psychiatry|language=English|volume=3|issue=2| pages = e6–e7|doi=10.1016/S2215-0366(15)00551-9|issn=2215-0366|via=}}</ref> The study was the subject of a series of investigative pieces by journalist [[David Tuller]] in late 2015, that were highly critical of the trial.<ref name="viroblogMECFS" /> A petition signed by almost 12,000 ME/CFS patients and allies,<ref name="MEACTIONpacepetition">{{Cite web | last1 = #MEAction | authorlink1 = #MEAction| title = Petition: Misleading Claims Should Be Retracted
| publisher = #MEAction | date = Oct 2015 | url = http://my.meaction.net/petitions/pace-trial-needs-review-now}}</ref> and an open letter signed by 42 ME/CFS experts from around the world,<ref name="openletrLANCET2">{{Cite web | last1 = Davis | first1 = Ronald W | authorlink1 = Ronald Davis | last2 = Edwards | first2 = Jonathan C W | authorlink2 = Jonathan Edwards | last3 = Jason | first3 = Leonard A | authorlink3 = Leonard Jason | last4 = Levin | first4 = Bruce | authorlink4 = Bruce Levin | last5 = Racaniello | first5 = Vincent R | authorlink5 = Vincent Racaniello | last6 = Reingold | first6 = Arthur L | authorlink6 = Arthur Reingold | last7 = Ablashi | first7 = Dharam V | authorlink7 = Dharam Ablashi | last8 = Baraniuk | first8 = James N | authorlink8 = James Baraniuk | last9 = Barcellos | first9 = Lisa F | authorlink9 = Lisa Barcellos | last10 = Bateman | first10 = Lucinda | authorlink10 = Lucinda Bateman | last11 = Bell | first11 = David S | authorlink11 = David Bell | last12 = Bested | first12 = Alison C | authorlink12 = Alison Bested | last13 = Broderick | first13 = Gordon | authorlink13 = Gordon Broderick | last14 = Chia | first14 = John | authorlink14 = John Chia | last15 = Chu | first15 = Lily | authorlink15 = Lily Chu | last16 = Enlander | first16 = Derek | authorlink16 = Derek Enlander | last17 = Fletcher | first17 = Mary Ann | authorlink17 = Mary Ann Fletcher | last18 = Friedman | first18 = Kenneth | authorlink18 = Kenneth Friedman | last19 = Kaufman | first19 = David L | authorlink19 = David Kaufman | last20 = Klimas | first20 = Nancy | authorlink20 = Nancy Klimas | last21 = Lapp | first21 = Charles W | authorlink21 = Charles Lapp | last22 = Levine | first22 = Susan | authorlink22 = Susan Levine | last23 = Light | first23 = Alan R | authorlink23 = Alan Light | last24 = Marshall-Gradisnik | first24 = Sonya | authorlink24 = Sonya Marshall-Gradisnik | last25 = Medveczky | first25 = Peter G | authorlink25 = Peter Medveczky | last26 = Nahle | first26 = Zaher | authorlink26 = Zaher Nahle | last27 = Oleske | first27 = James M | authorlink27 = James Oleske | last28 = Podell | first28 = Richard N | authorlink28 = Richard Podell | last29 = Shepherd | first29 = Charles | authorlink29 = Charles Shepherd | last30 = Snell | first30 = Christopher R | authorlink30 = Christopher Snell | last31 = Speight | first31 = Nigel | authorlink31 = Nigel Speight | last32 = Staines | first32 = Donald | authorlink32 = Donald Staines | last33 = Stark | first33 = Philip B | authorlink33 = Philip Stark | last34 = Stein | first34 = Eleanor | authorlink34 = Eleanor Stein | last35 = Swartzberg | first35 = John | authorlink35 = John Swartzberg | last36 = Tompkins | first36 = Ronald G | authorlink36 = Ronald Tompkins | last37 = Underhill | first37 = Rosemary | authorlink37 = Rosemary Underhill | last38 = Vallings | first38 = Rosamund | authorlink38 = Rosamund Vallings | last39 = VanElzakker | first39 = Michael | authorlink39 = Michael VanElzakker | last40 = Weir | first40 = William | authorlink40 = William Weir | last41 = Zinn | first41 = Marcie L | authorlink41 = Marcie Zinn | last42 = Zinn | first42 = Mark A | authorlink42 = Mark Zinn | title = An open letter to the Lancet - again | date = Feb 10, 2016| website = [[Virology blog]]| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/}}</ref> were sent to The Lancet, both calling for the data to be reanalyzed. Twenty-four ME/CFS organizations from 14 different countries have written to Queen Mary University London requesting that the trial data be released for reanalysis.<ref name="MEACTION20160313openletr">{{Cite web | last1 = #MEAction | authorlink1 = #MEAction | title = 24 organisations in 14 countries tell QMUL: Release the PACE data | date = Mar 13, 2016| url = http://www.meaction.net/2016/03/13/24-organisations-in-14-countries-tell-qmul-release-pace-data/#comment-2518 }}</ref> To date, the authors of the trial and editor of The Lancet have refused such requests. Despite such criticism, the PACE trial continues to influence both government and the medical profession's approach to the treatment of ME/CFS in many countries.

One of the reasons that exercise may be harmful to people with ME/CFS, is the presence of [[post-exertional malaise]] (PEM), which is an exacerbation of symptoms following physical, mental or even emotional [[exertion]]. Studies have revealed immunological, muscular, [[Nervous system|neurological]], [[Autonomic nervous system|autonomic]] and [[Cardiovascular system|cardiovascular]] abnormalities in response to exercise in people with ME/CFS. As these results are not also found in healthy sedentary people, the adverse effects of exercise cannot be said to be due to deconditioning.<ref name="TwiskF2015">{{Cite journal | last1 = Twisk | first1 = Frank NM | authorlink1 = Frank Twisk | last2 = Geraghty | first2 = Keith J | authorlink2 = Keith Geraghty | title = Deviant Cellular and Physiological Responses to Exercise in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | journal = Jacobs Journal of Physiology | volume = 1|issue =2|page =007 | date = Jul 11, 2015 | url = http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf }}</ref>{{citation needed|reason=Workwell Foundation studies need to be cited here.}}{{citation needed|reason=The Lights epigenetic changes post-exercise study needs to be cited here.}}

People with ME/CFS should approach exercise with caution, as there is much potential for harm.

[[Anaerobic]] threshold, use of heart rate monitors for activity and pacing. Analeptic, not aerobic.
[[Energy Envelope Theory|Energy envelope]]/[[pacing]] - people do better if stay within their envelope than to push to increase activity

===Graded exercise therapy & Cognitive behavioral therapy ===
[[File:Emma Shorter.JPG|400px|thumb|right|[[Emma Shorter]], is a citizen of [[Scotland]]. Here, she gives testimony before Parliament's Petitions Committee on [[GET]] and how it put her in a wheelchair]]

[[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]] are usually employed in the [[United Kingdom|UK]], [[Ireland]] and some parts of Europe through ME Clinics. They are highly controversial and not recommended by patients, most patient advocates, and research organizations nor by many doctors or researchers outside of the UK. Based on the disproven [[biopsychosocial model]] of ME/CFS, backed up by the flawed [[PACE trial]] which used the flawed [[Oxford criteria]] to diagnose and recruit patients, GET and CBT found its way into treating people with ME/CFS.

[[Exercise]], especially GET, can harm an ME/CFS patient further.

*[[Jennifer Brea]] walked home from her Neurologist's office and became [[severe and very severe ME|wheelchair-bound]].
*This is an experience of serious injury due to GET shared [https://twitter.com/TomKindlon/status/846425974052966400 by K. Miles, via Tom Kindlon on Twitter].
*[[Emma Shorter]] was able to walk a few minutes a day until GET put her in a wheelchair.
*[[Maik Speedy|Dr Maik Speedy]] was also seriously injured by GET and has been bedbound since.
*British MP [[Brynmor John]] collapsed outside the House of Commons gym in 1998 and died, as a result of following his doctor's advice to exercise back to health.

