MEpedia - User contributions [en]

Low dose naltrexone

2024-08-08T14:51:20Z

Paul Götze:Fix date formats in references

'''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=2023-11-01|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=2023-04-03|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=2024-06-07}}</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 prescription, 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 ===
'''Roseway Labs''' supplies LDN in the EU. 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]]

Primer for the public

2024-08-08T14:02:22Z

Paul Götze:/* Notable studies */ Fix list item hierarchy (indentation)

{{mbox|text= Editors: Edits to this Primer may require the same edits to the other [[:Category:Primers|Primers]].}}
'''Primer for the public''' offers a broad audience detailed information on [[myalgic encephalomyelitis]] (ME) and [[chronic fatigue syndrome]] (CFS), complex, chronic, and poorly understood medical conditions. ME was first categorized as a [[Nervous system|neurological]] disease by the [[World Health Organization]] (WHO) in 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}}</ref> [[Chronic fatigue syndrome|CFS]] was first formally defined by the United States [[Centers for Disease Control|Centers for Disease Control and Prevention]] (CDC) in 1988 as a framework for researching unexplained [[chronic fatigue]] (CF) associated with a [[mononucleosis]]-like syndrome. There remains a lack of consensus among members of the medical and research communities regarding the equivalence of [[Myalgic encephalomyelitis|ME]] and CFS. Some believe that CFS is intended to describe the same disease entity as ME, while others believe that they are distinct illnesses but with overlapping symptom profiles. In deference to this lack of consensus, the combined term [[ME/CFS]] is often used.

<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="IOM2015MECFS"/> A patient can have many more symptoms<ref name="whatis"/> and meet different criteria. [[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 = National Academies|archive-url=|archive-date=|access-date=}}</ref><ref name="guide">{{Cite web|url=http://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness {{!}} Clinicians Guide | last = | first = | date = 2015 | website = Nation Academies|archive-url=|archive-date=|access-date=}}</ref> and the patient may have other symptoms.<ref name="guide"/>{{Rp|9}} 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 | 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="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 = M C | last = Sharpe | first2 = L C | last2 = Archard | first3 = J E | last3 = Banatvala | first4 = L K | last4 = Borysiewicz | first5 = A W | last5 = Clare | first6 = A | last6 = David | first7 = RH | last7 = Edwards | first8 = KE | last8 = Hawton | first9 = HP | last9 = Lambert}}</ref> are used for diagnosing [[chronic fatigue syndrome]] (CFS), they are both overly broad and there is criticism that patients are being [[misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome|misdiagnosed]] in both clinical and research settings as having [[Chronic fatigue syndrome|CFS]] when in fact they are suffering from the symptom [[chronic fatigue (symptom)|chronic fatigue]] (CF).<ref name="ICC"/><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>{{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> 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="Inews2017">{{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="Times2019">{{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, CFS.<ref name="spence"/> Some people with [[Addison's disease|adrenal failure]], [[idiopathic chronic fatigue]], or other fatiguing illnesses are erroneously diagnosed with CFS.<ref name="Devasahayam2012">{{Cite journal | last = Devasahayam | first = Anoop | author-link = | last2 = Lawn | first2 = Tara | author-link2 = | last3 = Murphy | first3 = Maurice | author-link3 = | 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> CF is a symptom of many diseases, and illnesses, and should not be confused with the grossly misnamed disease CFS.<ref name="Carruthers, 2003" />

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

"The most common overlapping condition with ME/CFS is [[fibromyalgia]]."<ref name="ICC2011primer" /><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 name="Natelson2019">{{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 being abandoned in the [[United Kingdom|UK]] due to ineffectiveness and high rates of harm.<ref name="OxfordBrookesSurvey" /><ref name="niceng206"/> The 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 [[post-exertional malaise|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]]]]
== 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 | author-link5 = | 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 name="grandround"/> 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 name="IACFSME2014primer">{{citation | 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> 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 | first2 = Leonard | last2 = 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 who does not recover from a [[flu-like illness]], [[mononucleosis]] or another [[HHV|herpesvirus]], [[Q fever]], an unidentified [[virus]], or [[:Category:Infectious agents|other infection]] meets one or more [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome|diagnostic criteria for either ME, CFS, or ME/CFS]].<ref name="IOM2015MECFS-Ch7">{{citation | last=Institute of Medicine | authorlink = Institute of Medicine | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|location=Washington, DC|publisher=The National Academies Press | date = 2015 | url=https://www.ncbi.nlm.nih.gov/books/NBK284902/
|isbn=0309316898|pmid = 25695122
|doi = 10.17226/19012|at=Chapter 7}}</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 name="IACFSME2014primer"/><ref name="webmd">{{Cite web|url=http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms | title = Chronic Fatigue Syndrome - Symptoms | website = WebMD|access-date=2021-11-22}}</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="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 name="grandround">{{Cite web|url=https://www.cdc.gov/grand-rounds/pp/2016/20160216-presentation-chronic-fatigue-H.pdf | title = Public Health Grand Rounds - Chronic Fatigue Syndrome - Advancing Research and Clinical Education | last = | first = | authorlink = | date = |website=[[Centers for Disease Control and Prevention]] | 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 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.com|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 = Kaufman | first = David | 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="guide" /> Some CFS patients can work with [https://www.dol.gov/general/topic/disability/jobaccommodations job accommodations] but between 1 in 3 and 1 in 2 patients become unable to work 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 | 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-Ch6">{{Cite book | last = Institute of Medicine | first = | date = 2015-03-16 | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://www.nap.edu/read/19012/chapter/8|publisher=The National Academies Press|language=en|chapter=Pediatric ME/CFS Chapter 6 | page = 181|doi=10.17226/19012|quote=}}</ref> 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 news | 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|website = Open Medicine Foundation | date = 2016-06-25|access-date=2018-08-11|language=en-US}}</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 | 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="guide" /><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? – American ME and CFS 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="facts">{{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 = nationalacademies.org|archive-url=|archive-date=|access-date=}}</ref><ref name="IOM2015MECFS">{{Cite book | last = Institute of Medicine | authorlink = Institute of Medicine | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|location=Washington, DC|publisher=The National Academies Press | date = 2015 | url=https://www.ncbi.nlm.nih.gov/books/NBK284902/|isbn=0309316898 | pmid = 25695122|doi = 10.17226/19012 }}</ref>{{Rp|32}} and 90% of people with ME/CFS are undiagnosed.<ref name="whatis"/>
*[[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome|Prognosis]]
:The prognosis for a patient diagnosed with ME/CFS isconsidered 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>

== 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 name="symptoms"/> 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 [[post-exertional malaise|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]] or [[cognitive dysfunction]], [[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 new CDC (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, mental, or emotional exertion]] 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="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=|url-status=|access-date= | authorlink = |website=[[Open Medicine Foundation]]}}</ref> there is a payback or [[Marked, rapid physical and/or cognitive fatigability in response to exertion|worsening]] [[List of symptoms in ME CFS|ME/CFS symptoms]] which can be [[Delayed onset of post-exertional symptoms|delayed 24-72 hours]], or sometimes 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="whatis" /><ref name="webmd" /> 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="guide" />
==== Other possible symptoms ====
*[[chronic pain]]
*[[immune system]]
*[[:Category:Neurological_signs_and_symptoms|neurological signs and symptoms]] See also: [[neuroinflammation]]
*[[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'''
*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide] via The [[Institute of Medicine report]]
*[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]

== 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]].

==Drugs, treatments, and therapies ==
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. There are many [[:Category:Potential_treatments|potential treatments]], though their evidence base is limited, as most research into treatments has gone into unsuccessful 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 enormous 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=|url-status=|language=en-US}}</ref><ref>{{Cite news | url=http://cdn2.hubspot.net/hubfs/150154/docs/Hemispherx-Executive-Informational-Overview-11-27-16.pdf?__hssc=75734090.1.1482434979170&__hstc=75734090.d484bcfed76166643c7e8f36a0c76637.1482434979170.1482434979170.1482434979170.1&__hsfp=4187238277&hsCtaTracking=afde00a7-b0f3-44d3-b072-5febf480affb%7Cb8ddd437-9009-4bb9-a8fe-65a376fff33f | title = Hemispherx Biopharma, Inc. Executive Informational Overview | last = | first = | date = Nov 27, 2016|work=Crystal Research Associates|access-date=|archive-url=|archive-date=|url-status=|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=|url-status=|access-date=2018-08-13}}</ref> In July 2018, Hemispherx Biopharma, Inc 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=|url-status=|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 | 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 | 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 would 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="monitor" /> For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen OI.<ref name="monitor" />

===Controversy===
[[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]].
Until recently psychiatry has taken an [[Psychologization|inappropriate lead]] and treatment path for a biological disease. In the [[United Kingdom|UK]], [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) were employed by ME Clinics until 2021. [[Exercise]] exacerbates symptoms and can further harm patients.<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><ref>[https://you.38degrees.org.uk/petitions/get-and-cbt-are-dangerous-treatments-for-me-patients GET and CBT are dangerous treatments for ME patients - Petition - 38 Degrees - By Michael Evison]</ref> [[Depression]] and [[anxiety]] drugs have been utilized, usually with poor results.<ref name="Carruthers, 2003" /><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>

Treating a biological disease as a mental illness is not cost-effective. The drugs are expensive and [[biomedical research]] is not pursued. People struck down and disabled with ME/CFS are labeled with a mental health issue; disability insurance, having clauses excluding a mental health illness/disease, stop any payment or shorten the payout time-frame.<ref>[http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really? - By: David Tuller Virology Blog]</ref><ref>[https://www.psychologytoday.com/blog/turning-straw-gold/201212/physical-illnesses-may-soon-be-labeled-mental-disorders Physical Illnesses May Soon Be Labeled “Mental Disorders” - Psychology Today - Toni Bernhard, J.D.]</ref><ref>[http://www.theguardian.com/society/2004/apr/28/equality.mentalhealth People with mental illness face widespread discrimination - The Guardian - David Batty]</ref>

====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]].
Until 2021, [[graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]] were typically employed in the UK, [[Ireland]] and some parts of Europe through ME Clinics. They are highly controversial and not recommended by patients, patient advocates, and research organizations nor by many doctors or researchers outside of the UK.<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> 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.
*[[Doctor Speedy]] was also seriously harmed by GET.

