MEpedia - User contributions [en]

Aseptic meningitis

2018-08-31T02:47:58Z

Jeshyr:Added citation for 85% figure

'''Aseptic meningitis''' is the [[inflammation]] of the [[meninges]], a membrane covering the brain and spinal cord, in the absence of a positive test on a routine bacterial culture of the patient's cerebral spinal fluid. The most common cause of aseptic meningitis is non[[polio]] [[Enterovirus|enteroviruses]].<ref>Connolly KJ, Hammer SM. (1990). The acute aseptic meningitis syndrome. Infect Dis Clin North Am. 1990 Dec;4(4):599-622.</ref> Other causes include infectious and non-infectious agents such as mycobacteria, fungi, spirochetes, parameningeal infections, medications, and malignancies.<ref name="Tunkel2016">{{cite web|last1=Tunkel|first1=Allan R.|title=Aseptic meningitis in adults|url=https://www.uptodate.com/contents/aseptic-meningitis-in-adults|website=UpToDate|publisher=Wolters Kluwer Health|accessdate=20 April 2018}}</ref>

The most common cause of aseptic [[meningitis]] is [[Enterovirus|enteroviruses]], which are responsible for more than 85% of viral cases<ref>{{Cite journal|date=2018-07-17|title=Viral Meningitis: Background, Pathophysiology, Etiology|url=https://emedicine.medscape.com/article/1168529-overview}}</ref>)

== See also ==

* [[Meningitis]]
* [[Intracranial hypertension]]

== References ==
<references />

[[Category:Disease]]

Karina Hansen

2018-07-07T11:20:30Z

Jeshyr:Added Return Home section documenting 2016/17 updates.

[[File:Karinahansen.png|right|200px]]
'''Karina Hansen''' is a young Danish woman who was forcibly removed from her home to a Hammel Neurocenter in Denmark on February 12, 2013 because of her [[myalgic encephalomyelitis]] illness.<ref name="MEGlobChron20151025KH" /><ref name="VoicefrShadow20130509" />

A petition demanding her release attracted nearly 3,000 signatures.<ref name="ChangeOrgKH" />

In 2015 a letter was signed by patients and sent to the Danish Prime Minister demanding her release.<ref name="LetrDanishPM2015" />

In Oct 2016, the Hansen family announced that Karina was now back home with her family.<ref>http://let-me.be/download.php?view.36</ref><ref>http://let-me.be/news.php?item.22.1</ref>

==Background==

Karina Hansen became ill as a teenager.

In 2008 while Karina Hansen was admitted to an arthritis hospital in Gråsten, she was tentatively diagnosed with [[myalgic encephalomyelitis]]. Her parents were not informed of this diagnosis at this time [Citation needed]. Her treatment at this hospital likely involved [[graded exercise therapy]] (GET) which can be dangerous and worsen symptoms of ME<ref name="Twisk2008" /><ref name="MEAssUK201505" />, as GET is part of the standard treatment in Denmark.<ref name="EliotSmith20160404" />

In 2009, the Danish Board of Health re-named ME 'Bodily Distress Syndrome' and re-classified it as a somatoform disorder. Two specialist clinics were designated to research BDS and treat patients.<ref name="EliotSmith20160404" />

In 2009 Karina's parents were informed that Karina could suffer from ME which was confirmed by Chief Physician Valerius from Hvidovre Hospital. In May of 2010, Karina Hansen was again pressured into hospitalization despite her previous experience of worsening with a hospital stay. Her sensitivities to light and sound were not taken into account. Severe ME poses many difficulties to a traditional hospital environment. During this stay, doctors considered the possibility of detaining Karina Hansen under the Mental Health Act but they were unable to as (according to the Medical Officer, Børge Sommer) Karina was "not considered depressive or psychotic." Karina chose to leave the hospital after three days. At this time, she determined to never be hospitalized again based on these detrimental experiences. In 2010, eleven days after this hospitalization, Dr. Henry Isager (a Danish expert in ME) examined Miss Hansen and also diagnosed her with ME.

In 2011, Norwegian physician and ME expert Mette Sophie Johnsgaard examined Karina and agreed she has severe ME<ref name="JustforKarina20140728" /><ref name="Crowhurst2015" />. Karina Hansen has a well-established diagnosis of ME. She and her parents also had advice and treatment suggestions by ME experts that they chose to follow. Karina had had sufficiently negative experiences for her to choose not to undergo hospitalization or treatments such as GET again. In May of 2011, public health officers visited Karina and determined she gave informed consent for alternative or complementary therapy. She was deemed competent to choose her own treatment. The following was reported based on this visit (taken from Skjoldan's letter):

<blockquote>"Karina appears clear, alert and oriented. She seems immediately mentally inconspicuous. She is considered to be well informed about her situation and she agrees with the "alternative" or "complementary" way to cope with the illness. She's crying when she informs us that she would very much like to participate in rehabilitation, but that she cannot manage anything because of extreme fatigue, extreme fatigability and activity-induced pain. She hopes that maximum relief in the long term will allow for spontaneous improvement of the disease. She has thus given informed consent to the omission of conventional medical treatment in, favor of an "alternative" or "complementary" medical treatment."<ref name="JustforKarina20140728" /></blockquote>

With the diagnosis of ME and Karina's mental competency confirmed multiple times, Karina and her family felt secure that they had taken all the necessary steps to keep Karina safe.

==Institutionalization==

An attempt was made to remove Karina from her home in 2012; after this incident, she arranged for her parents to have power of attorney, in case she was declared unfit.<ref name="EliotSmith20160404" />

On February 12, 2013, Karina Hansen was removed from her home and taken to [[Hammel Neurocenter]]<ref name="MEGlobChron20151025KH" /><ref name="VoicefrShadow20130509" /> She was 24 years old. Only months later her sister, a nurse, visited Karina and found her condition had deteriorated to the point that she could no longer speak.<ref name="EliotSmith20160404" />

In October of 2014, Karina was moved to a nearby rehabilitation center for brain injury<ref name="EkstraBladet20150227" />, where she was allowed limited contact with her family. Though she was physically clean and cared-for, she was in a wheelchair and unable to speak clearly. She did not recognize her father at all when he visited her in December of 2015.

Although Karina was already very ill when she was taken from her home, at that time she was still able to stand up occasionally and clearly communicate with others. Her current condition represents a frightening deterioration in her physical and mental health, whether from ME-induced neurological damage, severe overmedication, trauma as a result of her circumstances, or some combination of all three. Though there is no certainty regarding how Karina was treated at [[Hammel Neurocenter]], the recommended treatment for ME in Denmark consists of Cognitive Behavioral Therapy (CBT), Graded Exercise Therapy (GET), occupational therapy and psychotropic medications.<ref name="EliotSmith20160404" />

==Court Case==

On February 26 2016, the Danish High Court heard an appeal by Karina’s parents against the guardianship order imposed by the District Court. This order had confirmed Kaj Stendorf as Karina’s permanent legal guardian. Mr Stendorf was the chief of police (now retired) in charge of Karina’s district when she was taken from her home by police against her will.

The appeal failed and the District Court’s order was upheld.

As of April 2016, Danish High Court Attorney Cristina Poblador from Homann law firm in Copenhagen has agreed to take on Karina's case (paid by Save4Children). Her family remain hopeful she will be returned home.

==Return Home==
In February 2016, Karina was moved to a rehabilitation centre. At that time Valerie Eliot Smith documents that she was strapped into a wheelchair, unable to speak, and appeared not to recognise her own father when he visited<ref>https://valerieeliotsmith.com/2018/06/25/karina-hansen-8-the-aftermath-continues/amp/</ref>.

In October 2016 Karina's ability to communicate with gestures was reported to be increasing, her mobility was improving and her parents had been able to visit on a regular basis during the preceding weeks.

On 17 October 2017 Karina was finally able to return home to her parents - first on a trial basis, and then permanently<ref>https://valerieeliotsmith.com/2018/06/25/karina-hansen-8-the-aftermath-continues/amp/</ref>.

==Media coverage==

The Danish media released the following articles on Karina and the Hansens' situation:

* [http://dagbladet-holstebro-struer.dk/holstebro/de-tog-vores-datter They took our daughter], DagBladet news, 10 Aug 2013.<ref name="DagBladet20130810" />
* [http://www.bt.dk/danmark/foraeldre-naegtet-at-se-syg-datter-mor-hvordan-skal-jeg-komme-vaek-herfra Parents forbidden to see ill daughter: 'Mom, how do I get out of here?'], BT news, 10 Aug 2013.<ref name="BTnewsDK20130810" />
* [http://ekstrabladet.dk/nationen/fik-datter-stjaalet-for-to-aar-siden-hjaelp-os-minister/5461897 Our daughter was stolen two years ago: Help us, minister], Ekstra Bladet, 27 Feb 2015.<ref name="EkstraBladet20150227" />

==Community activism==

There have been protests at the Hammel Neurocenter.