=== Claims of recovery and cures ===
Charlatans claim they can cure CFS (per the CDC "there is no cure"<ref name="treatments">{{Cite web|url=https://www.cdc.gov/me-cfs/treatment/index.html | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) {{!}} Treatment | last = | first = | date = 2018-07-03 | website = [[Centers for Disease Control and Prevention]]|language=en-us|archive-url=|archive-date=|access-date=2021-11-22}}</ref>) when in reality they may be able to treat [[chronic fatigue]] (CF) which is not the result of the neurological illness CFS. Some people misdiagnosed and "recovered" from CFS most likely had CF which can be caused by many illnesses, diseases, and drug therapies or a bad year or two perhaps with [[mononucleosis]] followed by a bout or two of [[influenza]]. These individuals were experiencing a proper immune response whereas ME/CFS patients experience an ongoing improper immune response and other abnormalities for at least 6 months straight with a reduction in activity with a specific symptom set for at least 50% of the time.<ref name="etiology">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html | title = Etiology and Pathophysiology {{!}} Presentation and Clinical Course {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-07}}</ref><ref>{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html | title = IOM 2015 Diagnostic Criteria {{!}} Diagnosis {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-07}}</ref><ref>{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/approach-to-diagnosis.html | title = Proposed Approach to ME/CFS Diagnosis in Children and Adults {{!}} Diagnosis {{!}} Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2018-07-12 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-07}}</ref>

Additionally, there have been media reports of some professional or amateur athletes diagnosed with CFS that recovered in a relatively short period of time after [[rest]], [[:Category:Supplements|supplementation]], and [[:Category:Diets|diet changes]] <ref name=":7" /><ref name=":8" /><ref name=":9" /><ref name=":10" /> that may have had [[overtraining syndrome]],<ref name="spence" /> while some people with [[Addison's disease]] (adrenal failure) are erroneously diagnosed with CFS.<ref name="ICP2011primer" /><ref name="Carruthers, 2003" />

== Notable studies ==
*[[Pathways to prevention report]] (P2P)
*[[Institute of Medicine report]]
*[[PACE trial]] is a highly criticized UK trial designed by psychiatrists to promote [[GET]] and [[CBT]] as therapy which is deemed harmful and useless for ME/CFS patients by many clinicians, researchers, patients, and advocates.

== Continuing education (CME and CE) ==
* [https://www.msms.org/Education/On-Demand-Webinars/Webinar/1059 Update on Chronic Fatigue Syndrome Part 1: Clinical Diagnostic Criteria for Chronic Fatigue Syndrome/CFS now called Myalgic Encephalomyelitis or ME/CFS]<ref>{{Cite web|url=https://www.msms.org/Education/On-Demand-Webinars/Webinar/1059 | title = Update on Chronic Fatigue Syndrome Part 1: Clinical Diagnostic Criteria for Chronic Fatigue Syndrome/CFS now called Myalgic Encephalomyelitis or ME/CFS | last = Bateman | first = Lucinda | authorlink=Lucinda Bateman|publisher=Michigan State Medical Society|via=On-Demand Webinars|archive-url=|archive-date=|access-date=2019-02-25}}</ref> (CME)
* [https://www.msms.org/Education/On-Demand-Webinars/Webinar/1060 Update on Chronic Fatigue Syndrome Part 2: Uniting Compassion, Attention and Innovation to treat ME/CFS.]<ref>{{Cite web|url=https://www.msms.org/Education/On-Demand-Webinars/Webinar/1060 | title = Update on Chronic Fatigue Syndrome Part 2: Uniting Compassion, Attention and Innovation to treat ME/CFS. | last=Bateman | first = Lucinda | authorlink=Lucinda Bateman|website=Michigan State Medical Society|via=On Demand Webinars|archive-url=|archive-date=|access-date=2019-02-25}}</ref> (CME)
* [https://www.medscape.org/viewarticle/907632?src=acdmpart_cdc Diagnosing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experts Weigh In]<ref>{{Cite web|url=https://www.medscape.org/viewarticle/907632?src=acdmpart_cdc | title = Diagnosing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experts Weigh In | last = Bateman | first = Lucinda | authorlink=Lucinda Bateman | last2 = Azar | first2 = Natalie | authorlink2 = Natalie Azar | date = |publisher=Medscape|archive-url=|archive-date=|access-date=2019-02-25 | last3 = Klimas | first3 = Nancy | authorlink3 = Nancy Klimas | last4 = Montoya | first4 = Jose | authorlink4 = Jose Montoya}}</ref> (CME/CE)
* [https://www.unrest.film/cme Watch ''Unrest'' and Receive Continuing Medical Education (CME /CE) Credit]<ref>{{Cite web|url=https://www.unrest.film/cme | title = Unrest Continuing Medical Education Program | date = |website=UNREST|language=en-US | last = Indiana University School of Medicine | last2 = American Medical Women's Association|archive-url=|archive-date=|access-date=2019-02-25}}</ref>

==History==
*[[Osler's Web]] is a book by [[Hillary Johnson]] on the early history of CFS.
*[[Thirty Years of Disdain]] by [[Mary Dimmock]] and Matthew Lazell-Fairman picks up on the ME/CFS history where Osler's Web leaves off.

=== Deaths of ME/CFS patients ===
*[[Causes of death]]
*[[Suicide]]

'''Death certificates with ME or CFS'''
*[[Merryn Crofts]]' death is attributed to ME.
*[[Sophia Mirza]]'s death is attributed to CFS.

In the UK, United States, and Australia there are further reports of loved ones who have died due to ME/CFS.<ref>{{Cite news | url=https://www.newscientist.com/letter/mg19125620-600-not-sadly-the-first/ | title = Not, sadly, the first|work=New Scientist|access-date=2018-08-23|language=en-US}}</ref> See Editor's Note<ref>{{Cite news | url=https://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome/ | title = First official UK death from chronic fatigue syndrome | last = Hooper | first = Rowan | date = 2006-06-16|work=New Scientist|access-date=2018-08-23|archive-url=|archive-date=|language=en-US}}</ref>

==See also==
*[[List of systematic reviews about ME/CFS/SEID]]
*[[International Consensus Criteria]] - with primer for clinicians
*[[misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome]]
*[[Fibromyalgia]]
*[[PACE trial]]
*[[Primer for patients]]
*[[Primer for the public#Disease_names_and_acronyms_around_the_world|Primer for the public (''Disease names and acronyms around the world'' section)]]
==Learn more==
'''Films'''
*''[[Forgotten Plague]]'' is a US documentary about [[Ryan Prior]], an afflicted journalist who investigates the disease and its history and why the CDC has left millions sidelined from life; available for [http://www.forgottenplague.com/ streaming and DVD purchase]. (2015)
[[File:Forgotten Plague.jpeg|200px|thumb|center]]
*[[Unrest|''Unrest'']] is a US documentary film that aired on PBS's ''Independent Lens'' in 2018 and is available for [https://www.unrest.film/watch/#digital streaming] and [https://www.unrest.film/store/ DVD purchase]. [[Jennifer Brea]], a person with [[myalgic encephalomyelitis|ME]], directs. (2017)
[[File:Unrest.jpg|400px|thumb|center]]

'''ME/CFS organization's and researcher's material'''
*[https://www.youtube.com/watch?v=hRdn4A2SGic Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education]<ref>{{Cite web|url=https://www.youtube.com/watch?v=hRdn4A2SGic | title = Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education | last = Iskander | first=John | last2 = Komaroff | first2 = Anthony | date = 2016-02-17 | website = YouTube|publisher=Centers for Disease Control and Prevention (CDC)|archive-url=|archive-date=|access-date=}}</ref>
*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis]<ref>{{Cite news | url=https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view | title = Caregivers Guide to ME|type=pdf | last = | first = | date = 2018 | work=Google Docs|access-date=2018-08-23|archive-url=|archive-date=|publisher=#MEAction}}</ref>
*[https://www.massmecfs.org/images/pdf/Primer_2014.pdff IACFS/ME Primer for Clinical Practitioners - 2014 Edition]<ref name="IACFSME2014primer" />
*[http://www.meassociation.org.uk/2014/07/our-purple-booklet-clear-clinical-guidance-and-the-latest-research-all-wrapped-up-in-52-pages/ ME Association clinical guidance]<ref name="MEASSUKprimer2013">{{Cite web | last1 = Shepherd | first1 = C | authorlink1 = Charles Shepherd | last2 = Chaudhuri | first2 = A | authorlink2 = Abhijit Chaudhuri | title = ME/CFS/PVFS An Exploration of the Key Clinical Issues ('Purple Booklet') | date = 2013| url = http://www.meassociation.org.uk/wp-content/uploads/2011/01/pruple-booklet-front-cover.jpg }}</ref>
*[http://youtu.be/c2vIQ92wU9Y ME/CFS Diagnosis and Name with Dr Nancy Klimas (video)]<ref>{{Cite web|url=https://www.youtube.com/watch?v=c2vIQ92wU9Y&feature=youtu.be | title = ME/CFS Diagnosis and Name with Dr. Nancy Klimas | last = Klimas | first = Nancy | date = 2014-06-21 | website = YouTube|publisher=ME/CFS Community|archive-url=|archive-date=|access-date=}}</ref>
*[http://treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf ME/CFS Treatment Resource Guide for Practitioners by A Martin Lerner, MD]<ref name="LernerPrimer2011">{{Cite web | last1 = Lerner | first1 = AM | authorlink1 = A Martin Lerner| title = ME/CFS Treatment Resource Guide for Practitioners| date = 2011| url = http://treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf }}</ref>
*[http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf Myalgic Encephalomyelitis - Adult & Pediatric - International Consensus Criteria Primer for Medical Practitioners]<ref name="ICP2011primer" />
*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?]<ref name="whatis">{{Cite news | url=https://www.omf.ngo/what-is-mecfs/ | title = What is ME/CFS?|website=[[Open Medicine Foundation]]|access-date=2018-08-23|language=en-US}}</ref>

'''[[Patient mental health]]'''

:Patients who were deemed as suffering from mental health rather than a biological illness:
:*[[Karina Hansen]] is a young [[Denmark|Danish]] woman taken from her family for 3 1/2 years due to [[Per Fink]]'s insistence her ME was due to mental health issues.
:*[[Sophia Mirza]] was taken forcibly from her home to a mental hospital only to be returned shortly after; she then died of ME.
:*[[Ean Proctor]] was taken from his parents as a young boy and he was told his "parents were letting him die." He had become [[paralysis|paralyzed]] and mute and was let go in the deep end of a pool to make him swim, and put on a scary theme park ride to scare him into moving.