===Claims of curative treatments===
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 [[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|other medical 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 name="CDC-diagnosis">{{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 name="approach">{{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 diagnosed with CFS that recovered in a relatively short period of time after rest, supplementation, and diet changes,<ref name="Inews2017" /><ref name="Times2017" /><ref name="ABC2018" /><ref name="Times2019" /> these athletes 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}}</ref> while some people with [[anemia]], [[allergy|allergies]], [[idiopathic chronic fatigue]] or [[:Category:Potential comorbidities|other fatiguing illnesses]] can be [[misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome|misdiagnosed with CFS]].<ref name="Carruthers, 2003" />

=== 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 [[National Institutes of Health]] (NIH), the [[Centers for Disease Control and Prevention]] (CDC) reinstating and increasing funding and education based on [[Institute of Medicine report]] recommendations and the [[U.S. Department of Health and Human Services|Health and Human Services]] (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> #[[MEAction]] 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 [[graded exercise therapy|GET]] and [[cognitive behavioral therapy|CBT]] recommendations have been removed.<ref>[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - 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=|url-status=}}</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.

== Recommended viewing ==

==== Documentary ====
'''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]]

==== Short film ====
*[[The Last Great Medical Cover Up]] is a [https://vimeo.com/143904110 UK short Film on Vimeo] with several patient interviews. (2015)

==== News media ====
*[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]] TV report, South Africa (2017)

==== Talks and interviews ====
*Jennifer Brea is interviewed for the upcoming BRIC Flix on her ME/CFS disease experience and her 2017 documentary film [[Canary in a Coal Mine]] (now called Unrest) at [https://www.youtube.com/watch?v=zeIefNymFuw 5:30 and 10:20.] (2016)

== Recommended reading ==
====Government health organizations====
:'''US'''

:[[Centers for Disease Control]] (CDC)
:*[https://www.cdc.gov/me-cfs/me-cfs-children/factsheets.html ME/CFS in Children Fact Sheets] (2017) Fact Sheets for Healthcare Professionals, Parents/Guardians, Education Professionals

:[[National Institutes of Health]] (NIH)
:*[[Moving Toward Answers in ME/CFS - NIH Director's Blog (2017)]]

:[[Institute of Medicine]] (IOM)
:*[https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts] From the [[Institute of Medicine report]]. (2015)

:*[https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness] Report Brief on the Institute of Medicine report. (2015)

==== ME/CFS research foundations ====
:'''UK'''

:[[Invest in ME]]
:*[http://www.investinme.org/faqs.shtml Frequently Asked Questions]

:'''US'''

:[[Open Medicine Foundation]] (OMF)
:*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?]

==== ME/CFS organizations ====
:'''Australia'''

:[[Emerge Australia]]
:*[https://emerge.org.au/about-mecfs/diagnosis/mecfs/ What is ME/CFS?]

:'''UK'''

:[[ME Association]]
:*[http://www.meassociation.org.uk/about/what-is-mecfs/ What is ME/CFS?]

:[[Tymes Trust]] (Pediatric)
:*[http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs] (2016)

:'''US'''
:[[Massachusetts CFIDS/ME & FM Association]]
:*[https://www.masscfids.org/cfids-me-cfs About ME/CFS]

:[[Solve ME/CFS]]
:*[https://drive.google.com/file/d/0B6UlcglLsyp7WkgxbmdaWXVhbVU/view What, Exactly, is a Biomarker Anyway? And Why Don't We Have One for ME/CFS?] (2017)

:*[http://solvecfs.org/what-is-mecfs/ Get the Facts about ME/CFS] (2016)

:*[http://solvecfs.org/wp-content/uploads/2013/06/SMCI_MECFS_FactSheet.pdf What is ME/CFS?] (2013)

:'''International'''
:[[MEAction]]
:*[http://www.meaction.net/wp-content/uploads/2015/10/ME-Facts-v2-1.pdf Facts about Myalgic Encephalomyelitis (ME) (Also called chronic fatigue syndrome or CFS)] (2015)

:*[http://www.meaction.net/reports-and-fact-sheets/?utm_content=bufferc2125 Reports and Fact Sheets] (2015)

==== Other organizations ====
:*[https://rarediseases.org/ National Organization for Rare Disorders] (NORD) has a section for [https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis]

==== Other reading====
:*[http://thirdage.com/what-do-you-do-when-a-loved-one-becomes-chronically-ill/ What Do You Do When a Loved One Becomes Chronically Ill?] By Suzan Jackson

==History==
=== 1980's to present day ===
*''[[Osler's Web]] i''s 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 reports of loved ones who have [[Causes of death|died due to ME/CFS]].<ref name="officialdeath">[https://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome/</ref>

=== Disease names and acronyms around the world ===
The [[United States]] and [[Australia]] usually refer to the disease as CFS, (chronic fatigue syndrome). Many European countries, the [[United Kingdom]] and [[Ireland]] mostly use the name ME, (Myalgic Encephalomyelitis). Most countries, as well as doctors and researchers worldwide, will also use the acronym ME/CFS. ''See:'' [[Definitions of ME and CFS]].)

The symptom [[chronic fatigue]] (CF) should not be used in place of the name [[chronic fatigue syndrome]] (CFS); this has been a source of confusion of CF the symptom and CFS the disease. CFS is a grossly misnamed disease whereas CF is a symptom of many diseases, illnesses and drug therapies.<ref>[http://chronicfatigue.about.com/od/whatischronicfatigue/a/cf_vs_cfs.htm?utm_content=bufferda812 Chronic Fatigue vs. Chronic Fatigue Syndrome - One's a Symptom, One's a Disease - About.com Health FMS/ME/CFS By Adrienne Dellwo]</ref><ref>[http://arthritis.about.com/od/fatigue/f/chronicfatigue.htm Chronic Fatigue Versus Chronic Fatigue Syndrome What's the Difference? - About.com Health FMS/ME/CFS - By Carol Eustice]</ref> Dr. [[Jarred Younger]] explains chronic fatigue and begins by stating "Fatigue is not a disease and it is not even a symptom. So fatigue is a alarm system and the most general alarm system the body has." [https://www.youtube.com/watch?v=wJB95m4FLa0 Webinar with Jarred Younger, Ph.D. (@6:04-7:54)]

==== Myalgic Encephalomyelitis (ME) ====
Although many similar diseases have occurred for centuries, in the 1920s - 1940s there were sporadic outbreaks around the world<ref>[[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|List of outbreaks]]</ref>, of both poliomyelitis, and what Dr. [[Melvin Ramsay]] called 'Benign Myalgic Encephalomyelitis' ('benign because it is disabling but not usually fatal). In 1969, the World Health Organisation included "Myalgic Encephalitis' in its 'International Classification of Diseases' (ICD), under the category 'Diseases of the Nervous System', code G93.3.<ref>[http://www.hfme.org/thewhoandme.htm The WHO and M.E. (in brief) - The Hummingbirds' Foundation for M.E.]</ref><ref>[http://www.meactionuk.org.uk/ME_CFS_TERMINOLOGY.pdf ME/CFS Terminology - By: Margaret Williams - April - 2009]</ref>

==== From ME to CFS ====
[[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]], Lake Tahoe, NV, US, experienced an outbreak during 1984-1985. The CDC were sent to investigate. Dr. [[Anthony Komaroff]] studied cases from the outbreak and eventually he and a body of clinicians settled on the name "Chronic Fatigue Syndrome".<ref>[https://www.masscfids.org/diagnosis Diagnosis of ME/CFS - What is a Syndrome]</ref> Dr. Komaroff discusses the name emerging in the documentary film Forgotten Plague.