Every year, people send birthday cards.

A Danish group called [[Borgerretsbevaegelsen]] ("The Citizens' Rights Movement") is supporting Karina's case.<ref name="BorgerretBevaegelsen" />

==Learn more==

*2016, [https://valerieeliotsmith.com/2016/04/04/karina-hansen-4-timeline-torture-tragedy/ Karina Hansen 4: Timeline, Torture, and Tragedy], [[Valerie Eliot Smith]], 4 Apr 2016.<ref name="EliotSmith20160404" />
*2016, [http://valerieeliotsmith.com/2016/03/07/karina-hansen-3-update-march-2016/ Karina Hansen 3: Update March 2016], [[Valerie Eliot Smith]], 7 Mar 2016.<ref name="EliotSmith20160307" />
*2016, [http://valerieeliotsmith.com/2016/02/15/karina-hansen2the-ghost-in-the-room/ Karina Hansen 2: the Ghost in the Room], [[Valerie Eliot Smith]], 15 Feb 2016.<ref name="EliotSmith20160215" />
*2015, [http://slightlyalive.blogspot.co.uk/2015/10/justice-for-karina-hansen.html Justice for Karina Hansen]
*2015, [http://www.prohealth.com/library/showarticle.cfm?libid=21118 Hope for Karina Hansen With Help From Save4Children]
*2015, [http://www.meadvocacy.org/3_ways_to_help_karina_hansen_me_hostage_in_denmark 3 Ways to Help Karina Hansen - ME Hostage in Denmark]
*2014, [http://valerieeliotsmith.com/2014/07/01/karina-hansen-prisoner-of-denmark/ Karina Hansen - Prisoner of Denmark], [[Valerie Eliot Smith]], 1 Jul 2014.<ref name="EliotSmith20140701" />
*2014, [http://www.cfstreatmentguide.com/blog/a-year-later-karina-hansen-still-confined-in-mental-ward A Year Later - Karina Hansen still confined in mental ward]
*2013, [http://dxrevisionwatch.com/2013/05/11/something-rotten-in-the-state-of-denmark-karina-hansens-story/ Something rotten in the state of Denmark: Karina Hansen’s story]
*2013, [http://cfstreatment.blogspot.co.uk/2013/07/release-karina-hansen.html Release Karina Hansen]

==Talks & interviews==

*2014, [https://www.youtube.com/watch?v=WFnFcsT479c Send a Card, Save a Life]

==Online presence==

*[https://twitter.com/justice4karinah?lang=en Justice for Karina - Twitter]
*[https://www.facebook.com/JusticeForKarinaHansen/ Justice for Karina - Facebook]
*[http://xn--borgerretsbevgelsen-xxb.dk/ Borgerretsbevaegelsen website]

==See also==

==References==
<references>
<ref name="BorgerretBevaegelsen">{{citation
| title = Borgerretsbevaegelsen (The Citizen's Rights Movement, Denmark)
| type = website
| url = http://xn--borgerretsbevgelsen-xxb.dk/
}}</ref>
<ref name="BTnewsDK20130810">{{citation
| title = Parents forbidden to see ill daughter: 'Mom, how do I get out of here?'
| journal = BT News (Denmark)
| date = 10 Aug 2013
| url = http://www.bt.dk/danmark/foraeldre-naegtet-at-se-syg-datter-mor-hvordan-skal-jeg-komme-vaek-herfra
}}</ref>
<ref name="ChangeOrgKH">{{citation
| title = Petition: Karina is a severely ill ME sufferer forcibly removed from her home
| journal = Change.Org
| date = 2013
| url = https://www.change.org/p/karina-is-a-severely-ill-me-sufferer-forcibly-removed-from-her-home
}}</ref>
<ref name="Crowhurst2015">{{citation
| last1 = Crowhurst | first1 = Greg | authorlink1 = Greg Crowhurst
| title = Severe ME: Notes for Carers
| type = book
| date = 10 Nov 2015
| publisher = lulu.com
| url = https://books.google.com/books?id=3R_JCgAAQBAJ
}}</ref>
<ref name="DagBladet20130810">{{citation
| title = They took our daughter
| journal = DagBladet news (Denmark)
| date = 10 Aug 2013
| url = http://dagbladet-holstebro-struer.dk/holstebro/de-tog-vores-datter
| quote = They have not seen their adult daughter for almost six months after she was incarcerated in Hammel Neuro Center. Against her parents' wishes. Against her own desire. Not even the daughter's lawyer can get an explanation.
}}</ref>
<ref name="EkstraBladet20150227">{{citation
| title = Our daughter was stolen two years ago: Help us, minister
| journal = Ekstra Bladet news (Denmark)
| date = 27 Feb 2015
| url = http://ekstrabladet.dk/nationen/fik-datter-stjaalet-for-to-aar-siden-hjaelp-os-minister/5461897
}}</ref>
<ref name="EliotSmith20140701">{{citation
| last1 = Eliot-Smith | first1 = Valerie | authorlink1 = Valerie Eliot-Smith
| title = Karina Hansen - Prisoner of Denmark
| journal = Valerie Eliot-Smith Blog
| date = 1 Jul 2014
| url = http://valerieeliotsmith.com/2014/07/01/karina-hansen-prisoner-of-denmark/
}}</ref>
<ref name="EliotSmith20160215">{{citation
| last1 = Eliot-Smith | first1 = Valerie | authorlink1 = Valerie Eliot-Smith
| title = Karina Hansen 2: the Ghost in the Room
| journal = Valerie Eliot-Smith Blog
| date = 15 Feb 2016
| url = http://valerieeliotsmith.com/2016/02/15/karina-hansen2the-ghost-in-the-room/
}}</ref>
<ref name="EliotSmith20160307">{{citation
| last1 = Eliot-Smith | first1 = Valerie | authorlink1 = Valerie Eliot-Smith
| title = Karina Hansen 3: Update March 2016
| journal = Valerie Eliot-Smith Blog
| date = 7 Mar 2016
| url = http://valerieeliotsmith.com/2016/03/07/karina-hansen-3-update-march-2016/
}}</ref>
<ref name="EliotSmith20160404">{{citation
| last1 = Eliot-Smith | first1 = Valerie | authorlink1 = Valerie Eliot-Smith
| title = Karina Hansen 4: Timeline, Torture and Tragedy
| journal = Valerie Eliot-Smith Blog
| date = 4 Apr 2016
| url = https://valerieeliotsmith.com/2016/04/04/karina-hansen-4-timeline-torture-tragedy/
}}</ref>
<ref name="JustforKarina20140728">{{citation
| title = Skjoldans letter to §71 committee
| journal = Justice For Karina (website)
| date = 28 Jul 2014
| url = http://justiceforkarina.webs.com/apps/blog/show/42622428-skjoldans-letter-to-71-comitee
}}</ref>
<ref name="LetrDanishPM2015">{{citation
| title = Letter to the Danish Prime Minister for Karina Hansen
| journal = #MEAction
| date = 27 Oct 2015
| url = http://www.meaction.net/2015/10/27/sign-this-letter-to-the-danish-prime-minister-for-karina-hansen/
}}</ref>
<ref name="MEAssUK201505">{{citation
| title = Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS
| journal = ME Association (UK)
| date = 29 May 2015
| url = http://www.meassociation.org.uk/2015/05/23959/
}}</ref>
<ref name="MEGlobChron20151025KH">{{citation
| title = Karina Hansen
| journal = ME Global Chronicle | page = 6-21
| date = 25 Oct 2015
| url = http://let-me.be/download.php?view.24
}}</ref>
<ref name="Twisk2008">{{citation
| last1 = Twisk | first1 = Frank NM | authorlink1 = Frank Twisk
| last2 = Maes | first2 = Michael | authorlink2 = Michael Maes
| title = A review on cognitive behavorial 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.
| journal = Neuroendocrinology Letters | volume = 30| issue = 3| pages = 284–299
| date = 2008
| pmid = 19855350
| url = https://www.ncbi.nlm.nih.gov/pubmed/19855350
}}</ref>
<ref name="VoicefrShadow20130509">{{citation
| title = Karina Hansen is a severely ill Danish patient who was forcibly taken from her home
| journal = Voices from the Shadows (website)
| date = 9 May 2013
| url = http://voicesfromtheshadowsfilm.co.uk/2013/karina-hansen-is-a-severely-ill-danish-patient-who-was-forcibly-taken-from-her-home-update-may-2013-9th/
}}</ref>
</references>

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

The BMJ

2018-07-07T11:08:04Z

Jeshyr:Added BMJ cover image

'''The BMJ''' (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

[[File:TBMJcover4Wiki.jpg|upright|border|thumb|Cover image of The BMJ weekly print edition]]

==Peer review controversy==
An early version of the PACE reanalysis paper by [[Carolyn Wilshire]] et al was submitted to The BMJ and received two peer reviews,<ref name="Post on Science for ME">https://www.s4me.info/threads/michael-sharpe-skewered-by-johnthejack-on-twitter.3464/page-88#post-84643</ref> one which recommended publication, the other being described by Prof [[James Coyne]] as "patently unprofessional"<ref>https://jcoynester.wordpress.com/2017/05/11/patients-writing-about-their-health-condition-were-abused-by-a-peer-reviewer-and-silenced-by-bmj/</ref>.