'''More mental health information'''
*ME/CFS is not [[depression]]. It causes a lack of energy, not a lack of desire to do activities.<ref name="Griffith, 2008">{{Cite journal | last1 = Griffith | first1 = J.P. | authorlink1 = | last2 = Zarrouf | first2 = F.A. | authorlink2 = | title = A Systematic Review of Chronic Fatigue Syndrome: Don’t Assume It’s Depression| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2292451/| pmc =2292451| journal = Primary Care Companion to The Journal of Clinical Psychiatry | volume = 10 | issue = 2 | page = 120–128| date = 2008 | pmid = 18458765 | doi = 10.4088/pcc.v10n0206 }}</ref><ref name="Hawk, 2006">{{Cite journal | last1 = Hawk | first1 = C | authorlink1 = | last2 = Jason | first2 = L | authorlink2 = Leonard Jason | last3 = Torres-Harding | first3 = S | authorlink3 = Susan Torres-Harding| title = Differential diagnosis of chronic fatigue syndrome and major depressive disorder | journal = International Journal of Behavioral Medicine | volume = 13 | issue = 3 | page = 244-51 | date = 2006 | pmid = 17078775 | doi = 10.1207/s15327558ijbm1303_8
| url = http://www.healthrising.org/wp-content/uploads/2014/04/Hawk.-Jason.-Differential-Diagnosis-of-Chronic-Fatigue-Syndrome-and-Major-Depressive-Disorder.pdf }}</ref><ref name="myhill">{{Cite web|url=http://drmyhill.co.uk/wiki/CFS_or_depression_-_what_are_the_differences | title = CFS or depression - what are the differences - DoctorMyhill|last =Myhill | first =Sarah | authorlink = Sarah Myhill|website=DrMyhill|language=en|access-date=2018-08-23}}</ref>

'''Research'''
* 2015, [[Institute of Medicine report]] (IOM Report)

* 2016, [http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598 The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem]<ref name="Edwards2016">{{Cite journal | last1 = Edwards | first1 = JCW | authorlink1 = Jonathan Edwards | last2 = McGrath | first2 = S | authorlink2 = Simon McGrath | last3 = Baldwin | first3 = A | authorlink3 = Adrian Baldwin | last4 = Livingstone | first4 = M | authorlink4 = Mark Livingstone | last5 = Kewley | first5 = A | authorlink5 = Andrew Kewley | title = The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem | journal = Fatigue: Biomedicine, Health & Behavior | volume = 4 | issue = 2 | pages = 63–69 | date = 2016-04-02 | doi = 10.1080/21641846.2016.1160598 | url = http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598}}</ref>
*2018, The CDC based it's updated [https://www.cdc.gov/me-cfs/index.html ME/CFS page] based on the IOM Report.
*[[Notable studies]]
'''Articles and blogs'''
* Feb 21, 2019 [https://www.rcseng.ac.uk/news-and-events/blog/differential-diagnosis-me/ Are surgeons missing the major differential diagnosis that is more common than multiple sclerosis and HIV combined?]<ref>{{Cite web|url=https://www.rcseng.ac.uk/news-and-events/blog/differential-diagnosis-me/ | title = Are surgeons missing the major differential diagnosis that is more common than multiple sclerosis and HIV combined? | last = Muirhead | first=Nina | authorlink=Nina Muirhead | date = Feb 21, 2019 | website = Royal College of Surgeons|language=en|archive-url=|archive-date=|access-date=2019-02-22}}</ref>

==References==
<references>
<ref name="viroblogMECFS">{{Cite web | title = List of ME/CFS articles published at Virology Blog| url = http://www.virology.ws/mecfs/ }}</ref>
</references>
[[Category:Primers]]

List of famous people with long COVID

2024-04-29T19:36:25Z

Forestglip:Revert vandalism

The 2019-2024 coronavirus pandemic has led to hundreds of thousands developing [[COVID-19]], a significant number of these continue to have symptoms many weeks or months later, known as [[long COVID]], also known as [[Post-Acute Sequelae of COVID-19]] (PASC).<br>These "long haulers" come from many different walks of life, ages, and races, including people without pre-existing conditions who had mild [[COVID-19]].

==Actors, musicians and artists ==
{| class="wikitable sortable"
! Name
! Occupation
! Nationality
! Diagnosis
|-
| [[Lena Dunham]] || Actor || American || Dunham caught COVID-19 in March 2020, improving but still had long COVID symptoms in September 2020.<ref>{{Cite web |url = https://www.instagram.com/p/CDUUmlrjNlI/|last = Denham|first = Lena | date = Mar 2020 | website = Instagram | title = Update}}</ref>
|-
|Dave Navarro
|Guitarist from Jane's Addiction
|American
|Navarro caught COVID-19 in December 2021 and has been dealing with symptoms ever since. He self identified as a Covid Long-Hauler in People Magazine May 2022.<ref>{{Cite web|url=https://people.com/music/dave-navarro-details-his-experience-with-long-haul-covid/ | title = Dave Navarro Details His Experience with Long-Haul COVID: 'Fatigue and Isolation Is Pretty Awful' | date = May 31, 2022|first = Rachel |last = DeSantis | website = PEOPLE|language=en|access-date=2022-06-12}}</ref>
|-
|Gwyneth Paltrow
|Actor, GOOP Founder
|American
|Gwyneth caught COVID-19 "early on" and was reportedly having Long-COVID symptoms in April 2021.<ref>{{Cite web|url=https://people.com/health/gwyneth-paltrow-says-her-covid-symptoms-sometimes-come-back-a-little/ | title = Gwyneth Paltrow Says Her Long-Haul COVID Symptoms Have Been 'Pretty Wild' | date = April 15, 2021|first = Maria | last = Pasquini | website = PEOPLE|language=en|access-date=2022-06-12}}</ref> As of March 2023 she still had chronic symptoms and was seeing a functional medicine practitioner.<ref>{{Cite web|url=https://www.forbes.com/sites/brucelee/2023/03/18/gwyneth-paltrow-refers-to-her-long-covid-when-responding-to-bone-broth-backlash/|title=Gwyneth Paltrow Refers To Her Long Covid When Responding To Bone Broth Backlash|last=Lee|first=Bruce Y.|website=Forbes|language=en|access-date=2024-03-11}}</ref>
|-
| [[Billy Eilish|Billie Eilish]] || Singer/songwriter || American || Eilish was ill with COVID-19 for two months and was continuing to have symptoms in Dec 2021.<ref>{{Cite news |url = https://www.theguardian.com/music/2021/dec/14/billie-eilish-i-would-have-died-from-covid-19-if-i-hadnt-been-vaccinated| title = Billie Eilish: I would have died from Covid-19 if I hadn’t been vaccinated|publisher =The Guardian | first = Laura |last = Snapes | date = Dec 14, 2021}}</ref>
|-
| [[Marianne Faithfull]] || Singer and actor|| British (English) || Faithfull caught COVID-19 in April 2020, and still had long COVID in June 2021<ref>{{Cite news | url=https://www.telegraph.co.uk/music/what-to-listen-to/marianne-faithfull-may-never-sing/ | title = Marianne Faithfull: ‘I may never sing again’ | last = McCormick|first = Neil | date = 2021-04-24|work=The Telegraph|access-date=2021-06-29|language=en-GB|issn=0307-1235}}</ref>
|-
| [[Salma Hayek]] || Actor || Mexican || Hayek almost died from COVID-19 and went back to filming while still suffering from some lingering fatigue<ref>{{Cite news | title = Salma Hayek on ‘Hitman’s Wife’s Bodyguard,’ ‘Eternals’ and Her Secret Near-Fatal Battle With COVID|first = Marc|last = Malkin|publisher =Variety | date = May 19, 2021|url=https://variety.com/2021/film/features/salma-hayek-eternals-house-of-gucci-hitmans-wifes-bodyguard-1234975898/
|quote =Hayek knows about healing. She spent the better part of the past year recovering from a near fatal case of COVID-19, a fact she chose to keep quiet until now. During an interview over Zoom, she reveals that she battled the virus in the early days of the pandemic...<br>Hayek spent about seven weeks isolated in a room of the house. At one point, she was put on oxygen. She still hasn’t fully regained the energy she once had.<br >However, she returned to work in April to shoot Ridley Scott’s “House of Gucci,” in which she plays a clairvoyant who was convicted of helping Patrizia Reggiani (Lady Gaga) orchestrate the 1995 killing of her ex-husband Maurizio Gucci (Adam Driver), an heir to the Gucci fashion empire. “It was not a lot of time,” Hayek says. “It was easy. It was the perfect job to just get back into it. I had started doing Zooms at one point, but I could only do so many because I would get so tired.”}}</ref>
|-
| [[Gez Medinger]] || Filmmaker, science journalist and former runner || British || In March 2020, Gez Medinger's COVID-19 symptoms started. His symptoms include waves of fatigue he describes as "like you've been drugged", headaches, severe cognitive problems, [[post-exertional malaise]] and skin problems.<ref name="RNZ2020">{{Cite news | url=https://www.rnz.co.nz/news/on-the-inside/426467/covid-19-s-long-shadow-the-light-at-the-end-of-the-tunnel-just-isn-t-there | title = Covid-19's long shadow: 'The light at the end of the tunnel just isn't there' | date = Sep 19, 2020 | first = Louise | last = Thornley |publisher=RNZ}}</ref>
|-
| [[Alyssa Milano]] || Actor, singer, producer and author || American || Diagnosed with COVID-19 in April 2020 and needed hospital treatment in August.<ref>{{Cite tweet|url=https://twitter.com/alyssa_milano/status/1292271830359662592 | title = Alyssa Milano status|user=Alyssa Milano|website=Twitter|language=en|access-date=2020-09-23 | date = Sep 2020}}</ref><ref>{{Cite web|url = https://people.com/health/alyssa-milano-wants-people-to-get-vaccinated-as-she-continues-to-deal-with-long-haul-covid/ | website = People | title = Alyssa Milano Says Long-Haul COVID Has 'Impacted Every Part of My Health' | date = May 25, 2021|first = Julie | last = Mazziotta}}</ref> She still had symptoms 2 years later in April 2022 and identified as a long hauler.<ref>{{Cite web|url=https://www.nbcnewyork.com/news/coronavirus/alyssa-milano-details-long-covid-battle-every-symptom-imaginable/3658305/|title=Actress Alyssa Milano Details Long COVID Battle: ‘Every Symptom Imaginable'|last=Gaudino • •|first=Linda|date=2022-04-22|website=NBC New York|language=en-US|access-date=2024-03-11}}</ref>
|-
| [[Emma Samms]] || Actor|| British || Caught COVID-19 in March, was still ill in September<ref>{{Cite web|url=https://people.com/tv/dynasty-emma-samms-talks-long-covid-symptoms/ | title = Dynasty Star Emma Samms Details Her Months-Long COVID-19 Symptoms, Like 'Panic-Inducing' Fatigue|publisher=People|language=en|access-date=2020-09-23}}</ref>
|-
|[https://www.joshuaroman.com/ Joshua Roman]
|Cellist and Composer
|American
|Roman has struggled with Long Covid since 2020 and has had active Covid Infections 3 times. He is working through the experience in his newest work ''- [https://www.joshuaroman.com/projects/immunity Immunity]''
|-
|Dianna Cowern
|YouTuber
|American
|Developed severe Long Covid around July 2022<ref>{{Cite web|url=https://www.cbsnews.com/colorado/news/youtuber-physics-girl-long-covid-sister-helps-from-denver/|title=YouTuber "Physics Girl" dealing with long COVID as her sister helps from Denver - CBS Colorado|last=Arenas|first=Jasmine|date=2023-03-05|website=www.cbsnews.com|language=en-US|access-date=2024-03-11}}</ref> and had not recovered as of December 2023, requiring care from her husband.<ref>{{Citation|title=Dianna Health Update from SmarterEveryDay|url=https://www.youtube.com/watch?v=xbcjf-hrOAs|access-date=2024-03-11|language=en}}</ref>
|}