==== From CFS to 'any unexplained fatigue' ====
Various groups invented new definitions, that required only 'medically unexplained fatigue' such as [[Reeves criteria]] and [[Oxford criteria]]. Fatigue is a common symptom in any population, with many different causes. These new definitions allowed some psychiatrists to claim that CFS could be 'cured' through exercise and positive thinking which has been promoted through the [[PACE trial]] and that this 'cure' also applied to people who are severely ill with Myalgic Encephalomyelitis.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/19855350/ A review on cognitive behavioral therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based but also potentially harmful for many patients with ME/CFS.]</ref><ref>[http://www.meassociation.org.uk/2009/12/statements-of-concern-about-cbtget-provided-for-the-high-court-judicial-review/ Statements of concern about CBT/GET provided for the High Court judicial review - ME Association]</ref>

==== SEID name and diagnostic criteria ====
[[Systemic Exertion Intolerance Disease]] (SEID) is a diagnostic criteria proposed by the [[Institute of Medicine]] (IOM) in the [[Institute of Medicine report]]. This clinical criteria was developed for doctors in the United States to diagnose at 6 months instead of years or even decades. Doctors are encouraged to perform tests prior to six months, such as a [[Tilt table test]] or sleep study if symptoms require further investigation. Treating symptoms such as [[orthostatic intolerance]] or a sleep disorder can begin prior to the six months needed to diagnose.<ref name="IOM2015MECFS" />

=== Different diagnostic criteria used worldwide ===
==== Currently used ====
<div style="column-count:2;">
*[[Canadian Consensus Criteria]] (CCC)
*[[Fukuda criteria]] (Sometimes referred to as CDC Criteria)
*[[International Consensus Criteria]] (ICC)
*[[Oxford criteria]]
*[[Reeves criteria]] (Sometimes called [[Empirical definition]])
*[[SEID]] or IOM 2015 (Used by CDC on their [https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html ME/CFS Diagnostic Criteria for Healthcare providers] page.)<ref name="niceng206"/>
</div>

==== Currently not in use ====

<div style="column-count:2;">
*[[Oxford definition]]
*[[Holmes criteria]]
*[[London criteria]]
*[[Nightingale definition]]
*[[NIOF]]
*[[Ramsay definition]]
</div>

The different criteria used from one doctor to another and researcher to researcher results in confusion for doctors trying to diagnose, poor research and discord between patients, medical professionals, and charitable organizations. Adding to the confusion is a clinical criteria will at times be used in research and a research criteria used by a clinician to diagnose. Many US researchers will use Fukuda (using the PEM "option") and CCC in a single research project.<ref>[http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/ Study says scientists must agree on classifying patients - By: Sasha Nimmo - #MEAction]</ref> The [[NIH Post-Infectious ME/CFS Study]] will be using four: SEID, Fukuda, CCC and Reeves.<ref>[http://www.meaction.net/2016/02/09/positive-answers-to-initial-questions-re-nih-clinical-center-protocol/#comment-2067 Positive Answers to Initial Questions re NIH Clinical Center Protocol - #MEAction - Comments Section - "Polly"]</ref> The ME/CFS community wanted to participate in this study's design.<ref>[https://my.meaction.net/petitions/nih-put-me-cfs-patients-at-heart-of-research-design-process NIH: Put ME/CFS patients at heart of research design process - Petition - #MEAction]</ref><ref>[https://my.meaction.net/petitions/keep-psychiatry-out-of-nih-study-on-me-cfs PETITION - Keep Psychiatry Out of NIH Study on ME/CFS - #MEAction - By: Mary Schweitzer]</ref>

==Notable studies==
* 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=|url-status=|access-date=2019-01-17 | first3 = Sulaiman | last3 = Sheriff | first4 = Andrew | last4 = Maudsley| 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=|url-status=|publisher=SolveCFS}}</ref> (TALK)

* 2016, [[Metabolic features of chronic fatigue syndrome]]
* 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)]
*2015, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome<ref name="Zeineh2015">{{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 = Jane Norris | 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]]]]

*[[List of enterovirus infection studies]]
*[[Cytokine#Notable_studies|Cytokine ("Notable studies")]]

== See also ==
*[[Severe and very severe ME]]
*[[Pacing]] - a key way to manage ME/CFS
*[[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|List of abnormal findings in ME/CFS]]
*[[Fibromyalgia]]
*[[Primer for family, friends and care providers]]
*[[Primer for patients]]

== Learn more ==
'''Potential treatments and research'''
* [[Ampligen]] Used in [[Argentina]] for the treatment of [[Severe and very severe ME|severe ME/CFS]].
* [[Brain#Brain_imaging|Brain imaging]]
* [[Natural killer cell]]
* [[Vagus nerve infection hypothesis]]
'''Guides and reports'''
*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis] (2018) Guide for Caretakers
*"[[In the Expectation of Recovery]]" by the [[Citizen Network]] UK

'''[[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 symptoms were instead 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.
* 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>{{Cite web |url=http://drmyhill.co.uk/wiki/CFS_or_depression_-_what_are_the_differences | title = CFS or depression - what are the differences|website=Dr. Myhill | last = Myhill | first = Sarah | authorlink = Sarah Myhill|access-date=2021-11-10}}</ref>
'''Outbreaks'''
* [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]] outbreak of 1984 began the research that led to the diagnostic construct [[Fukuda criteria|Fukuda]] and name of [[chronic fatigue syndrome]]

* [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|List of outbreaks]]

== Other resources ==
*[[Verywell FMS/CFS]] Well written articles on ME/CFS and Fibromyalgia.

== References ==
{{Reflist}}

[[Category:Primers]]

Primer for patients

2024-08-08T14:01:23Z

Paul Götze:/* Notable studies */ Fix list item hierarchy (indentation)

{{mbox|text= Editors: Edits to this Primer may require the same edits to the other [[:Category:Primers|Primers]].}}
This '''Primer for patients''' will provide the information you need to better understand your personal diagnosis of [[chronic fatigue syndrome]] (CFS), [[myalgic encephalomyelitis]] (ME), or [[ME/CFS]], which can be very different with severity and symptoms from patient to patient.

<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="symptoms" /><ref name="guide">{{Cite web|url=http://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/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 patient can have many more symptoms<ref name="whatis" /> and meet different criteria. [[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="Algorithm">{{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 = | author-link =| date = 2015 | website = National Academies|archive-url=|archive-date=|access-date=}}</ref><ref name="guide" /> The [[Canadian Consensus Criteria]] (CCC) requires the core symptoms and [[Nervous system|neurological]], [[Autonomic nervous system|autonomic]], [[Neuroendocrine system|neuroendocrine]], [[immune system]], and [[myalgia]] 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 | 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="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 = M C | last = Sharpe | first2 = L C | last2 = Archard | first3 = J E | last3 = Banatvala | first4 = L K | last4 = Borysiewicz | first5 = A W | last5 = Clare | first6 = A | last6 = David | first7 = RH | last7 = Edwards | first8 = KE | last8 = Hawton | first9 = HP | last9 = Lambert}}</ref> are used for diagnosing [[chronic fatigue syndrome]] (CFS), they are both overly broad and there is criticism that patients are being [[misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome|misdiagnosed]] in both clinical and research settings as having [[Chronic fatigue syndrome|CFS]] when in fact they are suffering from the symptom [[chronic fatigue]] (CF).<ref name="ICC" /><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> 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="Inew2018">{{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="Inew2018" /><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="Times2012">{{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 adrenal fatilure are sometimes erroneously diagnosed with CFS.<ref name="ICC" /> CF is a symptom of many diseases, and illnesses, and should not be confused with the grossly misnamed disease CFS.

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

"The most common overlapping condition with ME/CFS is [[fibromyalgia]]."<ref name="ICC" /> 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 name="Natelson2019">{{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, in the past a mostly psychiatric approach has been taken with ME/CFS, but this is changing. At this time there are no approved drug treatments. Until 2021, [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) were used in the [[United Kingdom|UK]] for treating ME/CFS, which caused harm.<ref name="OxfordBrookesSurvey"/> 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|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 = 2018-11-08 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-22}}</ref> The CDC recognizes the hallmark symptom of PEM which is a [[post-exertional malaise|worsening of symptoms after physical, mental or emotional exertion]]<ref name="symptoms">{{Cite web|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html| title = Symptoms of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-22}}</ref> 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 | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-04-12}}</ref>

Take time when you are able to review this Primer. Because you are not well, this can be overwhelming at times, so only do what you are mentally and physically able.