This second review can be viewed in its entirety both on Coyne's blog and on the [[Science for ME]] forum.<ref name="Post on Science for ME" /> As part of his blog on the review, Coyne highlights a number of noteworthy points in it, including that:
*The reviewer notes that the paper is billed as a collaboration between patients and scientists, but questions whether any of the authors qualify as “clinicians” or “scientists.”
*The reviewer expresses doubts that the patients meet criteria for chronic fatigue syndrome.
*The reviewer reiterates the doubt the patients meet criteria for chronic fatigue syndrome and suggests that they were erroneously self-diagnosed.
*The reviewer suggests that the authors were erroneously self-diagnosed and went doctor-shopping until they found agreement.
*After earlier mentioning that he had not obtained the author’s published review, he questions whether it is a major review.

Additionally a comment on Coyne's blog on the review from the blogger Neuroskeptic says, "This is a bizarre, arrogant and unprofessional review. I say this as someone who has called PACE “solid” and “not ‘bad science'”. Wherever you stand on the issues here, this review is just shocking. Shame on the reviewer."

Professor [[Jonathan Edwards]], posting on the [[Science for ME]] forums, called for an apology from the BMJ, stating that he felt that the "reviewer and the journal have made complete fools of themselves".<ref>https://www.s4me.info/threads/bmj-peer-review-of-wilshire-et-al-re-analysis-of-pace-paper.4737/page-2#post-85800</ref>

The reanalysis was later submitted to and published by BMC Psychology.<ref>https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3</ref>

==Alleged bias==
[[Ellen Goudsmit]] wrote a paper detailing her accusation that the British Medical Journal had displayed bias towards the psychological model of ME/CFS.<ref>[http://freespace.virgin.net/david.axford/JCFS.pdf Chronic Fatigue Syndrome: Editorial Bias in the British Medical Journal (pdf)]</ref>

==Notable articles==
*1978, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf Epidemic myalgic encephalomyelitis]
*2004, [http://www.bmj.com/content/329/7472/928 What causes chronic fatigue syndrome?] (21 October)
*2011, [http://www.bmj.com/bmj/section-pdf/187262/5 Living with CFS/ME, by patient Ollie Cornes]
*2011, [http://www.bmj.com/content/342/bmj.d3780 Dangers of research into chronic fatigue syndrome] (Nigel Hawkes, June 22)
*2011, [http://www.bmj.com/content/342/bmj.d3956 Ending the stalemate] (Fiona Godlee, editor, June)

==Notable podcasts==
*2010, [https://soundcloud.com/bmjpodcasts/chronic-fatigue-syndrome Chronic fatigue syndrome]

==Online presence==
*[http://www.bmj.com/ The BMJ web site]
*[https://twitter.com/bmj_latest The BMJ Twitter]
*[https://www.facebook.com/thebmjdotcom/ The BMJ Facebook]

==Learn more==
*[https://en.wikipedia.org/wiki/The_BMJ The BMJ]

==References==
<references/>

[[Category:Journals]]

File:TBMJcover4Wiki.jpg

2018-07-07T11:04:27Z

Jeshyr:Cover image of The BMJ weekly print edition

Cover image of The BMJ weekly print edition

5-Hydroxytryptophan

2018-06-18T11:15:26Z

Jeshyr:Removed cleanup tag

'''5-Hydroxytryptophan''' (5-HTP) is a precursor to the neurotransmitter serotonin.<ref name=":1" />

==Theory==
The reaction that causes 5-HTP to become serotonin requires the action of the enzyme aromatic-L-amino-acid decarboxylase (AADC). [[Vitamin B6|Vitamin B<sub>6</sub>]] is also required as a cofactor.<ref name=":1" /> The same enzyme catalyzes a number of other reactions,<ref name=":1">{{cite web|title=AADC|url=http://www.hmdb.ca/proteins/HMDBP00278|website=Human Metabolome database|accessdate=1 May 2018|date=|last=|first=|archive-url=|archive-date=|dead-url=}}</ref> including:

* L-DOPA to [[dopamine]]
* L-[[phenylalanine]] to phenethylamine
* L-[[tyrosine]] to tyramine
* L-histidine to [[histamine]]
* L-[[tryptophan]] to tryptamine

5-HTP has been shown to increase serotonin levels in the central nervous system.<ref>{{Cite journal|last=Turner|first=Erick H|last2=Loftis|first2=Jennifer M|last3=Blackwell|first3=Aaron D|date=2006|title=Serotonin a la carte: Supplementation with the serotonin precursor5-hydroxytryptophan|url=https://escholarship.org/uc/item/58h866d5|journal=Pharmacology & Therapeutics|volume=109|issue=3|via=}}</ref>

==Evidence==
Reports about serotonin levels in ME/CFS patients are mixed. One study hypothesized, based off of their findings on tryptophan, that ME/CFS patients fell into two groups: a group with high brain serotonin, and a group with normal serotonin.<ref name=":0">{{Cite journal|last=Badawy AAB|first=AAB|last2=Morgan|first2=CJ|last3=Llewelyn|first3=MB|last4=Albuquerque|first4=SRJ|last5=Farmer|first5=A|date=2005|title=Heterogeneity of serum tryptophan concentration and availability to the brain in patients with the chronic fatigue syndrome.|url=https://www.ncbi.nlm.nih.gov/pubmed/15982993?dopt=Abstract|journal=Journal of Psychopharmacology|volume=19|issue=4|pages=385–391|via=}}</ref> Multiple studies have found high, low, or normal serotonin, due either to different diagnostic criteria or ME/CFS subgroups.<ref name=":0" />

==Risks and safety==
Because 5-HTP increases brain serotonin, users are at risk for [https://en.wikipedia.org/wiki/Serotonin_syndrome serotonin syndrome] if they also take other medications which increase brain serotonin,<ref name="webmd">{{cite web|title=5-HTP Uses, Side effects, Interactions, Doses, and Warnings|url=https://www.webmd.com/vitamins/ai/ingredientmono-794/5-htp|website=WebMD|accessdate=29 May 2018|date=|last=|first=|archive-url=|archive-date=|dead-url=}}</ref>. Medications which come under this category and which are commonly taken be ME/CFS patients include:
* Anti-depressant drugs
* Dextromethorphan (Robitussin DM, and others)
* Tramadol (Ultram)
Other medications, including other supplements, may also increase brain serotonin - make sure you tell your pharmacist and your doctor if you are taking 5-HTP.

==Costs and availability==

==Learn more==
*[https://en.wikipedia.org/wiki/5-Hydroxytryptophan Wikipedia - 5-Hydroxytryptophan]

==See also==
*[[Serotonin]]

==References==
<references />

[[Category:Amino acids]]
[[Category:Potential treatments]]
[[Category:Supplements]]

Primer for journalists

2018-06-15T03:09:14Z

Jeshyr:Fixed Chronic fatigue links previously pointing to disambiguation page

[[Myalgic Encephalomyelitis]] (M.E.), [[Chronic Fatigue Syndrome]] (CFS) and [[Chronic fatigue (symptom)|chronic fatigue]] (CF) are widely misunderstood. In this primer, 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 [[CFS]] is a debilitating lifelong illness and it is not the same as CF which is a symptom.

==What do we know?==
[[ME]] is a debilitating illness that has been recognized as a neurological condition by the World Health Organisation (WHO) since 1969.<ref name="WHOclass">reference needed for WHO class since 1969</ref>

It is a systemic neuroimmune condition characterized by [[post-exertional malaise]] (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 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.

In many parts of the world, it is commonly called [[Chronic Fatigue Syndrome]].

[[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).<ref>reference needed for NIH funding levels</ref> The [[Institute of Medicine]], a special advisory committee of the [[U.S. Department of Health and Human Services]] ([[HHS]]) (ref: 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==
The disease [[ME/CFS]] is diagnosed when a person does not recover from a flu-like illness, [[EBV]], [[mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and meets one or more 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><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."<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> Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity 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>

=== Pediatric ME/CFS ===
Children are also afflicted with ME/CFS.<ref>[http://www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-links Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association]</ref> ''See'': [[Pediatric]].