==Athletes and sports personalities==
{| class="wikitable sortable"
! Name
! Occupation
! Nationality
! Symptoms
|-
| [[Oonagh Cousins]] || Rower ||British || After 7 months with Long COVID, Oonagh was steadily improving but unable to train, with symptoms including [[fatigue]] and [[cognitive dysfunction|brain fog]]. She said "On the worst days you struggle to walk or cook a meal or compose an email... As time goes on, you are more able to see friends or go for a short jog."<br>"On the worst days you wake up, and you're like, 'I can't wait until it's night time again'.<ref>{{Cite news | title = Long Covid: Oonagh Cousins, GB rower, on the effects | url = https://www.bbc.co.uk/sport/rowing/54702500 | publisher =BBC Sport | first =Katie |last =Falkingham | date = Nov 4, 2020}}</ref>
|-
| [[Grigor Dimitrov]] || Tennis player ||Bulgarian || Dimitrov described being almost recovered after four months "I feel way, way better - I don't even take naps any more or anything like that."<ref name="dimitrov-walton">{{Cite news | title = 'Long covid': Grigor Dimitrov on still suffering from coronavirus symptoms |url = https://www.bbc.co.uk/sport/54872855|first =Laura|last = Scott|publisher =BBC Sport | date =November 13, 2020}}</ref>
|-
| [[Tanysha Dissanayake]] || Tennis Player ||British || Former British junior Tanysha Dissanayake has retired from tennis at the age of 21 due to the effects of long Covid, saying she feels “a million years away” from being able to play again. <ref>{{Cite web |website =Eurosport |url = https://www.eurosport.com/tennis/former-british-junior-tanysha-dissanayake-who-played-against-emma-raducanu-retires-aged-21-due-to-lo_sto9191662/story.shtml| title = FORMER BRITISH JUNIOR TANYSHA DISSANAYAKE, WHO PLAYED AGAINST EMMA RADUCANU, RETIRES AGED 21 DUE TO LONG COVID| date =Oct 17, 2022}}</ref>
|-
| [[Chris Froome]] || Road Racing Cyclist ||Kenyan-British || Froome - a seven-time Grand Tour winner - said that Covid impacted on his heart and his VO2 max, which is the amount of oxygen someone can consume during exercise. <ref>{{Cite web |website =Eurosport |url = https://www.eurosport.com/cycling/tour-de-france/2023/chris-froome-reveals-the-long-term-impacts-of-contracting-covid-19-at-the-tour-de-france-a-heavy-imp_sto9262330/story.shtml| title = CHRIS FROOME REVEALS THE LONG-TERM IMPACTS OF CONTRACTING COVID-19 AT THE TOUR DE FRANCE: 'A HEAVY IMPACT ON THE HEART' | date =Dec 7, 2022}}</ref>
|-
|[[Eduardo Rodriguez]] || Baseball pitcher for the Boston Red Sox, now with Detroit Tigers ||Venezuelan|| Developed fatigue and myocarditis after COVID-19, and was unable to play for the rest of 2020<ref>{{Cite journal | last = Morley|first = John E. | date = 2020-10-05 | title = COVID-19 — The Long Road to Recovery|url=https://doi.org/10.1007/s12603-020-1473-6|journal=The journal of nutrition, health & aging|language=en|doi=10.1007/s12603-020-1473-6|issn=1760-4788|pmc = 7533666}}</ref><ref>{{Cite web|url=https://www.usatoday.com/story/sports/mlb/2020/09/26/red-sox-eduardo-rodriguez-cleared-after-covid-related-heart-issue/3546971001/ | title = Red Sox pitcher Eduardo Rodriguez cleared for physical activity after COVID-related heart issue|last = Gleeson | first = Scott|website=USA TODAY|language=en-US|access-date=2020-11-07}}</ref>
|-
| [[Michael Ojo]] || Basketball player ||American || Died aged 27 during training in Serbia as a result of heart-related complications. Ojo had appeared to have recovered from COVID-19 rather than having the recurring or persistent symptoms that [[long COVID|long-haulers describe]].<ref>{{Cite web|url=https://www.cbsnews.com/news/michael-ojo-former-florida-state-center-dies-age-27/ | title = Former Florida State center Michael Ojo dies after collapsing during training at age 27 | website = CBS news|language=en-US|access-date=2020-11-07}}</ref>
|-
| [[Jonny Walton]] || Rower ||British || Walton described his early symptoms as: "My heart rate was massively up. We do do a lot of altitude training but it was like being at altitude and having to breathe through a straw... We got on the rowing machine and it appeared that my physiology had just gone overnight, and just kind of fallen off a cliff". He is now back in training and fully recovered.<ref name="dimitrov-walton" />
|-
| [[Jonathan Toews]] || Hockey Player ||American||He announced on February 19, 2023 that he was still suffering from symptoms of long COVID and Chronic Immune Response Syndrome. He offered no timetable for his return, commenting, "it has reached the point where I had no choice but to step back and concentrate on getting healthy."<ref>{{Cite web|url=https://news.yahoo.com/blackhawks-c-toews-dealing-long-202430802.html | title = Blackhawks C Toews dealing with long COVID-19 symptoms | website = Yahoo! Sports|language=en-US}}</ref> On April 13, Blackhawks general manager Kyle Davidson announced that the team will not re-sign Toews after his contract expires at the end of the season.
|-
|}