[[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]]]]

== 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 | author-link5 = | 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, [[allergy|allergic reaction]], and [[stress]].<ref name="grandround">{{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> 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|immunization]].<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> 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="SEID-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: 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>[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 name="ICC" />

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="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 name="grandround" /> 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> [[Rosemary 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. | author-link = Rosemary Underhill | 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 |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.com|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 = Kaufman | first = David | 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="guide" /> 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| 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="SEID-IOM2015"/>{{Rp|181}} 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 - by David S. Bell, MD|website =[[Open Medicine Foundation]] | date = 2016-06-25|access-date=2018-08-11|language=en-US}}</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 | date = 2018-11-08 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-01-31}}</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="guide" /><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? – American ME and CFS 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="facts">{{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 = National Academies|archive-url=|archive-date=|access-date=}}</ref><ref name="SEID-IOM2015">{{Cite book | last = Institute of Medicine | authorlink = Institute of Medicine| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|location=Washington, DC|publisher=The National Academies Press | date = 2015 | url=https://www.ncbi.nlm.nih.gov/books/NBK284902/
|isbn=0309316898 | pmid = 25695122
|doi = 10.17226/19012 }}</ref>{{Rp|32}} 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 isconsidered 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>{{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>

== 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|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/index.html| title = Symptoms and Diagnosis of ME/CFS {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2019-01-18 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2019-02-01}}</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 [[post-exertional malaise|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]], [[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.<ref name="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 exertion]] 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; he won a disability benefit 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="whatis">{{Cite web|url=https://www.omf.ngo/what-is-mecfs/| title = What is ME/CFS? | last = | first = | date = |website=[[Open Medicine Foundation]]|archive-url=|archive-date=|access-date= | authorlink = |publisher=Open Medicine Foundation}}</ref><ref name="symptoms"/><ref name="Cairns2005" /> 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 name="Linderheimer2017">{{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="whatis" /><ref name="prognosis" /><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="Algorithm" /><ref name="guide" />
==== 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>{{Cite web|url=https://solvecfs.org/what-is-mecfs/| title = Get the Facts about ME/CFS|website=Solve ME/CFS Initiative|language=en-US|access-date=2019-09-10}}</ref>

=== Government guides on symptoms ===
'''US Government guides on symptoms'''
*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide] via The [[Institute of Medicine report]]
*[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]

== Tests to discuss with your doctor ==
* [[Natural killer cell]] (NKC) Blood Test

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

==Drugs and 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. There are many [[:Category:Potential_treatments|potential treatments]], though their evidence base is limited, as most research into treatments has gone into unsuccessful 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 enormous 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 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 [[United States|US]] [[compassionate use|Treatment Protocol/Expanded Access Program]], known as ''AMP-511'', to new ME/CFS 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''' allow treatments up to 100 ME/CFS patients at any one time to receive Ampligen infusions at [[Ampligen#Clinics|approved clinics]].<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> The most recent clinical trial of Ampligen was open to [[Long COVID]] patients with ME/CFS, and was published in 2020.<ref name="Strayer2020"/>

[[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 | authorlink3 = | last4 = Alme | first4 = Kine | author-link4 = | last5 = Rekeland | first5 = Ingrid Gurvin | author-link5 = | 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="monitor" /> For instance, tricyclic drugs can improve mood and help with sleep and pain. However, in some in can worsen [[orthostatic intolerance]].<ref name="monitor" /><ref name="Carruthers, 2003"/>

===Controversy===
[[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]]
Psychiatry has taken an [[Psychologization|inappropriate lead]] and treatment path for a biological disease. In the UK, [[graded exercise therapy|GET]] and [[cognitive behavioral therapy|CBT]] were employed by ME Clinics until late 2021. [[Exercise]] exacerbates symptoms and can further harm patients.<ref name="ng206">{{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><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><ref>[https://you.38degrees.org.uk/petitions/get-and-cbt-are-dangerous-treatments-for-me-patients GET and CBT are dangerous treatments for ME patients - Petition - 38 Degrees - By Michael Evison]</ref> [[Depression]] and [[anxiety]] drugs have been utilized usually with poor and even damaging results.<ref name="myhill" />

Treating a biological disease as a mental illness is not cost effective. The drugs are ineffective and [[biomedical research]] is not pursued. People struck down and disabled with ME/CFS are labeled with a mental health issue; disability insurance having clauses excluding a mental health illness/disease kick in stopping any payment or shortening the payout time-frame.<ref>[http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really? - By David Tuller Virology Blog]</ref><ref>[https://www.psychologytoday.com/blog/turning-straw-gold/201212/physical-illnesses-may-soon-be-labeled-mental-disorders Physical Illnesses May Soon Be Labeled “Mental Disorders” - Psychology Today - Toni Bernhard, J.D.]</ref><ref>[http://www.theguardian.com/society/2004/apr/28/equality.mentalhealth People with mental illness face widespread discrimination - The Guardian - David Batty]</ref><ref>[http://thoughtsaboutme.com/2016/03/21/keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability-benefits/ Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits - Thoughts About ME]</ref>

==== 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]].
Until recently, [[graded exercise therapy]] (GET) and [[Cognitive behavioral therapy]] (CBT) were employed in the UK and Ireland, and are still used in some parts of Europe through ME Clinics.<ref name="ng206">{{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 [[biopsychosocial model]] used in the [[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">{{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>

*[[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.
*[[Doctor Speedy]] was also seriously harmed by GET.

===Claims of curative treatments===
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 improve [[chronic fatigue]] (CF). ME/CFS patients experience an ongoing improper immune response and other [[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|medical 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 diagnosed with CFS that recovered in a relatively short period of time,<ref name="Inew2018" /><ref name="ABC2018" /><ref name="Times2012" /> may have had [[overtraining syndrome]],<ref name="spence" /> while some people with adrenal failure or other fatiguing illnesses are erroneously diagnosed with CFS.<ref name="ICC" />

=== 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 [[National Institutes of Health]] (NIH), the [[Centers for Disease Control and Prevention]] (CDC) reinstating and increasing funding and education based on [[Institute of Medicine report]] recommendations and the [[U.S. Department of Health and Human Services|Health and Human Services]] (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> #[[MEAction]] 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>[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - 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.

== Recommended viewing ==

==== Documentaries ====
'''Films'''
*[[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]]
*[[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]]

==== Short film ====

*[[The Last Great Medical Cover Up]] is a [https://vimeo.com/143904110 UK short Film on Vimeo] with several patient interviews. (2015)

==== News media ====
*[[Chronic Fatigue: Missing Millions (Carte Blanche DSTV)]] TV report, South Africa (2017)

==== Talks and interviews ====
*Jennifer Brea is interviewed for the upcoming BRIC Flix on her ME/CFS disease experience and her 2017 documentary film [[Canary in a Coal Mine]] (now titled [[Unrest]]) at [https://www.youtube.com/watch?v=zeIefNymFuw 5:30 and 10:20.] (2016)

== Recommended reading ==
====Government health organizations====
:'''US'''

:[[Centers for Disease Control]] (CDC)
:*[https://www.cdc.gov/me-cfs/me-cfs-children/factsheets.html ME/CFS in Children Fact Sheets] (2017) Fact Sheets for Healthcare Professionals, Parents/Guardians, Education Professionals

:[[National Institutes of Health]] (NIH)
:*[[Moving Toward Answers in ME/CFS - NIH Director's Blog (2017)]]

:[[Institute of Medicine]] (IOM)
:*[https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts] From the [[Institute of Medicine report]]. (2015)

:*[https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness] Report Brief on the Institute of Medicine report. (2015)

==== ME/CFS research foundations ====
:'''UK'''

:[[Invest in ME]]
:*[http://www.investinme.org/faqs.shtml Frequently Asked Questions]

:'''US'''

:[[Open Medicine Foundation]] (OMF)
:*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?]

==== ME/CFS organizations ====
:'''Australia'''

:[[Emerge Australia]]
:*[https://www.emerge.org.au/what-is-mecfs/ What is ME/CFS?]

:'''UK'''

:[[ME Association]]
:*[http://www.meassociation.org.uk/ ME Association]

:[[Tymes Trust]] (Children and young people)
:*[http://www.tymestrust.org/ Tymes Trust]
:*[http://www.tymestrust.org/pdfs/mecfsseid.pdf Pediatric ME, CFS, SEID for Families and their GPs] (2016)

:'''US'''
:[[Massachusetts CFIDS/ME & FM Association]]
:*[https://www.masscfids.org/ Massachusetts CFIDS/ME & FM Association]

:[[Solve ME/CFS]]
:*[https://solvecfs.org/ Solve ME/CFS Initiative]
:*[https://solvecfs.org/me-cfs-long-covid/about-the-disease/ What is ME/CFS?] - Solve ME/CFS Initiative (2017)

:*[http://solvecfs.org/what-is-mecfs/ Get the Facts about ME/CFS] (2016)

:*[https://drive.google.com/file/d/0B6UlcglLsyp7WkgxbmdaWXVhbVU/view What, Exactly, is a Biomarker Anyway? And Why Don't We Have One for ME/CFS?] (2017)

:*[http://solvecfs.org/wp-content/uploads/2013/06/SMCI_MECFS_FactSheet.pdf What is ME/CFS?] (2013)

:'''International'''
:[[MEAction]]
:*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis] (2018) Guide for Caretakers

:*[http://www.meaction.net/wp-content/uploads/2015/10/ME-Facts-v2-1.pdf Facts about Myalgic Encephalomyelitis (ME) (Also called chronic fatigue syndrome or CFS)] (2015)

:*[http://www.meaction.net/reports-and-fact-sheets/? Reports and Fact Sheets] (2015)

==== Other organizations ====
:[https://rarediseases.org/ National Organization for Rare Disorders] (NORD)
:*[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis]

==== Other reading====
:*[http://thirdage.com/what-do-you-do-when-a-loved-one-becomes-chronically-ill/ What Do You Do When a Loved One Becomes Chronically Ill?] By: Suzan Jackson

==History==
*[[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>

==Notable studies==
* 2020, Effect of disease duration in a randomized Phase III trial of rintatolimod, an immune modulator for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<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 | authorlink2 = | 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> - [https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0240403 (Full text)]
* 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=|url-status=|publisher=SolveCFS}}</ref> (TALK)

* 2016, [[Metabolic features of chronic fatigue syndrome]]
* 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)]
*2014, Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome<ref>{{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]]]]

*[[Cytokine#Notable_studies|Cytokine ("Notable studies")]]

*[[List of enterovirus infection studies]]]

== Connect with organizations and other persons with ME/CFS ==
*For information and support, you may want to review materials offered by a patient group in your area.