=== Prognosis ===
Prognosis for [[ME/CFS]] is generally poor. ''See'': [[Prognosis]]

=== Female to male ratio ===
Like many auto-immune and 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 is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> and some [[ME/CFS]] patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>

==ME vs CFS vs CF==

The name [[Myalgic Encephalomyelitis]] ([[ME]]) was coined following an [[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]] ([[CDC]]) following an [[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 condition, entirely separate conditions, 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 condition, 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 conditions are the same or different, and there is unlikely to be a resolution until firm [[biomarkers]] have been identified. As such, many patients and researchers use the term [[ME/CFS]].<ref name="Klimas20140621video" /> ''See:'' [http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS].

The name Chronic Fatigue Syndrome is itself controversial, as many consider it stigmatizing. In February 2016, Dr [[Anthony Komaroff]], who was part of the [[Centers for Disease Control]] ([[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 (symptom)|chronic fatigue]] (CF), which is a symptom of many different medical conditions (eg: anemia, Hepatitis, [[multiple sclerosis]], hypothyroidism, [[depression]], [[ME/CFS]]). "Chronic fatigue" is not a condition in its own right and it is incorrect and misleading to refer to [[ME/CFS]] as "chronic fatigue". Whilst fatigue is a component of [[ME/CFS]], many consider [[post-exertional malaise]] ([[PEM]]) to be the cardinal feature of ME/CFS.<ref>reference needed CCC</ref><ref name="IOM2015MECFS" />

==It is not tiredness==

=== Symptoms ===
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. There are many symptoms which people with [[ME/CFS]] experience, though those listed below are arguably the most common:

*[[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) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. 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>[http://solvecfs.org/unraveling-post-exertional-malaise/ Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm Post-Exertional Malaise - About.com Health - FMS/ME/CFS]</ref>

:Regarding [[PEM]] the [[CFIDS Association of America]] states: "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>

*[[Chronic fatigue (symptom)|Chronic fatigue]]
*Chronic pain
*[[Cognitive dysfunction]]
*[[Unrefreshing sleep]], and [[sleep dysfunction]]
*[[Orthostatic intolerance]], such as [[Postural orthostatic tachycardia syndrome]] ([[POTS]]) or [[Neurally mediated hypotension]] ([[NMH]])
*[[Neuroinflammation]]
*Neurological disturbances such as muscle spasms, numbness/tingling, sensory overload

===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 condition. As a result, [[ME/CFS]] symptoms are often considered to be medically unexplained, and therefore psychological in origin. Whilst it is true that the condition is poorly understood, many biological abnormalities have been found in a range of different body systems that have been found in [[ME/CFS]], particularly in the [[central nervous system]], autonomic nervous system, immune system and energy metabolism.<ref name="IOM2015MECFS" /> Unfortunately, none have yet proved to be specific or practical enough to [[ME/CFS]] as to be useful as a [[biomarker]] of the condition, and many were identified in small studies, which are in need of replication. Whilst there have been abnormalities which have been identified to be associated with the condition, it cannot yet be determined whether these are a cause or consequence of the condition.

*[[Neuroinflammation]] Japanese Neuroinflammation study<ref name="NakatomiY2014" />, Younger's Leptin study <ref name="JohnsonC20150126younger" />
*Reduced brain white matter study by [[Stanford ME/CFS Initiative]]<ref name="StanfordMed20141028" /> New York Times Article with brain images.<ref name="TullerD20141124brain" /> Three major brain abnormalities.<ref>[http://privatehealthcarereports.com/chronic-fatigue-patients-suffer-3-major-brain-abnormalities-findings-may-lead-to-clearer-diagnosis/ Chronic Fatigue Patients Suffer 3 Major Brain Abnormalities; Findings May Lead To Clearer Diagnosis. - Private Health Care]</ref>
*Immune findings: [[Mady Hornig]] & [[Ian Lipkin]]<ref name="Hornig20150201immune" />
*[[Metabolic features of chronic fatigue syndrome]]
*Autonomic nervous system:
*[[Natural killer cell]] findings
*Gut dysbiosis
*[[Rituximab]]

===Epidemiology===

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

*Level of disability (Norwegian study HRQoL)<ref name="Hvidberg2015" /> (suggests quality of life is LOWER than for many cancers, heart diseases, brain stroke, diabetes I & II, rheumatoid arthritis, chronic renal failure, sclerosis, schizophrenia, COPH, etc)

===Causes & triggers===

*Outbreaks - see [[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?)<ref name="Hickie2006"/>
*Non-viral triggers - trauma, chemical

===Persistence hypotheses===

*Immune findings

===Prognosis===

==== Three stages ====
Dr. [[David Bell]], who serves on the Scientific Advisory Board for the [[Open Medicine Foundation]], discusses three stages of the disease in the article [http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS].

*At the '''''first stage''''', there is an acute illness where [[EBV]] is likely responsible for most adolescents but there is no standard viral illness. The initial virus likely fades away in a week and the patient feels better and is ready for regular activities. He adds "in a person with a gradual onset of symptoms, this stage would be different."
*'''''Second stage''''' "occurs when the symptoms do not disappear but persist for months to years in roughly the same severity. There is little variation day-to-day, and this time is very confusing. Many medical providers are contacted, most giving conflicting opinions varying from psychological disorders to possible exotic infections, but the tests come back normal."
*In the '''''third stage''''' patients will have mild, gradual improvements over years and patients adjust their lives to the symptoms. Patients may look well and recovery is thought to have taken place. Some patients will make a full recovery in 3-4 years but "recovery and improvement are completely different."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By: David S. Bell, MD]</ref>

==== Poor long-term prognosis ====
Dr. [[David Bell]] has great concern for patients 35 years old who had become ill as teens and has been studying a group that first became ill in 1985. "Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties." It is now understood that persons with [[ME/CFS]] do not have a good long-term prognosis and it is actually poor as "full recovery from untreated [[CFS]] is rare."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By: David S. Bell, MD]</ref>

'''Few Return to Pre-illness State of Functioning'''

In about 40% of people with [[ME/CFS]], the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.<ref name="CairnsR2005prog" /><ref name="JoyceJ1997prog" /><ref name="Johnson20130706" />

=== Severely ill ===
It is estimated that 25% of [[ME/CFS]] patients are severely ill and are housebound or bedbound.<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>

===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" /> 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.

Two treatments that have garnered much attention are [[Ampligen]] and [[Rituximab]]. Many people have reported enormous benefit from [[Ampligen]], some doctors have been prescribing it for [[ME/CFS]] for decades. Attempts to obtain [[FDA]] approval for [[Ampligen]] in the US have failed so, despite its usefulness, it is unavailable to many. [[Rituximab]], a lymphoma drug, showed promising but not consistent results in initial trials in [[Norway]], and there are groups crowdsourcing funding for further trials in other countries. [[Jarred Younger]] announced in March 2016 that he will be undertaking a trial of [[Low dose naltrexone]] ([[LDN]]) in [[ME/CFS]].<ref>http://www.psy.uab.edu/younger/research.html</ref>

====Exercise as treatment====

Previously, two common treatment recommendations for [[ME/CFS]] were [[Graded Exercise Therapy]] ([[GET]]) and [[Cognitive behavioral therapy]] ([[CBT]]). These treatments are based on the hypothesis that the condition might have begun with a viral infection but has been perpetuated by [[deconditioning]] from lack of activity, and fear and avoidance of activity. GET & CBT are aimed at addressing these hypothesized causes by challenging the 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 may actually be 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.<ref name="Phoenix20160222Norway2012" />

The [[PACE trial]], published in 2011, is the largest [[Graded Exercise Therapy]] trial ever conducted. It has received much publicity as a result of its claims of recovery rates, 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>http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext</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"/>, psychologist Dr. [[Carolyn Wilshire]]<ref name="Wilshire C, et al, 2017"/> 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" /> 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, neurological, autonomic and 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" /><ref>reference needed - Workwell Foundation studies</ref><ref>reference needed - the Lights epigenetic changes post-exercise</ref>

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 push to increase activity

===Severely ill patients===
Considerable variation exists in the severity of the condition. 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 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" /> 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]].

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 instances of deaths which have been attributed to the condition (see [[Sophia Mirza]], [[Merryn Crofts]]).