==TV presenters, Authors, journalists and writers ==
{| class="wikitable sortable"
|-
! Name || Occupation || Nationality || Symptoms
|-
|[[Chris Cuomo]] || TV presenter/media personality || American || Caught COVID-19 in April, and was still ill three months later<ref>{{Cite web |website =YouTube |url = https://www.youtube.com/watch?v=utFi8leu8hY| title = Chris Cuomo Is Still Fighting Lingering COVID-19 Effects | date =Jul 15, 2020}}</ref>
|-
|[[Antony Loveless]] || Military author and former war correspondent || British || Long covid left him partner disabled, struggling to walk, and "robbed of normal life", along with his partner. Loveless developed neutropenia, [[postural orthostatic tachycardia syndrome]] (POTS), and chronic "covid tongue", and partner Claire Hooper developed type II diabetes, severe difficulty walking, and [[hypertension|high blood pressure]].<ref name="normallife">{{Cite news |url = https://www.mirror.co.uk/news/uk-news/long-covid-robbed-normal-life-25631568 | title = Man 'robbed of normal life' by Long Covid after falling ill with virus alongside partner | first =Susie |last = Boniface | date = Dec 6, 2021|publisher = The Mirror}}</ref><ref name="forgotten-victims">{{Cite news | publisher =The Mirror |url = https://www.mirror.co.uk/news/politics/long-covid-victims-plan-b-25664098| title = These are the forgotten victims of Covid. Think about them when you moan about Plan B | date =Dec 10, 2021}}</ref>
|-
| [[Michelle Mone]] || Baroness and politician || British || Mone reported that long COVID left her breathless and losing weight.<ref>{{Cite news |url = https://www.mirror.co.uk/3am/celebrity-news/michelle-mone-drops-another-15-24317025 | title = Michelle Mone drops another 1.5 stone after Covid battle and shows off results|publisher =The Mirror | first =Carly |last =Hacon | date =Jun 15, 2021}}</ref>
|-
| [[Carol Voderman]] || TV presenter and author || British || Struggled to walk more than 100 yards for three months.<ref>{{Cite news | publisher=The Independent |url = https://www.independent.co.uk/arts-entertainment/tv/news/carol-vorderman-long-covid-gmb-b1865406.html | title = Carol Vorderman says she ‘couldn’t walk 100 yards’ for three months after catching long Covid | first =Isobel |last =Lewis | date =June 14, 2021}}</ref>
|-
|}

==Politicians ==
{| class="wikitable sortable"
! Name
! Occupation
! Nationality
! Diagnosis
|-
| [[Andrew Gwynne]] MP|| Politician || British || Caught COVID-19 in March 2020, still ill and walking very slowly 6 months later<ref>{{Cite web|url=https://www.newstatesman.com/politics/health/2020/09/rise-long-haulers-how-long-does-covid-19-last-patients | title = The rise of the “long haulers”: how long does Covid-19 last in patients?|website=New Statesman|language=en|access-date=2020-09-23}}</ref>
|-
|Sen. Jim Inhofe (R-OK)
|Politician
|American
|Retired in 2022 due to Long Covid.<ref>{{Cite web|url=https://news.yahoo.com/gop-ex-sen-inhofe-retired-184534096.html|title=GOP Ex-Sen. Inhofe Retired Due To Long COVID After Opposing COVID Aid|date=2023-02-24|website=Yahoo News|language=en-US|access-date=2024-02-17}}</ref>
|-
|Sen. Tim Kaine (D-VA)
|Politician
|American
|Since 2020, still serving.<ref>{{Cite web|url=https://www.politico.com/news/2022/08/08/long-covid-congress-kaine-00049921|title=Tim Kaine has long Covid. That’s not moving Congress to act.|last=Ollstein|first=Alice Miranda|date=2022-08-08|website=POLITICO|language=en|access-date=2024-02-17}}</ref>
|}

==Well-known scientists and academics==


==Other famous people ==
{| class="wikitable sortable"
! Name
! Occupation
! Nationality
! Diagnosis
|-
| [[Jazmin Grimaldi]] ||Daughter of Monaco's Prince Albert II || Monegasque || Re-hospitalized with COVID-19 a month after her first hospitalization<ref>{{Cite web|url=https://www.ibtimes.co.uk/jazmin-grimaldi-was-hospitalised-again-worsening-covid-19-symptoms-1682240 | title = Jazmin Grimaldi was hospitalised again for worsening COVID-19 symptoms | date = 2020-08-20 | website = International Business Times UK|language=en|access-date=2020-11-07}}</ref>
|-
|Dianna Cowern (Physics Girl)
|Youtuber
|American
|Caught COVID-19 in July 2022 <ref>{{Cite tweet|url=https://twitter.com/thephysicsgirl/status/1678425612166520832?lang=en|title=Today marks one year since I got COVID|user=thephysicsgirl|last=Cowern|first=Dianna|date=July 10, 2023|quote=Today marks one year since I got COVID. I’m finally starting to see tiny bits of progress in my recovery, which I feel cautiously optimistic about.

But today I mostly feel a profound grief, missing the life I had a year ago. 😔

#LongCovid|archive-url=https://archive.is/mMMI4|archive-date=January 14, 2024|url-status=live|access-date=January 14, 2024}}</ref>and has been bed bound with ME/CFS, MCAS, and POTS since January 2023 <ref>{{Cite tweet|url=https://twitter.com/thephysicsgirl/status/1664614439700795392|title=It’s been nearly 5 months of being completely bedridden.|user=thephysicsgirl|last=Cowern|first=Dianna|date=January 14, 2024|quote=It’s been nearly 5 months of being completely bedridden. I’ve made very little progress. I can still barely move, or think or talk.

I want to be out in the world living a life. My body hurts. But my heart hurts more.

I wish I had a more positive update.|archive-url=https://archive.md/nV94i|archive-date=January 14, 2024|url-status=live|access-date=January 14, 2024}}</ref>
|-
|
|}

==See also ==
*[[Long COVID]]
*[[Post-COVID-19 illness]]
*[[List of famous people with ME, CFS, and/or FMS]]

==Learn more ==
*May 2021, [https://people.com/health/alyssa-milano-wants-people-to-get-vaccinated-as-she-continues-to-deal-with-long-haul-covid/ Alyssa Milano Says Long-Haul COVID Has 'Impacted Every Part of My Health'] - People
*April 2021, [https://people.com/health/gwyneth-paltrow-says-her-covid-symptoms-sometimes-come-back-a-little/ Gwyneth Paltrow Says Her Long-Haul COVID Symptoms Have Been 'Pretty Wild'] - People
*May 2022, [https://people.com/music/dave-navarro-details-his-experience-with-long-haul-covid/ Dave Navarro Details His Experience with Long-Haul Covid: 'Fatigue and Isolation is Pretty Awful'] - People

==References==
{{Reflist}}

[[Category:Lists]]
[[Category:People]]
[[Category:People with long COVID]]

Dextro-naltrexone

2024-04-28T22:45:28Z

Forestglip:added journal reference

Dextro-naltrexone

2024-04-28T22:39:30Z

Forestglip:created page

Jarred Younger

2024-04-28T21:02:39Z

Forestglip:/* Learn more */ Added Youtube channel. Changed "Younger Lab" to "Younger's Lab" because it is called something different

[[File:Younger.jpg|200px|right]]
'''Jarred W. Younger''' B.A. PhD. is an American researcher who leads the Neuroinflammation, Pain and Fatigue lab at the University of Birmingham, Alabama, [[United States]].<ref name="uab-profile">https://www.uab.edu/cas/psychology/people/faculty/jarred-younger</ref> He previously worked at the [[Stanford ME/CFS Initiative]] with [[Jose Montoya]], as an Assistant Professor involved in a notable study highlighting [[leptin]] levels and [[ME/CFS]].<ref name="stanfordleptin" /><ref name="pandoravideo">{{Cite web | title = Pandora Research Report: Jarred Younger - Leptin in the Role of Neuroinflammation, Pain and Fatigue | date = Jan 24, 2015 | url = https://www.youtube.com/watch?v=bFwAyrb5p34|language=en|access-date=2019-09-12}}</ref>

He is currently funded by the U.S. [[National Institutes of Health]] and Department of Defense to study new techniques for diagnosing and treating [[neuroinflammation]] in ME/CFS, [[fibromyalgia]] and [[Gulf War Illness]]. In particular his work focuses on the role of [[microglia]].