:See: [[:Category:Patient groups by country|Patient groups by country]]

*:[[Science for ME]], [[Phoenix Rising]], r/cfs [https://www.reddit.com/r/cfs/], and [[Health Rising]] are forums where you can ask questions, get support, and read about the latest research.

*There are many research initiatives around the world working on ME/CFS.

:See: [[:Category:Research initiatives by country|Research initiatives by country]]

*:[[Solve ME/CFS]] produces printed, online, and e-mail newsletters. Take their [http://solvecfs.org/do-i-have-mecfs-quiz/ Do I have ME/CFS? QUIZ]

== See also ==
*[[Primer for family, friends and care providers]]
*[[Medical neglect and abuse]]
*[[Severe and very severe ME]]
*[[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis|List of abnormal findings]]

==Learn more==
'''Key Facts'''
*[https://www.omf.ngo/what-is-mecfs/ What is ME/CFS - Symptoms, Diagnosis and Research] Open Medicine Foundation
*[https://solvecfs.org/me-cfs-long-covid/about-the-disease/ What is ME/CFS?] - Solve ME/CFS Initiative
*[https://www.nap.edu/resource/19012/MECFS_DiagnosticAlgorithm.jpg Diagnostic Algorithm]
*2019, [https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue A Town for People with Chronic Fatigue Syndrome] - New Yorker - about Ampligen
'''[[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 to make him swim and put on a scary theme park ride to scare him into moving.

*ME/CFS is not [[depression]]. It causes a lack of energy, not a lack 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 | last = Myhill |first =Sarah | authorlink = Sarah Myhill|website = DrMyhill|access-date = 2021-03-22}}</ref>

'''Outbreaks'''
* [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]] outbreak of 1984 began the research that led to the diagnostic construct [[Fukuda criteria|Fukuda]] and name of [[chronic fatigue syndrome]]

* [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks|List of outbreaks]]

===Other resources===
*[[Phoenix Rising]] Citizen Scientists debate the latest ME/CFS science.
*[[Science for ME]] Friendly forum on ME/CFS, FMS, and comorbid illnesses.
*[https://twitter.com/search?f=tweets&vertical=default&q=%23mecfs&src=tyah Twitter #mecfs] Connect with patients, caregivers, and ME/CFS organizations for support, articles, and research.

== References ==
{{Reflist}}

[[Category:Primers]]

Primer for journalists

2024-08-08T13:59:15Z

Paul Götze:/* Notable studies */ Fix list item hierarchy (indentation)

{{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]]

Primer for doctors and researchers

2024-08-08T13:55:16Z

Paul Götze:/* Notable studies */ Fix list item hierarchy (indentation layout)

{{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]]

Dan Neuffer

2024-08-08T11:54:19Z

Paul Götze:Fix typo, add ANS REWIRE page link, use a list layout for online presence items

'''Dan Neuffer''' is the author of ''[[CFS Unravelled|CFS Unravelled: Get Well By Treating The Cause Not Just The Symptoms Of CFS, Fibromyalgia, POTS And Related Syndromes]]''. After suffering from ME/CFS for roughly six years, Neuffer became interested in the role of the [[autonomic nervous system]] in the disease and devised a self-treatment plan accordingly. He reports that over next 12-18 months he made a full recovery and has not relapsed.<ref>{{Cite news |url =https://cfsunravelled.com/whydan/ | title = Author of CFS Unravelled that recovered from CFS|work=CFS Unravelled|access-date=2019-04-06|language=en-US}}</ref>

==ANS REWIRE==
Neuffer developed an online self-help program for recovery called [[ANS REWIRE]] to compliment recovery efforts of patients working with a range of health care providers.<ref>{{Cite news |url =https://ansrewire.com/about/ | title = Online recovery program for ME/CFS/Fibromyalgia|work=ANS REWIRE|access-date=2024-08-08|language=en-AU}}</ref>

== Books ==
* 2012, Discover Hope: 7 Steps To Discover Hope and Cope Better with Fibromyalgia & Chronic Fatigue Syndrome
* 2013, 2017 [[CFS Unravelled|CFS Unravelled: Get Well By Treating The Cause Not Just The Symptoms Of CFS, Fibromyalgia, POTS & Related Syndromes]], foreword by Professor Kati Thieme, PhD

== Online presence ==
* [https://cfsunravelled.com/ Website]
* [https://www.youtube.com/user/CFSUnravelled YouTube]
* [https://www.facebook.com/cfsunravelled/ Facebook]
* [https://www.instagram.com/danneuffer.cfsunravelled/ Instagram]

==See also==
* [[Brain training]]
* [[CFS Unravelled]]

==References==
{{reflist}}

{{stub}}

[[Category:Authors]]
[[Category:People with ME, CFS, and/or FMS]]

Dynamic Neural Retraining System

2024-08-08T11:38:19Z

Paul Götze:/* Components */ Fix link to Neurolinguistic programming

Annie Hopper created the '''Dynamic Neural Retraining System''' or '''DNRS''' in 2008, and states this is based on her recovery from "severe Multiple Chemical Sensitivity, Fibromyalgia and Electric Hypersensitivity Syndrome".<ref name="team">{{Cite web | url=https://retrainingthebrain.com/meet-the-dnrs-team/ | title = Meet the DNRS™ Team | last = Tozer | first = James|website=Dynamic Neural Retraining System|language=en-CA|access-date=2020-09-23}}</ref> Hopper is not a doctor or a scientist.<ref name="team" /><ref name="Tuller2Sep2020">{{Cite web | date = 2012-09-02| url = https://www.virology.ws/2020/09/02/trial-by-error-what-is-the-dynamic-neural-retraining-system/| title = Trial By Error: What Is the Dynamic Neural Retraining System?|website=[[Virology blog]] | last = Tuller | first =David | authorlink = David Tuller}}</ref>

==Theory ==
DNRS's website states that [[trauma]] is the cause of brain changes, and that trauma causes a "maladaptive stress response" which then causes certain physical symptoms, which the website lists.<ref name="about" /> However, the symptoms listed have many possible causes and DNRS is not an approved trauma recovery program.<ref name="about">{{Cite web | url=https://retrainingthebrain.com/how-the-program-works/ | title = How The Program Works | last = Tozer | first = James | authorlink = | date = | website = Dynamic Neural Retraining System|language=en-CA| archive-url = | archive-date = |url-status = | access-date=2020-09-23}}</ref> Various scientific claims on the website about the long term effects of trauma and about how the program physically alters the brain do not have scientific references, including the claim that the program will help you create "new, healthy neural pathways".<ref name="about" />

==Components ==
The program is a psychologically based self-help approach that states it involves
*[[cognitive behavioral therapy]]
*[[mindfulness]] based cognitive restructuring
*emotional restructuring therapy
*[[Neurolinguistic programming]] (NLP)
*incremental training (a form of neural shaping)
*behaviour modification therapy
*cognitive-behaviour therapy<ref name="about" />

The program states it takes 14hrs to complete the training, with 4 days suggested for this, followed by regular practice. It can be done online or by DVD. You are expected to commit to 6 months of practice, at a minimum of one hour per day.<ref name="about" />

==ME/CFS ==
The DNRS website claims it can "rewire chronic illness disease patterns in the brain" and that "the program is an effective treatment for [[Multiple chemical sensitivity|chemical sensitivities]], [[chronic fatigue syndrome]], [[fibromyalgia]] and many other chronic illnesses". No brain scans or brain imaging studies support this "rewiring the brain" claim, no other evidence is given to support this claim, and there is no evidence that brain-only dysfunction is the sole cause of any of these illnesses.<ref name="about" /> DNRS does not suggest any benefits that could lead to improvement in [[Mitochondrion|mitochondria]] or [[immune system]] functioning, or any change in [[dorsal root ganglia]] inflammation,<ref name="about" /> all of which research has found to be involved in ME/CFS. Peripheral nerve changes, the [[autonomic nervous system]] changes, and POTS are not mentioned.<ref name="about" /> The only scientific support is not published in full and not peer-reviewed, and appears as a graph and basic summary of some aspects of a preliminary report based on questionnaires from a group who tried DNRS. Only some results are reported, and it shows a high drop-out rate, and unsurprisingly shows that those who did not drop-out did improve to a degree.<ref name="Guenter2019" /> There is no information about whether participants had been professionally diagnosed, the results of the patients self-reporting CFS are not given, and full results are not reported, which is an indicator of [[research bias in ME/CFS|bias]].