===Patients & psychiatry/psychology===

*Objections & scope
*Mind-body dualism
*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]
*[[Patient mental health]]

===Stigmatization===

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

===Accusations of harassment===

*Tiny %
*No arrests or convictions
*Poor treatment of patients not mentioned. [[Ean Proctor]] and "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>

==Expert opinions==

===Quotes from ME/CFS experts and patients===

*[http://thoughtsaboutme.com/quotes/ Thoughts About ME - List of Quotes]
*[[Individual Quotes]]

===Doctors for expert opinions===
[[Daniel Peterson]], [[Nancy Klimas]], [[Ronald Tompkins]], [[Ron Davis]], [[Lucinda Bateman]], [[Alan Pocinki]], [[Susan Levine]], [[Jose Montoya]], [[Anthony Komaroff]], [[Benjamin Natelson]], [[Lily Chu]], [[Peter Rowe]] For others: see [[Category:Clinicians]]

===Researchers===
[[Leonard Jason]], [[Mady Hornig]], [[Ian Lipkin]], [[Maureen Hanson]], [[Betsy Keller]], [[Jarred Younger]], [[Neil McGregor]], [[Gunnar Gottschalk]], [[Suzanne Vernon]], [[Staci Stevens]] For others: see [[Category:Researchers]]

===Patients===
====U.S.====

*[[Jennifer Brea]]
*[[Ryan Prior]]
*[[Julie Rehmeyer]]

====U.K.====
*[[Jessica Taylor-Bearman]]

====Australia====

====Ireland====

*[[Tom Kindlon]]

===Patient groups & charities===

'''[[:Category:Patient groups|Patient groups]]'''
<div style="column-count:3;-moz-column-count:3;-webkit-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:Swedish patient groups|Swedish patient groups]]
</div>

==History==

*[[Osler's Web]] is a book on the early history of CFS.
*[[Thirty Years of Disdain]] picks up on the ME/CFS history where Osler's Web leaves off.
*[[List of news articles on ME and CFS]]
*[[Sophia Mirza]]'s life ended due to CFS.
*[http://me-pedia.org/wiki/Disabled_in_Tory_Britain#PACE_trial UK agencies involved in the implementation of the PACE trial. Disabled in Tory Britain - PACE trial]

==Other tips==

*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 (symptom)|chronic fatigue]] (CF). [[CFS]], [[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.

==Learn more==

*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis] (2018) Guide for Caretakers
*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?] By the [[Open Medicine Foundation]]
*[http://youtu.be/c2vIQ92wU9Y ME/CFS Diagnosis and Name with Dr Nancy Klimas (video)]
*[[Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education]] (CDC Video, 2016)
*[[Institute of Medicine report]]
*[[Unrest]] (2017)
*[[Jessica Taylor-Bearman]]
*[[Forgotten Plague]] (2015) (see [https://www.youtube.com/watch?v=VsQcmKT3zSo trailer])
*[[Notable studies]]

==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)]]
*[[Postviral fatigue syndrome]] (PVFS)

==References==
<references>
<ref name="CairnsR2005prog">{{citation
| last1 = Cairns | first1 = R | authorlink1 = Ruth Cairns
| last2 = Hotopf | first2 = M | authorlink2 = Matthew Hotopf
| title = A systematic review describing the prognosis of chronic fatigue syndrome
| journal = Occupational Medicine | volume = 2005;55 | page = 20–31
| doi = 10.1093/occmed/kqi013
| url = http://occmed.oxfordjournals.org/content/55/1/20.full.pdf
}}</ref>
<ref name="JohnsonC20150126younger">{{citation
| last1 = Johnson | first1 = Cort | authorlink1 = Cort Johnson
| title = Getting “Younger”: Leptin, Chronic Fatigue Syndrome and Fibromyalgia]
| date = 26 Jan 2015
| url = http://www.cortjohnson.org/blog/2015/01/26/getting-younger-leptin-chronic-fatigue-fibromyalgia/
}}</ref>
<ref name="Geraghty, 2017">
{{Citation
| 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>
<ref name="Hickie2006">{{citation
| 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 = 2006; 333:575
| date = 14 Sep 2006
| pmid = 16950834 | doi = 10.1136/bmj.38933.585764.AE
| url = http://www.bmj.com/content/333/7568/575.long
}}</ref>
<ref name="Hornig20150201immune">{{citation
| 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 = Vol 1, No. 1
| date = 1 February 2015
| url = http://advances.sciencemag.org/content/1/1/e1400121
}}</ref>
<ref name="Hvidberg2015">{{citation
| 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 = 6 Jul 2015
| doi = 10.1371/journal.pone.0132421
| url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421
}}</ref>
<ref name="IACFSME2014primer">{{citation
| 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 = http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf
}}</ref>
<ref name="ICC2011criteria">{{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 = Baumgarten-Austrheim | first12= B | authorlink12= Barbara Baumgarten-Austrheim
| last13 = Bell | first13= DS | authorlink13= David Bell
| last14 = Carlo-Stella | first14= N | authorlink14= Nicoletta Carlo-Stella
| last15 = Chia | first15= J | authorlink15= John Chia
| last16 = Darragh | first16= A | authorlink16= Austin Darragh
| last17 = Jo | first17= D | authorlink17= Daehyun Jo
| last18 = Lewis | first18= DP | authorlink18= Donald Lewis
| last19 = Light | first19= AR | authorlink19= Alan Light
| last20 = Marshall-Gradisnik | first20= S | authorlink20= Sonya Marshall-Gradisnik
| last21 = Mena | first21= I | authorlink21= Ismael Mena
| last22 = Mikovits | first22= JA | authorlink22= Judy Mikovits
| last23 = Miwa | first23= K | authorlink23= Kunihisa Miwa
| last24 = Murovska | first24= M | authorlink24= Modra Murovska
| last25 = Pall | first25= ML | authorlink25= Martin Pall
| last26 = Stevens | first26= SR | authorlink26= Staci Stevens
| title = Myalgic encephalomyelitis: International Consensus Criteria
| journal = Journal of Internal Medicine | volume = 270 | issue = 4 | page = 327–338
| date = 22 August 2011
| pmid = 21777306 | doi = 10.1111/j.1365-2796.2011.02428.x
| url = http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
}}</ref>
<ref name="IOM2015MECFS">{{citation
| last1 = Institute of Medicine (USA)
| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
| publisher = The National Academies Press | location = Washington, DC, USA
| date = 10 February 2015
| isbn = 978-0-309-31689-7
| url = http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
}}</ref>
<ref name="Jason, Katz, 2017">
{{Citation
| 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="Johnson20130706">{{citation
| last1 = Johnson | first1 = Cort | authorlink1 = Cort Johnson
| title = ME/CFS Prognosis
| journal = Health Rising
| date = 6 July 2013
| url = http://www.cortjohnson.org/about-chronic-fatigue-syndrome-mecfs/prognosis/
}}</ref>
<ref name="JoyceJ1997prog">{{citation
| last1 = Joyce | first1 = J | authorlink1 = J Joyce
| last2 = Hotopf | first2 = M | authorlink2 = Matthew Hotopf
| last3 = Wessely | first3 = Simon | authorlink3 = Simon Wessely
| title = The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review
| journal = QJM | volume = 90 | issue = 3
| date = 1 March 1997
| pmid = 9093600 | doi = 10.1093/qjmed/90.3.223
| url = http://qjmed.oxfordjournals.org/content/90/3/223.long
}}</ref>
<ref name="Klimas20140621video">{{citation
| last1 = Klimas | first1 = Nancy | authorlink1 = Nancy Klimas
| title = ME/CFS Diagnosis and Name with Dr. Nancy Klimas (video)
| date = 21 Jun 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 = 17 Feb 2016
| url = http://youtu.be/hRdn4A2SGic
}}</ref>
<ref name="MEACTIONpacepetition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Petition: Misleading Claims Should Be Retracted
| journal = #MEAction
| date = Oct 2015
| url = http://my.meaction.net/petitions/pace-trial-needs-review-now
}}</ref>
<ref name="MEACTION20160313openletr">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = 24 organisations in 14 countries tell QMUL: Release the PACE data
| date = 13 Mar 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">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 29 May 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">{{citation
| 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 = 2014 Jun;55(6) | page = 945-50
| date = 24 Mar 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 (USA)
| title = NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
| date = 9 Dec 2014
| url = https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
}}</ref>
<ref name="openletrLANCET2">{{citation
| 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 = 10 Feb 2016
| website = Virology Blog
| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/
}}</ref>
<ref name="StanfordMed20141028">{{citation
| last1 = Stanford Medicine - News Center
| title = Study finds brain abnormalities in chronic fatigue patients]
| date = 28 Oct 2014
| url = https://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html
}}</ref>
<ref name="TullerD20141124brain">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder
| journal = New York Times | volume = Well Blogs
| date = 24 Nov 2014
| url = http://well.blogs.nytimes.com/2014/11/24/brains-of-people-with-chronic-fatigue-syndrome-offer-clues-about-disorder/
}}</ref>
<ref name="TwiskF2015">{{citation
| 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 = 2015, 1(2): 007
| date = 11 Jul 2015
| url = http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf
}}</ref>
<ref name="Phoenix20160222Norway2012">{{citation
| title = Norwegian patient survey: Experiences of therapeutic approaches (2012)
| journal = Phoenix Rising Forum
| date = 22 Feb 2016
| url = http://forums.phoenixrising.me/index.php?threads/norwegian-patient-survey-experiences-of-therapeutic-approaches-2012-update.43193/
}}</ref>
<ref name="viroblogMECFS">{{citation
| title = List of ME/CFS articles published at Virology Blog
| url = http://www.virology.ws/mecfs/
}}</ref>
<ref name="DerekPrisk2009">{{citation
| last1 = Pheby | first1 = D | authorlink1 = Derek Pheby
| last2 = Saffron | first2 = L | authorlink2 = Lisa Saffron
| 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>
<ref name="Wilshire C, et al, 2017">
{{Citation
| 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>
</references>
[[Category:Primers]]