==Awards==
*2016 [[Ramsay Award]] Program grant recipient, sponsored by the [[Solve ME/CFS Initiative]] for Advanced Non-Invasive Analysis in ME/CFS Diagnosis and Treatment Decisions<ref>{{Cite web | url = https://solvecfs.org/2016-ramsay-award-program-results/ | title = 2016 Ramsay Award Program Results|website=Solve ME/CFS Initiative|language=en-US|access-date=2019-09-12}}</ref><ref>{{Cite web | url = https://solvecfs.org/advanced-non-invasive-analysis-in-mecfs-diagnosis-and-treatment-decisions/ | title = Advanced Non-Invasive Analysis in ME/CFS Diagnosis and Treatment Decisions | date = 2016-12-07 | website = Solve ME/CFS Initiative|language=en-US|access-date=2020-02-18}}</ref>

==Committees and boards==
===ME/CFS Collaborative Research Center===
Dr. Younger is a member of the Working Group which offers their expertise and resources to the [[ME/CFS Collaborative Research Center at Stanford University]].<ref>{{Cite web | url = https://bos.etapestry.com/prod/viewEmailAsPage.do?erRef=773.0.423082047&databaseId=OMF&mailingId=34274682&jobRef=773.0.506425459&key=b6b9237b3ebd1e462a5d11dbc5c4dae&personaRef=773.0.423082048&memberId=1348639685 | title = OMF grants $1.2M to Ramp Up Collaborative Research Center at Stanford University|website=bos.etapestry.com|access-date=2019-09-12}}</ref>

===ME/CFS Common Data Element (CDE) Project===
Chair (Overall/Cognitive) of the Neurologic/Cognitive/CNS Imaging Working Group of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Common Data Element (CDE) Project sponsored by the [[National Institute of Neurological Disorders and Stroke]] (NINDS) and the [[Centers for Disease Control and Prevention]] (CDC).<ref>{{Cite web | url = https://www.commondataelements.ninds.nih.gov/Myalgic%20Encephalomyelitis/Chronic%20Fatigue%20Syndrome#pane-138 | title = Complete Myalgic Encephalomyelitis/Chronic Fatigue Syndrome CDE Roster | last = | first = | authorlink = | date = | website = NIH|archive-url=|archive-date=|access-date=2019-10-11}}</ref>

==Notable studies==
*2010, [[Low dose naltrexone]] for the treatment of fibromyalgia: findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels<ref name="Younger2013">{{Cite journal | last = Younger | first = Jarred | authorlink = Jarred Younger | last2 = Noor | first2 = Noorulain | authorlink2 = | last3 = McCue | first3 = Rebecca | authorlink3 = | last4 = Mackey | first4 = Sean | authorlink4 = | date = Feb 2013 | title = Low-dose naltrexone for the treatment of fibromyalgia: Findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels | url = http://doi.wiley.com/10.1002/art.37734|journal=Arthritis & Rheumatism|language=en|volume=65|issue=2 | pages = 529–538|doi=10.1002/art.37734|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://onlinelibrary.wiley.com/doi/pdf/10.1002/art.37734 (Full Text)]
*2009, Fibromyalgia Symptoms Are Reduced by Low-Dose Naltrexone: A Pilot Study<ref name="Younger2009">{{Cite journal | last = Younger | first = Jarred | authorlink = Jarred Younger | last2 = Mackey | first2 = Sean | authorlink2 = | date = May 2009 | title = Fibromyalgia Symptoms Are Reduced by Low-Dose Naltrexone: A Pilot Study | url = https://academic.oup.com/painmedicine/article-lookup/doi/10.1111/j.1526-4637.2009.00613.x|journal=Pain Medicine|language=en|volume=10|issue=4 | pages = 663–672|doi=10.1111/j.1526-4637.2009.00613.x|issn=1526-2375|pmc=2891387|pmid=19453963|access-date=|quote=|via=}}</ref> - [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2891387/ (Full Text)]
*2013, Daily cytokine fluctuations, driven by [[leptin]], are associated with fatigue severity in [[chronic fatigue syndrome]]: Evidence of inflammatory pathology<ref name="stanfordleptin">{{Cite journal | last1 = Stringer | first1 = EA | last2 = Baker | first2 = KS | last3 = Carrol | first3 = IR | last4 =Montoya | first4 = JG | authorlink4 = Jose Montoya | last5 = Chu | first5 = L | authorlink5 = Lily Chu | last6 = Maeker | first6 = HT | last7 = Younger | first7 = JW | authorlink7 = Jarred Younger| title = Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: Evidence of inflammatory pathology | journal = J Transl Med.| date = Apr 9, 2013 | pmid = 23570606 | pmc = 3637529 | doi = 10.1186/1479-5876-11-93| url = http://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-11-93 }}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3637529/ (Full Text)]
*2017, Cytokine signature associated with disease severity in chronic fatigue syndrome patients<ref name="Montoya, 2017">{{Cite journal | last1 = Montoya | first1 = Jose G. | authorlink1 = Jose Montoya | last2 = Holmes | first2 = Tyson H. | authorlink2 = | last3 = Anderson | first3 = Jill N. | authorlink3 = | last4 =Maecker | first4 = Holden T. | authorlink4 = | last5 = Rosenberg-Hasson | first5 = Yael | authorlink5 = | last6 = Valencia | first6 = Ian J. | authorlink6 = Ian Valencia | last7 = Chu | first7 = Lily | authorlink7 = Lily Chu | last8 = Younger | first8 = Jarred W. | authorlink8 = Jarred Younger | last9 =Tato | first9 = Cristina M. | authorlink9 = | last10 = Davis | first10 = Mark M. | authorlink10 = Mark Davis| title = Cytokine signature associated with disease severity in chronic fatigue syndrome patients| journal = Proceedings of the National Academy of Sciences of the United States of America | volume = 114 | issue = 34 | page = E7150-E7158| date = 2017 | pmid = | doi = 10.1073/pnas.1710519114 }}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5576836/ (Full Text)]
*2019, Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy<ref name="Meuller2019">{{Cite journal | last = Mueller | first = Christina | authorlink = | last2 = Lin | first2 = Joanne C. | authorlink2 = | last3 = Sheriff | first3 = Sulaiman | authorlink3 = | last4 = Maudsley | first4 = Andrew A. | authorlink4 = | last5 = Younger | first5 = Jarred W. | authorlink5 = Jarred Younger | date = 2019-01-07 | title = Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy | url = http://link.springer.com/10.1007/s11682-018-0029-4|journal=Brain Imaging and Behavior|language=en|volume=|issue=|pages=|doi=10.1007/s11682-018-0029-4|issn=1931-7557|quote=|via=}}</ref> - [[pubmed:30617782|(Abstract)]]

==Talks and interviews==
*2011, [https://www.youtube.com/watch?v=ma_lY7NFLQk Chronic Pain in Women]
*2014, [https://www.youtube.com/watch?v=NoGfOsrarlY ME/CFS Alerts Episode 68: Jarred Younger Interviewed by Deborah Waroff]
*2015, [https://www.youtube.com/watch?v=TOqBYZg6Nmo Dr Jarred Younger - LDN Scientist - Low Dose Naltrexone]
*2015, [https://www.youtube.com/watch?v=bFwAyrb5p34 Pandora Research Report: Jarred Younger - Leptin in the Role of Neuroinflammation, Pain and Fatigue] (see [[Leptin]])
*2015, [https://www.youtube.com/watch?v=TH_upgDgLQ8 Jarred Younger, Ph.D. - Microglial Modulation in the Treatment of Fibromyalgia]
*2015, [[Spoonie Radio]] [https://www.youtube.com/watch?v=9UqkB6TBQ-A Ep 15: Jarred Younger] (see also [[Courtney Craig]])
*2016, [https://www.youtube.com/watch?v=wJB95m4FLa0 Chronic Fatigue Syndrome & Myalgic Encephalomyelitis: Can We Find Answers in the Brain? - Solve CFS Webinar]
*2016, [https://www.youtube.com/channel/UCoVoOvIX90IMEZCbBf_ycEA Younger Lab YouTube Channel: Series of ongoing talks on the work of the lab]
*2016, [http://selfhacked.com/2016/03/29/dr-jared-younger-cutting-edge-research-on-cfs-neuroinflammation-pain-and-fatigue/ Dr. Jarred Younger: Cutting Edge Research on CFS, Neuroinflammation, Pain, and Fatigue]
* 2018, [https://www.youtube.com/watch?v=rxdzaWD5wfU ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study]<ref>{{Cite web | url = https://www.youtube.com/watch?v=rxdzaWD5wfU | title = ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study | date = Dec 14, 2018|access-date=|website=YouTube | last = | first = | authorlink = Jarred Younger|archive-url=|archive-date=|publisher=SolveCFS}}</ref>
* 29 Sep 2018, ''How Brain Inflammation Causes ME/CFS'', given at Second Annual [[Community Symposium on the Molecular Basis of ME/CFS - 2017|Community Symposium on the Molecular Basis of ME/CFS]], sponsored by [[Open Medicine Foundation]] - [https://www.youtube.com/watch?v=8XrdSlpUQTE&list=PLl4AfLZNZEQPxjqF4ojAO3wdCFMeriNBK&index=14 (Video)]
*2019, [https://www.youtube.com/watch?v=JW-JYCcAnUg Dr. Jarred Younger - Neuroinflammation in ME/CFS]
*2022, [https://www.youtube.com/results?search_query=solve+me%2Fcfs+jarred+younger+june+23 Dr. Jarred Younger Presents: How We Can See ME/CFS Inflammation in the Brain - Solve ME Webinar]