ME/CFS is a neurological disease which is also multisystemic; symptoms include immune system dysfunction including altered [[cytokine]] expression, digestive / gastrointestinal symptoms that in some cases become severe enough to need tube feeding or even cause death from [[Sophia Mirza|kidney failure]], [[mitochondria dysfunction]], hormonal changes caused by the endocrine system, multiple types of pain, new intolerances to certain foods or sensory intolerances, alterations in the shape of [[erythrocyte|red blood cells]], changes in the circulatory system for example [[postural orthostatic tachycardia syndrome]] (POTS), and significant [[cognitive dysfunction]].<ref name="ICC2011primer" />

The theory of ME/CFS as a long-term consequence of [[trauma]] lacks evidence and has significant evidence against it, with many patients having no trauma history and most reporting that the onset if the disease was linked to a [[viral onset hypothesis|virus]], other [[infection]], or physical injury.<ref name="ICC2011primer" /> A study of military veterans by Murphy et al. (2003) could not find a link between [[Post-traumatic stress disorder]] and CFS-like symptoms.<ref name="veterans2003">{{Cite journal | last = Murphy | first = Frances M. | authorlink = Frances Murphy | last2 = Lee | first2 = Kyung Y. | authorlink2 = Kyung Lee | last3 = Mahan | first3 = Clare M. | author-link3 = Clare Mahan | last4 = Natelson | first4 = Benjamin H. | author-link4 = Benjamin Natelson | last5 = Kang | first5 = Han K. | author-link5 = Han Kang | date = 2003-01-15 | title = Post-Traumatic Stress Disorder and Chronic Fatigue Syndrome-like Illness among Gulf War Veterans: A Population-based Survey of 30,000 Veterans |url =https://academic.oup.com/aje/article/157/2/141/90101|journal=American Journal of Epidemiology|language=en|volume=157|issue=2 | pages = 141–148|doi=10.1093/aje/kwf187|issn=0002-9262|quote=|via=}}</ref> Heins et al. (2011) found no relationship between childhood maltreatment and response to [[Cognitive behavioral therapy|CBT]] therapy for CFS.<ref name="Heins2011">{{Cite journal | last = Heins | first = Marianne J. | authorlink = Marianne Heins | last2 = Knoop | first2 = Hans | authorlink2 = Hans Knoop | last3 = Lobbestael | first3 = Jill | authorlink3 = Jill Lobbestael | last4 = Bleijenberg | first4 = Gijs | authorlink4 = Gijs Bleijenberg | authorlink5 = | date = Dec 2011 | title = Childhood maltreatment and the response to cognitive behavior therapy for chronic fatigue syndrome | url =https://www.ncbi.nlm.nih.gov/m/pubmed/22118383/|journal=Journal of Psychosomatic Research|volume=71|issue=6 | pages = 404–410|doi=10.1016/j.jpsychores.2011.05.005|issn=1879-1360|pmid=22118383|quote=|via=}}</ref><ref name="Clark, 2018">{{Citation | last = Clark | first1 = James E. | author-link1 = James Clark | last2 =Davidson | first2 = Sean L. | authorlink2 = Sean Davidson | last3 = Maclachlan | first3 = Laura| authorlink3 = Laura Maclachlan | last4 = Newton | first4 = Julia| authorlink4 = Julia Newton | last5 = Watson | first5 = Stuart | authorlink5 = Stuart Watson | title = Rethinking childhood adversity in chronic fatigue syndrome | journal = Fatigue: Biomedicine, Health & Behavior | volume = | issue = | page = | date = 2017 | pmid = | doi = 10.1080/21641846.2018.1384095 }}</ref><ref name="Morris2019">{{Cite journal | last = Morris | first = Gerwyn | authorlink = Gerwyn Morris | last2 = Berk | first2 = Michael | authorlink2 = Michael Berk | last3 = Maes | first3 = Michael | authorlink3 = Michael Maes | last4 = Carvalho | first4 = André F. | author-link4 = André Carvalho | last5 = Puri | first5 = Basant K. | author-link5 = Basant Puri | date = 2019-01-26 | title = Socioeconomic Deprivation, Adverse Childhood Experiences and Medical Disorders in Adulthood: Mechanisms and Associations |url =https://doi.org/10.1007/s12035-019-1498-1|journal=Molecular Neurobiology|language=en|volume=|issue= | pages = 1-25|doi=10.1007/s12035-019-1498-1|issn=1559-1182|quote=|via=}}</ref>
{{See also|Trauma}}

==Risks and safety ==
There is no scientific evidence that DNRS has positive benefits or that it is a safe treatment, no clinical trials have been conducted, and DNRS was not developed by a medical professional or scientist.<ref name="about" /><ref name="Guenter2019" />

The hallmark symptom of ME/CFS is [[post-exertional malaise]] which can be triggered by too much cognitive effort; in [[severe and very severe ME]] watching too much TV or listening to audio may cause post-exertional malaise or permanent deterioration, which may mean the commitment and work needed by DNRS is both impossible and very harmful.<ref name="ICC2011primer">{{citation | last1 = Carruthers | first1 = BM | author-link1 = 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 | author-link6 = Terry Mitchell | last7 = Staines | first7 = D | author-link8 = Donald Staines | last8 = Powles | first8 = ACP | author-link8 = A C Peter Powles | last9 = Speight | first9 = N | author-link9 = Nigel Speight | last10 = Vallings | first10 = R | author-link10 = Rosamund Vallings | last11 = Bateman | first11 = L | author-link11 = Lucinda Bateman | last12 = Bell | first12 = DS | author-link12 = David Bell | last13 = Carlo-Stella | first13 = N | author-link13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | author-link14 = John Chia | last15 = Darragh | first15 = A | author-link15 = Austin Darragh | last16 = Gerken | first16 = A | author-link16 = Anne Gerken | last17 = Jo | first17 = D | author-link17 = Daehyun Jo | last18 = Lewis | first18 = DP | author-link18 = Donald Lewis | last19 = Light | first19 = AR | author-link19 = 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>

Some components of the program such as [[cognitive behavioral therapy]], mindfulness and stress management techniques have not been shown to be effective in the majority of ME/CFS, and some have resulted in substantial rates of harm. If used as a trauma recovery or stress management program, it is not known how this compares with well-established, proven treatments.

==Evidence ==
No clinical trials have been conducted to show the effectiveness or potential risks of DNRS, and there is no evidence that the brain is "rewired" or "retrained" or that neural networks within the brain are altered by the treatment.<ref name="about" />

Evidence consists of an unpublished presentation, which has not been peer reviewed, part of which can be found on the DNRS website, and a number of claims by coaches or facilitators who stated they recovered from multiple illnesses using it.<ref name="ResearchSep2020">{{Cite web | url=https://retrainingthebrain.com/research-3/ | title = Research | last = Tozer | first = James | authorlink = | date = n.d.|website=Dynamic Neural Retraining System|language=en-CA| archive-url = | archive-date = |url-status = | access-date=2020-09-23}}</ref> According to the presentation, brain imaging or brain function tests were not used to assess neuroplasticity after the DNRS course, and all results were based on patient questionnaires.<ref name="Guenter2019">{{Citation|vauthors=Guenter et al | first = | title = Neuroplasticity-based treatment for fibromyalgia, chronic fatigue and multiple chemical sensitivity: feasibility and outcomes| publisher = | date = 2019 | url=|volume=|issue=| pages=|chapter=|edition= | last2 = | first2 = }}</ref>

The presentation on the website does not provide results separately for patients with ME/CFS, although some patients reported having it.<ref name="Guenter2019" />

==Learn more ==
*[https://www.virology.ws/2020/09/02/trial-by-error-what-is-the-dynamic-neural-retraining-system/ Trial By Error: What Is the Dynamic Neural Retraining System?] - [[Virology blog]]
*[https://paradigmchange.me/wp/retraining/ Some Comments on So-Called “Brain Retraining” Programs] - Psychologist Lisa Petrison comments on the unproven scientific claims and potential harm - Paradigmchange.me
*[https://retrainingthebrain.com/how-the-program-works/ How the program works - DNRS]

==See also ==
*[[Brain training]]

==References ==
{{Reflist}}

[[Category:Brain training]]
[[Category:Potential treatments]]
[[Category:Psychological and behavioral therapies]]

Category:Brain training

2024-08-08T11:36:52Z

Paul Götze:/* See also */ Fix page link to Neurolinguistic programming

This category contains articles about Brain training.