Primer for the public

2018-06-15T03:06:36Z

Jeshyr:Fixed Chronic fatigue link previously pointing to disambiguation page

'''Primer for the public''' offers a broad audience, an abundance of detailed information on [[Myalgic Encephalomyelitis]] (ME) and [[Chronic Fatigue Syndrome]] (CFS) are complex, chronic, and poorly understood medical conditions. ME was first categorized as a neurological disease by the World Health Organization in 1969. CFS was first formally defined by the United States [[Centers for Disease Control]] in 1988 as a framework for researching unexplained chronic fatigue associated with a mononucleosis-like syndrome. There remains a lack of consensus among members of the medical and research communities regarding the equivalence of ME and CFS. Some believe that CFS is intended to describe the same disease entity as ME, while others believe that they are distinct conditions but with overlapping symptom profiles. In deference to this lack of consensus, the combined term '[[ME/CFS]]' is often used.

== Disease onset and course of illness==
The disease [[ME/CFS]] is diagnosed when a person does not recover from a flu-like illness, [[EBV]], [[Mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and meets one or more 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><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."<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> Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity 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>

=== Female to male ratio ===
Like many auto-immune and 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 is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>

=== Pediatric ME/CFS ===
Children are also afflicted with ME/CFS.<ref>[http://www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-links Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association]</ref> ''See'': [[Pediatric]].

=== Prognosis ===
Prognosis for ME/CFS is generally poor. ''See'': [[Prognosis]]

== 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]] and a few CFS/ME. ''See:'' [http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS].

The symptom [[Chronic fatigue (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&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 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 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, USA experienced an outbreak during 1984-1985. The [[Centers for Disease Control]] (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> [[Postviral fatigue syndrome]] (PVFS) is the next frontier of the psychological paradigm keeping control of an organic disease and have been laying groundwork to do so.<ref>[http://forums.phoenixrising.me/index.php?threads/elle-anecdotes-used-to-promote-osullivan-complain-shes-being-trolled.46176/ Mind Games - ELLE Magazine September 2016 - Phoenix Rising - '''ELLE''' Anecdotes used to promote O'Sullivan, complain she's being trolled]</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"/>

==Disease impact ==

"An estimated 17-20 million people suffer from ME/CFS worldwide, and 25% of them have a very severe form of it."<ref>[https://raisingawarenessforcfs.wordpress.com/2011/01/31/raising-awareness-for-cfsmecfids/ Raising Awareness for ME/CFS - Jan. 2011]</ref><ref>[http://mecfsdocumentary.com/sample-page/ ME/CFS Documentary - About ME/CFS]</ref> The 25% of patients who are severely ill are either bed-bound, wheelchair bound, or are housebound or nearly so.<ref>[http://www.25megroup.org/home.html The 25% M.E. Group Website Support Group for Severe M.E. Sufferers]</ref> The [[ME/CFS Severely Ill, Big Data Study]] is focused on this 25%.

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>[http://www.highteaforme.com/what-is-mecfs/ Why ME? - High Tea for ME]</ref> Children and adolescents are also diagnosed.<ref>[http://www.cdc.gov/cfs/pediatric/index.html Pediatric CFS - CDC]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-home-page Pediatric ME/CFS - MASS CFIDS/ME FMS]</ref>

=== U.S. ===
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>[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness]</ref> Some CFS patients can work with [https://www.masscfids.org/job-accommodations Job Accommodations] but 1/3 to 1/2 become unemployed and 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>

==== Female to male ratio ====
Like many auto-immune and 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 is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>

[[Jennifer Brea]] gives a [https://en.wikipedia.org/wiki/Women's_Media_Center WMC] Live radio interview addressing F/M auto-immune ratio and the disease [https://secure-hwcdn.libsyn.com/p/1/c/3/1c390d4707a99658/WMCLive_Episode159.mp3?c_id=11198959&expiration=1458320878&hwt=eb06639b1ec5ae7b7fd4e0fd83cc70f9 at 5:00].

== Symptoms ==

=== Hallmark symptom ===
*[[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) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. 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>[http://solvecfs.org/unraveling-post-exertional-malaise/ Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm Post-Exertional Malaise - About.com Health - FMS/ME/CFS]</ref>

:Regarding PEM the [[CFIDS Association of America]] states: "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>

=== Core and additional symptoms (see IOM Clinicians Guide below) ===
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[Orthostatic intolerance]]
*[[POTS]]
*[[Cognitive dysfunction]]
*[[Unrefreshing sleep]]
*[[Chronic fatigue (symptom)|Chronic fatigue]]
*[[Chronic pain]]
*Immune Impairment
*Infection
</div>

====US Government guides on symptoms====
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*The [[Institute of Medicine report]] - IOM [http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide]
*[http://www.cdc.gov/cfs/symptoms/index.html CDC - CFS Symptoms]
</div>

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

=== Other symptoms, comorbids ===
*Neurologic impairments - ME: [[ICC]]<ref>[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427890/ Myalgic encephalomyelitis: International Consensus Criteria - Wiley - Journal of International Medicine]</ref>
*[[Fibromyalgia]], [[Irritable bowel syndrome]], [[Temporomandibular joint disorder]] (TMJ) and [[Multiple Chemical Sensitivity]]<ref>[http://solvecfs.org/what-is-mecfs/ What is ME/CFS? - Solve ME/CFS Initiative]</ref>

==== Expanded lists of symptoms ====
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">

*[http://chronicfatigue.about.com/od/whatischronicfatigue/a/cfs_symptoms.htm Chronic Fatigue Syndrome Symptoms - The Monster List!]

*[http://solvecfs.org/what-is-mecfs/ What are the symptoms of ME/CFS?]

</div>

==Prognosis==
=== Three stages ===
Dr. [[David Bell]], who serves on the Scientific Advisory Board for the [[Open Medicine Foundation]], discusses three stages of the disease in the article [http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS].

*At the '''''first stage''''', there is an acute illness where [[EBV]] is likely responsible for most adolescents but there is no standard viral illness. The initial virus likely fades away in a week and the patient feels better and is ready for regular activities. He adds "in a person with a gradual onset of symptoms, this stage would be different."
*'''''Second stage''''' "occurs when the symptoms do not disappear but persist for months to years in roughly the same severity. There is little variation day-to-day, and this time is very confusing. Many medical providers are contacted, most giving conflicting opinions varying from psychological disorders to possible exotic infections, but the tests come back normal."
*In the '''''third stage''''' patients will have mild, gradual improvements over years and patients adjust their lives to the symptoms. Patients may look well and recovery is thought to have taken place. Some patients will make a full recovery in 3-4 years but "recovery and improvement are completely different."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By David S. Bell, MD]</ref>

=== Poor long-term prognosis ===
Dr. Bell has great concern for patients 35 years old who had become ill as teens and has been studying a group that first became ill in 1985. "Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties." It is now understood that persons with ME/CFS do not have a good long-term prognosis and it is actually poor as "full recovery from untreated CFS is rare."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By David S. Bell, MD]</ref>

'''Few Return to Pre-illness State of Functioning'''

In about 40% of people with ME/CFS, the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.<ref name="CairnsR2005prog"/><ref name="JoyceJ1997prog"/><ref name="Johnson20130706"/>

== Drugs, treatments and therapies ==
There are no approved drugs, appropriate treatments or reliable therapies for ME/CFS.