==Articles and blogs==
*2015, [http://www.cortjohnson.org/blog/2015/07/15/the-neuroinflammation-man-jarred-younger-on-inflammation-fibromyalgia-and-chronic-fatigue-syndrome/ The Neuroinflammation Man: Jarred Younger on Inflammation, Fibromyalgia and Chronic Fatigue Syndrome] ([[Cort Johnson]])
*2015, [http://www.cortjohnson.org/blog/2015/01/09/younger-chronic-fatigue-fibromyalgia-lab/ New Chronic Fatigue Syndrome and Fibromyalgia Lab Opens: Jarred Younger Talks] (Cort Johnson)
*2016, [http://www.uab.edu/uabmagazine/features/prisoners-of-pain Prisoners of Pain - UAB magazine (Spring 2016)]
*2016, [https://selfhacked.com/2016/03/29/dr-jared-younger-cutting-edge-research-on-cfs-neuroinflammation-pain-and-fatigue/ Self Hacked on Dr Younger]
*2016, [https://www.youtube.com/channel/UCoVoOvIX90IMEZCbBf_ycEA/ Younger Lab YouTube Channel]
*2016, [http://www.cortjohnson.org/blog/2016/03/08/fibromyalgia-chronic-fatigue-syndrome-neuroinflammation-pain-fatigue-lab-makes-good/ Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) Research Center Makes Good] (Cort Johnson)
*2018, [https://www.healthrising.org/blog/2018/09/24/brain-fire-neuroinflammation-found-chronic-fatigue-syndrome-me-cfs/ Brain on Fire: Widespread Neuroinflammation Found in Chronic Fatigue Syndrome (ME/CFS)](Cort Johnson)
<blockquote>Younger's new approach looked at the entire [[brain]] and found signs of [[inflammation]] almost everywhere. When asked what could cause that, Younger said that any neurodegenerative/ neuroinflammatory disorder like [[Multiple sclerosis|MS]] or a severe brain injury that tweaks the [[microglia]] (immune cells in the brain) enough to produce a sustained period of inflammation, burns up the [[oxygen]] in the system. Once that happens, the cells resort to [[anaerobic metabolism]] and lactate builds up just as it does in the [[Muscle|muscles]] during [[exercise]].</blockquote>

==See also==
*[[Fibromyalgia]]
*[[Gulf War Illness]]
*[[Chronic fatigue syndrome]]
*[[Leptin]]
*[[Low dose naltrexone]]
*[[Microglia]]
*[[Neuroinflammation]]

==Learn more==
*[https://www.ncbi.nlm.nih.gov/pubmed/?term=Younger%20J%5BAuthor%5D&cauthor=true&cauthor_uid=24526250 Publications on the PubMed register - Jarred Younger]
*[https://sites.uab.edu/younger/ UAB Departmental Website]
*[https://www.uab.edu/cas/psychology/people/faculty/jarred-younger Biography at UAB]
*[https://www.facebook.com/Neuroinflammation-Pain-and-Fatigue-Laboratory-at-UAB-1543963919214695/ Facebook page for Younger's Lab at UAB]
*[https://www.youtube.com/@youngerlab YouTube channel for Younger's Lab at UAB]

==References==
{{Reflist}}

[[Category:Researchers]]
[[Category:US researchers]]

Buspirone challenge test

2024-02-18T03:11:08Z

Forestglip:changed to working link

The '''buspirone challenge test''' measures how much prolactin is released into the bloodstream when a single dose of the drug [[buspirone]] (a 5-HT1A serotonin receptor agonist) is orally administered. This test has been shown to distinguish [[ME/CFS]] patients from healthy controls, as well as being able to distinguish ME/CFS patients from people suffering with [[depression]].

Several small-scale studies discovered that ME/CFS patients release substantially more prolactin into the blood when given buspirone compared to healthy controls and depressed patients. It is theorized this greater release of prolactin may be due to increased sensitivity or up-regulation of the [[serotonin]] receptors in the [[hypothalamus]] in ME/CFS,<ref name=":0" /> though this theory is questioned, and an alternative hypothesis is that the prolactin release may be elicited by a [[dopamine]] receptor blockade (buspirone is also a dopamine D2 receptor antagonist).<ref name=":2" />

It is also observed that the degree of [[Sleep dysfunction|shift in the sleep/wake cycle]] that an ME/CFS patient suffers from correlates with the degree of prolactin they release in the buspirone challenge.<ref name=":1" />

Women display a large variation in their prolactin response to buspirone throughout the [[menstrual cycle]] (with maximum responses occurring premenstrually). By contrast, responses in men are consistent and reproducible.<ref>{{Cite journal | last = Dinan | first = T.G. | last2 = Barry | first2 = S. | last3 = Yatham | first3 = L.N. | last4 = Mobayed | first4 = M. | last5 = O'Hanlon | first5 = M. | date = Apr 1990 | title = The reproducibility of the prolactin response to buspirone: relationship to the menstrual cycle | url =https://www.ncbi.nlm.nih.gov/pubmed/2380543 | journal = International Clinical Psychopharmacology | volume = 5 | issue = 2 | pages = 119–123|issn=0268-1315|pmid=2380543}}</ref> However Bakheit et al<ref name=":0" /> when testing women administered the buspirone challenge exclusively in the luteal phase of the menstrual cycle, and consistently found significantly increased prolactin responses in women with ME/CFS compared to female healthy controls. Some preliminary work has also shown that the buspirone challenge is fairly reproducible in postmenopausal females.<ref>{{Cite journal | last = Sharma | first = A | last2 = Oyebode | first2 = F | last3 = Kendall | first3 = MJ | last4 = Jones | first4 = DA | date = Jan 2001 | title = Recovery from chronic fatigue syndrome associated with changes in neuroendocrine function. | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1280066/ | journal = Journal of the Royal Society of Medicine | volume = 94 | issue = 1 | pages = 26–27|doi=10.1177/014107680109400107|issn=0141-0768|pmc=1280066|pmid=11220065}}</ref>

== ME/CFS studies ==

====== Bakheit et al 1992 ======
The Bakheit 1992 study<ref name=":0">{{Cite journal | last = Bakheit | first = A.M. | last2 = Behan | first2 = P.O. | last3 = Dinan | first3 = T.G. | last4 = Gray | first4 = C.E. | last5 = O'Keane | first5 = V. | date = 1992-04-18 | title = Possible upregulation of hypothalamic 5-hydroxytryptamine receptors in patients with postviral fatigue syndrome. | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1881733/ | journal = BMJ : British Medical Journal | volume = 304 | issue = 6833 | pages = 1010–1012|issn=0959-8138|pmc=1881733|pmid=1586780}}</ref> tested 15 ME/CFS patients, 13 patients with depression, and 13 healthy controls using the buspirone challenge test. They found that although baseline blood serum prolactin levels were very similar for all three groups, a single 60 mg oral dose of buspirone stimulated the release of significantly higher amounts of prolactin in ME/CFS patients than it did in healthy controls and depressed patients, indicating that the buspirone challenge test can distinguish ME/CFS patients from controls, as well as distinguishing ME/CFS from depression. One hour after buspirone administration, the mean serum prolactin level in male ME/CFS patients was 2.25 times that of male healthy controls, and in female patients 3.7 times that of female controls (in females, the buspirone challenge test was conducted during the luteal phase of menstruation).

The administration of buspirone was also found to cause excessive [[fatigue]], [[Dizziness|lightheadedness]] and nausea in ME/CFS patients but not in controls. The authors hypothesized that the prolactin release in response to buspirone administration is mediated by 5-hydroxytryptamine ([[serotonin]]) receptors since the release can be blocked by specific serotonin antagonists such as methysergide and metergoline. The authors said their findings suggest an increased sensitivity of serotonin receptors in the hypothalamus of ME/CFS patients.

====== Richardson 1995 ======
[[John Richardson|Dr John Richardson]]'s 1995 study<ref name=":1">{{Cite journal | last = Richardson | first = John | date = Jan 1995 | title = Disturbance of Hypothalamic Function and Evidence for Persistent Enteroviral Infection in Patients with Chronic Fatigue Syndrome | url =https://www.tandfonline.com/doi/abs/10.1300/J092v01n02_05 | journal = Journal of Chronic Fatigue Syndrome|language=en | volume = 1 | issue = 2 | pages = 59–66|doi=10.1300/j092v01n02_05|issn=1057-3321}}</ref> administered the buspirone challenge test to 25 ME/CFS patients (who were positive for chronic [[enterovirus]] infection, with enteroviral VP1 protein detected in their blood) as well as 25 controls. In this study Richardson measured the blood plasma prolactin level three times: the night before the test, then again in the morning just before the test, and finally again 1 hour after administering a 50 mg oral dose of buspirone as a buspirone challenge. Richardson found that patients and controls did not differ in their basal levels of plasma prolactin before the test, but the mean buspirone-stimulated release of prolactin in ME/CFS patients was 3 times greater than the release stimulated in healthy controls, a highly significant difference.