{{Main article|Brain retraining}}

==Please create these pages==
''You can add page requests here. Remove any blue links that have already been created.''
<div style="column-count:1">
*[[Limbic retraining]]
</div>

==See also==
*[[Amygdala hypothesis]]
*[[Neurolinguistic programming]] (NLP)

==Please expand these stub pages==
{{StubPagesInCategory|{{PAGENAME}}|mode=inline}}

[[Category:Potential treatments]]
[[Category:Psychological paradigm]]
[[Category:Mind body treatments]]

Category:Mind body treatments

2024-08-08T11:34:18Z

Paul Götze:Move existing ANS REWIRE page link to See also section

This category contains articles about mind-body approaches to treating or curing [[ME/CFS]].

Mind-body approaches are typically used as a '''complementary or alternative therapy''' to improve quality of life or particular symptoms in a variety of chronic illnesses. They typical involve self-help approaches, attending workshops, online training, or DVD-based training and usually do not need specialist equipment.

Some mind-body approaches have been falsely advertised as a cure or sole treatment for patients with [[chronic fatigue syndrome]], [[fibromyalgia]], [[multiple chemical sensitivity]], [[irritable bowel syndrome]] or a variety of other poorly understood medical conditions.

==Please create these pages==
''You can add page requests here. Remove any blue links that have already been created.''
<div style="column-count:2;">
*[[Limbic retraining]]
*[[Mickel Therapy]] -see [https://www.actionforme.org.uk/get-information/managing-your-symptoms/complementary-and-alternative-approaches/ AfME]
*[[Mind-Body Reset]] (see ASA ruling)
*[[Reverse Therapy]] see [https://www.actionforme.org.uk/get-information/managing-your-symptoms/complementary-and-alternative-approaches/ AfME]
</div>

==See also==
*[[Amygdala hypothesis]]
*[[Neurolinguistic programming]] (NLP)
*[[ANS REWIRE]]

==Please expand these stub pages==
{{StubPagesInCategory|{{PAGENAME}}|mode=inline}}

[[Category:Potential treatments]]
[[Category:Psychological paradigm]]

Brain retraining

2024-08-08T11:27:23Z

Paul Götze:Add more details about example interventions during brain retraining

'''Brain training''' or '''brain re-training''' is a proposed treatment approach advanced by a group of former patients and researchers who believe that [[ME/CFS]]--due to its complexity, the multiplicity of symptoms involved and systems affected, and the diverse ways that some people eventually recover while others do not--that the illness is a result of the dysfunction of the autonomic [[nervous system]]. The autonomic nervous system (ANS) is associated with the [[Gastrointestinal system|digestive]], [[Endocrine system|endocrine]], [[Circulatory system|circulatory]] and other systems that tend to be involved with ME/CFS.

This is not to imply that symptoms are imagined by patients, but that the nervous system is at the heart of the diverse manifestations of symptoms that show up physically. There are several voices in the brain training movement, such as [[Ashok Gupta]]<ref>{{Cite web | url = https://www.guptaprogram.com | title = The Gupta Program | website = guptaprogram.com|language=en-US | access-date = 2019-04-06 | date = | last = | first = | author-link = |archive-url=|archive-date=|url-status=}}</ref>, [[Dan Neuffer]],<ref>{{Cite news |url =https://cfsunravelled.com/whydan/ | title = Author of CFS Unravelled that recovered from CFS|work=CFS Unravelled | access-date = 2019-04-06|language=en-US}}</ref>, and [[Ben Ahrens]]<ref>{{Cite web | url = https://www.re-origin.com/ | title = re-origin | website = re-origin.com | language=en-US | access-date = 2024-08-08}}</ref> that believe that the disease begins and perpetuates itself through a series of complex reactions involving the [[Amygdala hypothesis|amygdala]] and other parts of the brain, where the brain and nervous system become sensitized to certain triggers resulting in a variety of symptoms, which themselves become triggers for symptoms, resulting in a self-reinforcing feedback loop.<ref>{{Cite journal | last = Gupta | first = Ashok | author-link = | date = 2002 | title = Unconscious amygdalar fear conditioning in a subset ofchronic fatigue syndrome patients |url =https://www.guptaprogram.com/wp-content/uploads/2019/02/cfs-hypothesis-medical-hypotheses-article.pdf | journal=Medical Hypotheses | volume = 59 | issue = 6 | pages = 727–735|quote=|via=}}</ref> Brain training proposes that the way beyond this ANS dysfunction involves rewiring the nervous system through simple interventions, like breathing exercises, interrupting thought patterns, and gaining new perspectives on physical or emotional responses, that assist the patient in lowering their ANS arousal while also deliberately freeing up their attention to other sensations other than their symptoms.

To date there is very limited empirical research on brain training and ME/CFS. There is research on similar interventions for other conditions, such as [[Post-traumatic stress disorder|PTSD]],<ref>{{Cite journal | last = Ginsberg | first = Jay P. | last2 = Berry | first2 = Melanie E. | last3 = Powell | first3 = Donald A. | date = Jul 2010 | title = Cardiac coherence and posttraumatic stress disorder in combat veterans |url =https://www.ncbi.nlm.nih.gov/pubmed/20653296 | journal = Alternative Therapies in Health and Medicine | volume = 16 | issue = 4 | pages = 52–60|issn=1078-6791|pmid=20653296}}</ref> and researchers have measured [[heart rate variability]] (HRV, one indicator of autonomic function) in ME/CFS,<ref>{{Cite journal | last = Meeus | first = Mira | author-link = Mira Meeus | last2 = Goubert | first2 = Dorien | last3 = De Backer | first3 = Fien | last4 = Struyf | first4 = Filip | last5 = Hermans | first5 = Linda | last6 = Coppieters | first6 = Iris | last7 = De Wandele | first7 = Inge | last8 = Da Silva | first8 = Hellen | last9 = Calders | first9 = Patrick | date = Oct 2013 | title = Heart rate variability in patients with fibromyalgia and patients with chronic fatigue syndrome: A systematic review | url =http://linkinghub.elsevier.com/retrieve/pii/S0049017213000516 | journal = Seminars in Arthritis and Rheumatism | volume = 43 | issue = 2 | pages = 279–287|doi=10.1016/j.semarthrit.2013.03.004|issn=0049-0172|via=|quote= | author-link2 = Dorien Goubert | author-link3 = Fien De Backer | author-link4 = Filip Struyf | author-link5 = Linda Hermans | author-link6 = Iris Coppieters | author-link8 = Inge De Wandele | author-link8 = Helen De Silva | author-link9 = Patrick Calders}}</ref><ref name="Malfliet, 2018">{{Citation | last1 = Malfliet | first1 = Anneleen | author-link1 = Anneleen Malfliet | last2 = Pas | first2 = Roselien | author-link2 = Roselien Pas | last3 = Brouns | first3 = Raf | author-link3 = Raf Brouns | last4 = De Win | first4 = Joris | author-link4 = Joris De Win | last5 = Hatem | first5 = Samar M. | author-link5 = Samar M. Hatem | last6 = Meeus | first6 = Mira| author-link6 = Mira Meeus | last7 = Ickmans | first7 = Kelly | author-link8 = Kelly Ickmans | last8 = van Hooff | first8 = Robbert-Jan | author-link8 = Robbert-Jan van Hooff | last9 = Nijs | first9 = Jo | author-link9 = Jo Nijs | title = Cerebral Blood Flow and Heart Rate Variability in Chronic Fatigue Syndrome: A Randomized Cross-Over Study | journal = Pain Physician | volume = 21 | issue = 1 | page = E13-E24 | date = 2018 | url = http://www.painphysicianjournal.com/current/pdf?article=NTAwOA%3D%3D&journal=109 | doi = }}</ref> but published research on the effects on ME/CFS symptoms of interventions like the ones brain training proposes is limited to a clinical audit Gupta conducted of the effect of his [[amygdala retraining]] techniques for 33 of his patients.<ref name=":0">{{Cite journal | last = Gupta | first = Ashok | author-link = | date = September 2010 | title = Can amygdala retraining techniques improve the wellbeing of patients with chronic fatigue syndrome | url =https://www.guptaprogram.com/wp-content/uploads/2019/02/amygdala-retraining-jhh-sept-2010.pdf | journal=Journal of holistic healthcare | volume = 7 | issue = 2 | pages = 12-15|quote=|via=}}</ref> He found that over the course of a year, 93% of the 27 who completed the program reported their functioning improved, with 67% reporting significant improvement (regaining at least 80% of their pre-illness functioning). However this study included no randomization, control group, controlling for other treatments, or blinding to prevent [[Researcher bias|researcher]] and [[sample bias]].<ref name=":0" />

[[Category:Potential treatments]]