===Controversy===
Psychiatry has taken an inappropriate lead and treatment path for a biological disease. In the UK, [[GET]] and [[CBT]] are employed by ME Clinics. [[Exercise]] exacerbates symptoms and can further injure patients.<ref>[http://slightlyalive.blogspot.com/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS - Slightly Alive - By: Mary Schweitzer]</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 are utilized usually with poor and even damaging results.<ref>[http://drmyhill.co.uk/wiki/CFS_or_depression_-_what_are_the_differences CFS or depression - what are the differences - Dr. Myhill.co.uk]</ref>

Treating a biological disease as a mental illness is cost effective. The drugs are inexpensive 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 timeframe.<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>

Charlatans claim they can cure CFS ("There is no cure"<ref>[http://www.cdc.gov/cfs/management/index.html Management of CFS - CDC]</ref>) when in reality they may be able to treat [[Chronic fatigue (symptom)|chronic fatigue]] (CF). Some people misdiagnosed and "recovered" from CFS most likely had CF or a bad year or two with [https://en.wikipedia.org/wiki/Infectious_mononucleosis Mononucleosis] along with a bout or two of [https://en.wikipedia.org/wiki/Influenza Influenza]. These individuals were experiencing a proper immune response whereas ME/CFS is an ongoing improper immune response.

=== 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 [[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> [[MEAction]] reports on this ongoing process.

== Different diagnostic criteria used worldwide ==
=== Currently used ===
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[Fukuda criteria]] (Sometimes referred to as CDC Criteria)
*[[Canadian Consensus Criteria]] (CCC)
*[[Oxford criteria]]
*[[International Consensus Criteria]] (ICC)
*[[Reeves criteria]] (Sometimes called [[Empirical definition]])
*[[SEID]] (Recommended but not adopted.)
</div>

=== Currently not in use ===

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

=== Current ===
*[[NIH Post-Infectious ME/CFS Study]] is outlined by Shannon Firth; Editor Dr. [https://en.wikipedia.org/wiki/Sanjay_Gupta Sanjay Gupta] in the article "NIH Gears Up for First-Ever Chronic Fatigue Study".<ref>[http://www.medpagetoday.com/Neurology/GeneralNeurology/56772 NIH Gears Up for First-Ever Chronic Fatigue Study - MedPage Today]</ref> An Open Letter from [[Mary Schweitzer]] to Dr. Gupta about the study.<ref>[http://slightlyalive.blogspot.com/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS From Mary Schweitzer]</ref>
*Dr. [[Derek Enlander]] of Mount Sinai, NY has announced a study to prove or disprove exercise as a treatment for ME/CFS patients. (Begin at 17:30 of the video.)<ref>[https://www.youtube.com/watch?v=tVU8V4OWbVY&feature=youtu.be Dr. Derek Enlander - ME/CFS Alert Ep. 77 17:30 for Exercise Study]</ref>

=== Completed ===
*[[Metabolic features of chronic fatigue syndrome]] by the [[Open Medicine Foundation]] show blood chemical signature. [[ME/CFS Severely Ill, Big Data Study]]
*[[Cytokine]] research by [[Mady Hornig]] and [[Ian Lipkin]] show Immune Signatures. Columbia University Mailman School of Public Health (With video)<ref>[https://www.mailman.columbia.edu/public-health-now/news/scientists-discover-robust-evidence-chronic-fatigue-syndrome-biological Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is a Biological Illness - Columbia University Mailman School of Public Health]</ref><ref>[http://simmaronresearch.com/2016/03/are-chronic-fatigue-syndrome-mecfs-and-fibromyalgia-immune-exhaustion-disorders/ Are Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Immune Exhaustion Disorders? Simmaron Research - By: Cort Johnson]</ref>
*[[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]] by [[Stanford ME/CFS Initiative]]
*Illness progression in chronic fatigue syndrome: a shifting immune baseline<ref name="IllnessProgressionBMC2016"/>
*[[National Centre for Neuroimmunology and Emerging Diseases]] claim to have a biomarker screening test.
*[[Institute of Medicine report]]

== Recommended viewing ==

==== Documentary ====
*[[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)

*[[Unrest]] is a US documentary film that will air on PBS's Independent Lens in 2018. [[Jennifer Brea]], a person with [[ME]], directs. (2017)

==== Mini-doc & Short film ====
*[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] is a [https://www.youtube.com/watch?v=9_HwOUiImvw Palo Alto Online, US Mini-Doc on Youtube]. It documents 3 people with [[CFS]] suffering from the same disease in varying degrees of illness. (2015)

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

====Shorts ====
* #[[MillionsMissing]] provides a <5 min. short UK Video [http://millionsmissing.org/learn/?utm_content=bufferf61ee&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 'What Is M.E.?'] Discusses the disease impact on several people with [[ME]]. (2016)

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

==== Talks and interviews ====
*[http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose What happens when you have a disease doctors can't diagnose] Jennifer Brea gives a [https://en.wikipedia.org/wiki/TED_(conference) TED Talk] to explain her psychiatric misdiagnosis of [https://en.wikipedia.org/wiki/Conversion_disorder Conversion disorder], her correct diagnosis of [[Myalgic encephalomyelitis]], the disease impact on her life and how women are more often to receive a psychiatric misdiagnosis for a biologic disease. (2016)

*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====
:'''USA'''

:[[Centers for Disease Control]] (CDC)
:*[https://www.cdc.gov/cfs/pediatric/factsheets.html Factsheets - Pediatric] Factsheets for Healthcare Professionals, Parents, and Education Professionals. (2014)

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

:[[Institute of Medicine]] (IOM)
:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts] From the [[Institute of Medicine report]]. (2015)

:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/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]

:'''USA'''

:[[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)

:'''USA'''
:[[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&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 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

==Disputed therapies==
*[[PACE trial]] is a highly controversial study based on [[GET]] and [[CBT]] as therapies for ME/CFS patients. Patients, caretakers, ME/CFS charities and organizations as well as many clinicians, researchers, and others oppose this study due to [[outcome switching]] and other issues. The therapies are not just useless, they are injuring patients. (See Heading: "Drugs, treatments and therapies" and [http://me-pedia.org/wiki/Category:Open_letters Open Letters].) [[David Tuller]] has written and spoken at length about the PACE and [[FINE trial]].

*[[Lightning Process]] A "therapy" misused for the disease ME/CFS.

==History==
*[[Osler's Web]] is a book on the early history of CFS.
*[[Thirty Years of Disdain]] picks up on the ME/CFS history where Osler's Web leaves off.
*[[List of news articles on ME and CFS]]
*[[Sophia Mirza]]'s life ended due to CFS.
*[http://me-pedia.org/wiki/Disabled_in_Tory_Britain#PACE_trial UK agencies involved in the implementation of the PACE trial. Disabled in Tory Britain - PACE trial]

== Learn more ==
<div style="column-count:4;-moz-column-count:4;-webkit-column-count:4">
*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis] (2018) Guide for Caretakers
*[[List of outbreaks]]
*[[Brain imaging]]
*[[Natural killer cell]]
*[[Vagus nerve infection hypothesis]]
*[[Ampligen]]
*[[Rituximab]]
*[[Patient mental health]]
*[[Karina Hansen]]
*[[Neuroinflammation]]
*"[[In the Expectation of Recovery]]" by [[Centre for Welfare Reform]]
*[[List of acronyms]]
</div>

== See also ==
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[Blood donation]]
*[[Primer for family, friends and care providers]]
*[[Primer for patients]]
*[[Fibromyalgia]]
*[[25 Percent ME Group]]
*[[Postviral fatigue syndrome]]
</div>

== Further reading ==

===Blogs and letters===
*ME/CFS is NOT Depression. Lack of energy, not desire.<ref>[http://chronicfatigue.about.com/b/2011/12/17/chronic-fatigue-syndrome-vs-depression-one-doctors-view.htm Chronic Fatigue Syndrome vs. Depression: One Doctor's View Lack of Energy or Lack of Desire? About.com Health FMS/ME/CFS]</ref><ref>[http://www.sleepydust.net/CHRONIC-FATIGUE-SYNDROME-AND-DEPRESSION.html Are ME/CFS & Depression The Same Thing? - Sleepy Dust]</ref><ref>[http://drmyhill.co.uk/wiki/CFS_or_depression_-_what_are_the_differences CFS or depression - what are the differences - Dr. Myhill.co.uk]</ref>
*[http://me-pedia.org/wiki/Category:Open_letters Open Letters]: Patients, doctors, researchers, advocates, caretakers and other interested parties have been writing!