In terms of the ability of this test to accurately discriminate between patients and healthy controls, Richardson found that a prolactin ratio of 2.5 and upwards encompasses 87% of patients, and a ratio of less than 2.5 encompasses a similar proportion of controls. So this means the test sensitivity and specificity are both 87% (the prolactin ratio refers to the person's buspirone-stimulated blood prolactin level, divided by the mean buspirone-stimulated prolactin level of the healthy controls).

Richardson also found that the severity of [[Sleep dysfunction|shift in the sleep/wake cycle]] that the ME/CFS patients suffered from (which he termed "owl syndrome") correlated with the degree of buspirone-stimulated prolactin release he measured in the buspirone challenge test.

====== Cleare et al 1995 ======
The [[Anthony Cleare|Cleare]] 1995 study<ref>{{Cite journal | last = Cleare | first = A.J. | last2 = Bearn | first2 = J. | last3 = Allain | first3 = T. | last4 = McGregor | first4 = A. | last5 = Wessely | first5 = S. | last6 = Murray | first6 = R.M. | last7 = O'Keane | first7 = V. | date = 1995-08-18 | title = Contrasting neuroendocrine responses in depression and chronic fatigue syndrome | url =https://www.ncbi.nlm.nih.gov/pubmed/8550954 | journal = Journal of Affective Disorders | volume = 34 | issue = 4 | pages = 283–289|issn=0165-0327|pmid=8550954}}</ref> found the selective serotonin-releasing agent d-fenfluramine elicited a high degree of prolactin release in ME/CFS patients, an intermediate degree of release in healthy controls, and a low degree of release in depressed patients. The prolactin response to d-fenfluramine appears to be mediated by indirect activation of 5-HT2 receptors without 5-HT1A receptors playing a significant role.<ref name=":2" />

====== Sharpe et al 1996 ======
The [[Michael Sharpe|Sharpe]] 1996 study<ref name=":2">{{Cite journal | last = Sharpe | first = M. | last2 = Clements | first2 = A. | last3 = Hawton | first3 = K. | last4 = Young | first4 = A.H. | last5 = Sargent | first5 = P. | last6 = Cowen | first6 = P.J. | date = 1996-11-04 | title = Increased prolactin response to buspirone in chronic fatigue syndrome | url =https://www.ncbi.nlm.nih.gov/pubmed/8938208 | journal = Journal of Affective Disorders | volume = 41 | issue = 1 | pages = 71–76|issn=0165-0327|pmid=8938208}}</ref> orally administered 0.5 mg/kg of buspirone in a single dose to 11 ME/CFS patients and 11 healthy controls, and then measured their plasma prolactin levels every 30 minutes for the next 4 hours. They found ME/CFS patients exhibited both a significantly higher buspirone-stimulated plasma prolactin peak, as well as a faster time to peak, than healthy controls. ME/CFS patients also experienced more nausea and lightheadedness than controls in response to the buspirone.

However, no significant differences in growth hormone secretion after stimulation by buspirone were observed in these two groups. The authors thus question whether ME/CFS patients' exaggerated prolactin response to buspirone is caused by increased hypothalamic serotonin receptor sensitivity, as they point out both prolactin and growth hormone release is elicited by activation of hypothalamic 5-HT1A receptors, and thus one might expect an exaggerated release of both these hormones in ME/CFS patients. But since ME/CFS patients' growth hormone responses to buspirone were not significantly raised compared to controls, the authors suggest this casts a degree of doubt (although with some caveats) on the hypothesis of increased hypothalamic serotonin receptor sensitivity in ME/CFS. As an alternative hypothesis, the authors point out buspirone binds to dopamine D2 receptors, and suggest the ability of buspirone to stimulate prolactin release might instead be primarily mediated by a dopamine receptor blockade.

====== Sharma et al 2001 ======
The Sharma 2001 case study<ref>{{Cite journal | last = Sharma | first = A | last2 = Oyebode | first2 = F | last3 = Kendall | first3 = MJ | last4 = Jones | first4 = DA | date = Jan 2001 | title = Recovery from chronic fatigue syndrome associated with changes in neuroendocrine function. | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1280066/ | journal = Journal of the Royal Society of Medicine | volume = 94 | issue = 1 | pages = 26–27|doi=10.1177/014107680109400107|issn=0141-0768|pmc=1280066|pmid=11220065}}</ref> observed that the exaggerated buspirone-stimulated prolactin release of an ME/CFS patient returned to normal once the patient had recovered from ME/CFS.

== Other studies ==
* A 1994 study<ref>{{Cite journal | last = Yatham | first = L.N. | date = 1994-04-15 | title = Buspirone induced prolactin release in mania | url = https://www.ncbi.nlm.nih.gov/pubmed/8038299/ | journal = Biological Psychiatry | volume = 35 | issue = 8 | pages = 553–556|issn=0006-3223|pmid=8038299}}</ref> on 11 patients with '''mania''' found no differences in buspirone-induced prolactin release between patients and healthy controls.
* A 2001 study<ref>{{Cite journal | last = Dinan | first = T.G. | last2 = Mahmud | first2 = N. | last3 = Rathore | first3 = O. | last4 = Thakore | first4 = J. | last5 = Scott | first5 = L.V. | last6 = Carr | first6 = E. | last7 = Naesdal | first7 = J. | last8 = O'Morain | first8 = C.A. | last9 = Keeling | first9 = P.W. | date = Oct 2001 | title = A double-blind placebo-controlled study of buspirone-stimulated prolactin release in non-ulcer dyspepsia--are central serotoninergic responses enhanced? | url = https://www.ncbi.nlm.nih.gov/pubmed/11564001 | journal = Alimentary Pharmacology & Therapeutics | volume = 15 | issue = 10 | pages = 1613–1618|issn=0269-2813|pmid=11564001}}</ref> on 50 patients with non-ulcer '''dyspepsia''' found patients displayed greater prolactin release in response to the buspirone challenge than the healthy controls. This greater prolactin release was observed in dyspepsia patients both with and without Helicobacter pylori infection. Interestingly, as with ME/CFS, enterovirus infection is associated with functional dyspepsia.<ref>{{Cite journal | last = Chia | first = John K. | last2 = Chia | first2 = Andrew Y. | last3 = Wang | first3 = David | last4 = El-Habbal | first4 = Rabiha | date = 2015 | title=Functional Dyspepsia and Chronic Gastritis Associated with Enteroviruses |url =http://file.scirp.org/Html/2-1900264_55465.htm | journal = Open Journal of Gastroenterology|language=en | volume = 05 | issue = 04 | pages = 21–27|doi=10.4236/ojgas.2015.54005|issn=2163-9450}}</ref>
* A 2002 study<ref>{{Cite journal | last = Condren | first = Rita M. | last2 = Dinan | first2 = Timothy G. | last3 = Thakore | first3 = Jogin H. | date = Aug 2002 | title = A preliminary study of buspirone stimulated prolactin release in generalised social phobia: evidence for enhanced serotonergic responsivity? | url = https://www.ncbi.nlm.nih.gov/pubmed/12126875 | journal = European Neuropsychopharmacology: The Journal of the European College of Neuropsychopharmacology | volume = 12 | issue = 4 | pages = 349–354|issn=0924-977X|pmid=12126875}}</ref> on 14 patients with generalized social anxiety found patients had greater prolactin release in response to the buspirone challenge than healthy comparison subjects.
* A 2005 study<ref>{{Cite journal | last = Shim | first = Joo-Cheol | last2 = Kim | first2 = Young-Hoon | last3 = Kelly | first3 = Deanna L. | last4 = Lee | first4 = Jung-Goo | last5 = Conley | first5 = Robert R. | date = 2005 | title = Tardive dyskinesia predicts prolactin response to buspirone challenge in people with schizophrenia | url = https://www.ncbi.nlm.nih.gov/pubmed/15939977 | journal = The Journal of Neuropsychiatry and Clinical Neurosciences | volume = 17 | issue = 2 | pages = 221–226 |doi=10.1176/jnp.17.2.221|issn=0895-0172|pmid=15939977}}</ref> on '''schizophrenic''' patients found those without tardive dyskinesia (TD) had decreased prolactin responses to buspirone compared to healthy controls (which the authors suggest reflects dopamine D2 receptor down-regulation and/or serotonergic system insensitivity), whereas schizophrenic patients with TD showed no significant difference in their prolactin response to buspirone.
* A 2007 study<ref>{{Cite journal | last = Navinés | first = Ricard | last2 = Gómez-Gil | first2 = Esther | last3 = Martín-Santos | first3 = Rocío | last4 = de Osaba | first4 = María J. Martínez | last5 = Escolar | first5 = Ginés | last6 = Gastó| first6 = Cristóbal | date = Aug 2007 | title = Hormonal response to buspirone is not impaired in major depression | url =https://www.ncbi.nlm.nih.gov/pubmed/17563921 | journal = Human Psychopharmacology | volume = 22 | issue = 6 | pages = 389–395 |doi=10.1002/hup.862|issn=0885-6222|pmid=17563921}}</ref> on 30 patients with '''major depression''' found no differences in buspirone-induced prolactin release between patients and healthy controls.

== References ==
{{Reflist}}
[[Category:Medical tests]]