== Learn more ==
* André, Christophe. "[https://www.scientificamerican.com/article/proper-breathing-brings-better-health/ Proper Breathing Brings Better Health]" ''[[Scientific American]]'', January 15, 2019
* McCraty, Rollin and Maria A. Zayas. "[https://www.frontiersin.org/articles/10.3389/fpsyg.2014.01090/full Cardiac coherence, self-regulation, autonomic stability, and psychosocial well-being]" [[Frontiers in Psychology|''Frontiers'' ''in Psychology'']], September 29, 2014
* [[William Tiller|Tiller, William]] (Stanford University), et al. "[http://tir-training.de/wp-content/uploads/2015/09/HeartMath_Cardiac_Coherence.pdf Cardiac Coherence: A New Non-Invasive Measure of Autonomic Nervous System Order]" ''[[Alternative Therapies]]'', January 1996

== See also ==
* [[Biopsychosocial model]]

== References ==
{{Reflist}}

[[Category:Brain training]]
[[Category:Psychological and behavioral therapies]]
[[Category:Mind body treatments]]

Brain retraining

2024-08-08T11:17:24Z

Paul Götze:Add Ben Ahrens as "voice in the brian retraining movement" (re-origin program)

'''Brain training''' or '''brain re-training''' is a proposed treatment approach advanced by a group of former patients and researchers who believe that [[ME/CFS]]--due to its complexity, the multiplicity of symptoms involved and systems affected, and the diverse ways that some people eventually recover while others do not--that the illness is a result of the dysfunction of the autonomic [[nervous system]]. The autonomic nervous system (ANS) is associated with the [[Gastrointestinal system|digestive]], [[Endocrine system|endocrine]], [[Circulatory system|circulatory]] and other systems that tend to be involved with ME/CFS.

This is not to imply that symptoms are imagined by patients, but that the nervous system is at the heart of the diverse manifestations of symptoms that show up physically. There are several voices in the brain training movement, such as [[Ashok Gupta]]<ref>{{Cite web | url = https://www.guptaprogram.com | title = The Gupta Program | website = guptaprogram.com|language=en-US | access-date = 2019-04-06 | date = | last = | first = | author-link = |archive-url=|archive-date=|url-status=}}</ref>, [[Dan Neuffer]],<ref>{{Cite news |url =https://cfsunravelled.com/whydan/ | title = Author of CFS Unravelled that recovered from CFS|work=CFS Unravelled | access-date = 2019-04-06|language=en-US}}</ref>, and [[Ben Ahrens]]<ref>{{Cite web | url = https://www.re-origin.com/ | title = re-origin | website = re-origin.com | language=en-US | access-date = 2024-08-08}}</ref> that believe that the disease begins and perpetuates itself through a series of complex reactions involving the [[Amygdala hypothesis|amygdala]] and other parts of the brain, where the brain and nervous system become sensitized to certain triggers resulting in a variety of symptoms, which themselves become triggers for symptoms, resulting in a self-reinforcing feedback loop.<ref>{{Cite journal | last = Gupta | first = Ashok | author-link = | date = 2002 | title = Unconscious amygdalar fear conditioning in a subset ofchronic fatigue syndrome patients |url =https://www.guptaprogram.com/wp-content/uploads/2019/02/cfs-hypothesis-medical-hypotheses-article.pdf | journal=Medical Hypotheses | volume = 59 | issue = 6 | pages = 727–735|quote=|via=}}</ref> Brain training proposes that the way beyond this ANS dysfunction involves rewiring the nervous system through simple interventions, like breathing exercises, that assist the patient in lowering their ANS arousal while also deliberately freeing up their attention to other sensations other than their symptoms.

To date there is very limited empirical research on brain training and ME/CFS. There is research on similar interventions for other conditions, such as [[Post-traumatic stress disorder|PTSD]],<ref>{{Cite journal | last = Ginsberg | first = Jay P. | last2 = Berry | first2 = Melanie E. | last3 = Powell | first3 = Donald A. | date = Jul 2010 | title = Cardiac coherence and posttraumatic stress disorder in combat veterans |url =https://www.ncbi.nlm.nih.gov/pubmed/20653296 | journal = Alternative Therapies in Health and Medicine | volume = 16 | issue = 4 | pages = 52–60|issn=1078-6791|pmid=20653296}}</ref> and researchers have measured [[heart rate variability]] (HRV, one indicator of autonomic function) in ME/CFS,<ref>{{Cite journal | last = Meeus | first = Mira | author-link = Mira Meeus | last2 = Goubert | first2 = Dorien | last3 = De Backer | first3 = Fien | last4 = Struyf | first4 = Filip | last5 = Hermans | first5 = Linda | last6 = Coppieters | first6 = Iris | last7 = De Wandele | first7 = Inge | last8 = Da Silva | first8 = Hellen | last9 = Calders | first9 = Patrick | date = Oct 2013 | title = Heart rate variability in patients with fibromyalgia and patients with chronic fatigue syndrome: A systematic review | url =http://linkinghub.elsevier.com/retrieve/pii/S0049017213000516 | journal = Seminars in Arthritis and Rheumatism | volume = 43 | issue = 2 | pages = 279–287|doi=10.1016/j.semarthrit.2013.03.004|issn=0049-0172|via=|quote= | author-link2 = Dorien Goubert | author-link3 = Fien De Backer | author-link4 = Filip Struyf | author-link5 = Linda Hermans | author-link6 = Iris Coppieters | author-link8 = Inge De Wandele | author-link8 = Helen De Silva | author-link9 = Patrick Calders}}</ref><ref name="Malfliet, 2018">{{Citation | last1 = Malfliet | first1 = Anneleen | author-link1 = Anneleen Malfliet | last2 = Pas | first2 = Roselien | author-link2 = Roselien Pas | last3 = Brouns | first3 = Raf | author-link3 = Raf Brouns | last4 = De Win | first4 = Joris | author-link4 = Joris De Win | last5 = Hatem | first5 = Samar M. | author-link5 = Samar M. Hatem | last6 = Meeus | first6 = Mira| author-link6 = Mira Meeus | last7 = Ickmans | first7 = Kelly | author-link8 = Kelly Ickmans | last8 = van Hooff | first8 = Robbert-Jan | author-link8 = Robbert-Jan van Hooff | last9 = Nijs | first9 = Jo | author-link9 = Jo Nijs | title = Cerebral Blood Flow and Heart Rate Variability in Chronic Fatigue Syndrome: A Randomized Cross-Over Study | journal = Pain Physician | volume = 21 | issue = 1 | page = E13-E24 | date = 2018 | url = http://www.painphysicianjournal.com/current/pdf?article=NTAwOA%3D%3D&journal=109 | doi = }}</ref> but published research on the effects on ME/CFS symptoms of interventions like the ones brain training proposes is limited to a clinical audit Gupta conducted of the effect of his [[amygdala retraining]] techniques for 33 of his patients.<ref name=":0">{{Cite journal | last = Gupta | first = Ashok | author-link = | date = September 2010 | title = Can amygdala retraining techniques improve the wellbeing of patients with chronic fatigue syndrome | url =https://www.guptaprogram.com/wp-content/uploads/2019/02/amygdala-retraining-jhh-sept-2010.pdf | journal=Journal of holistic healthcare | volume = 7 | issue = 2 | pages = 12-15|quote=|via=}}</ref> He found that over the course of a year, 93% of the 27 who completed the program reported their functioning improved, with 67% reporting significant improvement (regaining at least 80% of their pre-illness functioning). However this study included no randomization, control group, controlling for other treatments, or blinding to prevent [[Researcher bias|researcher]] and [[sample bias]].<ref name=":0" />

[[Category:Potential treatments]]

== Learn more ==
* André, Christophe. "[https://www.scientificamerican.com/article/proper-breathing-brings-better-health/ Proper Breathing Brings Better Health]" ''[[Scientific American]]'', January 15, 2019
* McCraty, Rollin and Maria A. Zayas. "[https://www.frontiersin.org/articles/10.3389/fpsyg.2014.01090/full Cardiac coherence, self-regulation, autonomic stability, and psychosocial well-being]" [[Frontiers in Psychology|''Frontiers'' ''in Psychology'']], September 29, 2014
* [[William Tiller|Tiller, William]] (Stanford University), et al. "[http://tir-training.de/wp-content/uploads/2015/09/HeartMath_Cardiac_Coherence.pdf Cardiac Coherence: A New Non-Invasive Measure of Autonomic Nervous System Order]" ''[[Alternative Therapies]]'', January 1996

== See also ==
* [[Biopsychosocial model]]

== References ==
{{Reflist}}

[[Category:Brain training]]
[[Category:Psychological and behavioral therapies]]
[[Category:Mind body treatments]]

Category:Brain training

2024-08-08T10:50:51Z

Paul Götze:Remove (typo) ANS rewire, because the page already exists

This category contains articles about Brain training.

{{Main article|Brain retraining}}

==Please create these pages==
''You can add page requests here. Remove any blue links that have already been created.''
<div style="column-count:1">
*[[Limbic retraining]]
</div>

==See also==
*[[Amygdala hypothesis]]
*[[Neuro-linguistic programming]] (NLP)

==Please expand these stub pages==
{{StubPagesInCategory|{{PAGENAME}}|mode=inline}}

[[Category:Potential treatments]]
[[Category:Psychological paradigm]]
[[Category:Mind body treatments]]