== Other resources ==
*[https://voat.co/v/CFS/new VOAT: CFS]
*[[About.com Health FMS/ME/CFS]]

== References ==
<references>

<ref name="IllnessProgressionBMC2016">{{Citation
| last1 = Russell | first1 = Lindsey | authorlink1 = Linday Russell
| last2 = Broderick | first2 = Gordon | authorlink2 = Gordon Broderick
| last3 = Taylor | first3 = Renee | authorlink3 = Renee Taylor
| last4 = Fernandes | first4 = Henrique | authorlink4 = Henrique Fernandes
| last5 = Harvey | first5 = Jeanna | authorlink5 = Jeanna Harvey
| last6 = Barnes | first6 = Zachary | authorlink6 = Zachary Barnes
| last7 = Smylie | first7 = AnneLiese | authorlink7 = AnneLiese Smylie
| last8 = Collado | first8 = Fanny | authorlink8 = Fanny Collado
| last9 = Balbin | first9 = Elizabeth | authorlink9 = Elizabeth Balbin
| last10 = Katz | first10 = Ben | authorlink10 = Ben Katz
| last11 = Klimas | first11 = Nancy | authorlink11 = Nancy Klimas
| last12 = Fletcher | first12 = Mary Ann | authorlink12 = Mary Ann Fletcher
| display-authors =
| title = Illness progression in chronic fatigue syndrome: a shifting immune baseline
| journal = BMC Immunology | date = 10 Mar 2016 | volume = 17(1) | page = 3
| pmid = 26965484 | doi = 10.1186/s12865-016-0142-3
}}</ref>

<ref name="IOM2015MECFS">{{citation
| last1 = Institute of Medicine (USA)
| last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| display-authors =
| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
| date = 10 February 2015
| url = http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
}}</ref>



<ref name="CairnsR2005prog">{{citation
| last1 = Cairns | first1 = R | authorlink1 = Ruth Cairns
| last2 = Hotopf | first2 = M | authorlink2 = Matthew Hotopf
| title = A systematic review describing the prognosis of chronic fatigue syndrome
| journal = Occupational Medicine | volume = 2005;55 | page = 20–31
| doi = 10.1093/occmed/kqi013
| url = http://occmed.oxfordjournals.org/content/55/1/20.full.pdf
}}</ref>

<ref name="Johnson20130706">{{citation
| last1 = Johnson | first1 = Cort | authorlink1 = Cort Johnson
| title = ME/CFS Prognosis
| journal = Health Rising
| date = 6 July 2013
| url = http://www.cortjohnson.org/about-chronic-fatigue-syndrome-mecfs/prognosis/
}}</ref>

<ref name="JoyceJ1997prog">{{citation
| last1 = Joyce | first1 = J | authorlink1 = J Joyce
| last2 = Hotopf | first2 = M | authorlink2 = Matthew Hotopf
| last3 = Wessely | first3 = Simon | authorlink3 = Simon Wessely
| title = The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review
| journal = QJM | volume = 90 | issue = 3
| date = 1 March 1997
| pmid = 9093600 | doi = 10.1093/qjmed/90.3.223
| url = http://qjmed.oxfordjournals.org/content/90/3/223.long
}}</ref>
</references>

[[Category:Primers]]

Dedra Buchwald

2018-06-15T03:05:02Z

Jeshyr:/* Notable studies */ Fixed Chronic fatigue link previously pointing to disambiguation page

[[File:Dedra Buchwald.png|200px|thumb|right|Source:wsu.edu]]
'''Dedra Buchwald''', MD is a primary care physician, professor of the College of Medicine at Washington State University, and the director of the Institute for Research and Education to Advance Community Health. She is currently studying chronic disease in American Indian, Alaska Native, Native Hawaiian, and Pacific Islander communities.<ref>https://medicine.wsu.edu/2016/08/24/new-grant-study-chronic-disease-nativepacific-populations/</ref><ref>http://www.ucdenver.edu/academics/colleges/PublicHealth/research/centers/CAIANH/GUMSHOEprogram/biosketches/Pages/Dedra-Buchwald.aspx</ref>

Buchwald was president of the American Association of Chronic Fatigue Syndrome, now called the [[International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]] from 1998 to 2001<ref>http://iacfsme.org/Organization/Committees-of-the-IACFS-ME.aspx</ref> and the chairperson for that organization’s January 2001, [[International IACFS/ME Research and Clinical Conference|Fifth International Conference]] in Bloomington, Minnesota, USA.

Dr. Buchwald's experience with [[ME/CFS]] goes back to the 1980's, where in 1988, Dr. Buchwald established the Chronic Fatigue Clinic at the Harborview Medical Center in Seattle, Waashington. In 1995, Dr Buchwald headed the Seattle Chronic Fatigue Syndrome Cooperative Research Center, a center partially funded by a [[National Institutes of Health]] grant.<ref>http://grantome.com/grant/NIH/U19-AI038429-03</ref><ref>http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=7755</ref>

==Awards==
*2004, Rudy Perpich Senior Lectureship Award, presented to a distinguished CFS/FM scientist, physician or healthcare worker awarded by [[International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]]<ref>http://iacfsme.org/Organization/Former-IACFS-ME-Awardees.aspx</ref>

==Notable studies==
*2018, Longitudinal associations of [[lymphocyte]] subsets with clinical outcomes in [[chronic fatigue syndrome]]<ref name="Mehalick, 2018"/> [https://www.tandfonline.com/doi/full/10.1080/21641846.2018.1426371 (Abstract)]
*2012, The Comorbidity of Self-Reported [[Chronic Fatigue Syndrome]], [[Post-traumatic stress disorder|Posttraumatic Stress Disorder]], and Traumatic Symptoms<ref name="Dansie, 2012"/> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3343192/ (Full Text)]
*2007, Fatigue: case definition and guidelines for collection, analysis, and presentation of immunization safety data<ref>Jones JF, Kohl KS, Ahmadipour N, Bleijenberg G, Buchwald D, Evengard B, Jason LA, Klimas NG, Lloyd A, McCleary K, Oleske JM, White PD; Brighton Collaboration Fatigue Working Group. Fatigue: case definition and guidelines for collection, analysis, and presentation of immunization safety data. Vaccine. 2007 Aug 1;25(31):5685-96.</ref> [https://www.sciencedirect.com/science/article/pii/S0264410X07002654?via%3Dihub (Preview)]
*2007, Body Mass Index and Fatigue Severity in Chronic Fatigue Syndrome<ref>Ellen A. Schur, Carolyn Noonan, Wayne R. Smith, Jack Goldberg & Dedra Buchwald. (2007). Body Mass Index and Fatigue Severity in Chronic Fatigue Syndrome. ''Journal of Chronic Fatigue Syndrome'', Vol. 14, Iss. 1, pp. 69-77</ref> [http://dx.doi.org/10.1300/J092v14n01_07 (Abstract)]
*2007, Prospective Study of Body Mass Index, Weight Change, and Fatigue in Acute Infectious [[Mononucleosis]]<ref>Ellen A. Schur, Carolyn Noonan & Dedra S. Buchwald. (2007). Prospective Study of Body Mass Index, Weight Change, and Fatigue in Acute Infectious Mononucleosis. ''Journal of Chronic Fatigue Syndrome'', Vol. 14, Iss. 3, pp. 27-36</ref> [http://dx.doi.org/10.1300/J092v14n03_03 (Abstract)]
*2006, [[Mortality]] in a cohort of chronically fatigued patients<ref name="Smith, 2006"/> [https://www.ncbi.nlm.nih.gov/pubmed/16893495 (Abstract)]
*2004, [[Post-traumatic stress disorder]] among patients with chronic pain and [[Chronic fatigue (symptom)|chronic fatigue]]<ref name="Roy-Byrne, 2004"/> [https://www.ncbi.nlm.nih.gov/pubmed/14982142 (Abstract)]
*2003, Single-photon emission computerized tomography and [[Cognitive dysfunction|neurocognitive function]] in patients with [[chronic fatigue syndrome]]<ref>Schmaling KB, Lewis DH, Fiedelak JI, Mahurin R, Buchwald DS. (2003). Single-photon emission computerized tomography and neurocognitive function in patients with chronic fatigue syndrome. ''Psychosomatic Medicine'' 2003 Jan-Feb;65(1):129-36. PMID: 12554824</ref> [https://www.ncbi.nlm.nih.gov/pubmed/12554824 (Abstract)]
*2000, Acute infectious [[mononucleosis]]: Characteristics of patients who report failure to recover<ref name="Buchwald, 2000"/> [https://www.researchgate.net/publication/12262921_Acute_infectious_mononucleosis_Characteristics_of_patients_who_report_failure_to_recover (Abstract - full text upon request)]
*2001, A twin study of chronic fatigue<ref name="Buchwald, 2001"/> [https://www.ncbi.nlm.nih.gov/pubmed/11719632 (Abstract)]
*1996, Race and Ethnicity in Patients with [[Chronic Fatigue]]<ref>Dedra Buchwald, Spero M. Manson, Tsilke Pearlman, Jovine Umali & Phalla Kith. (1996). Race and Ethnicity in Patients with Chronic Fatigue. ''Journal of Chronic Fatigue Syndrome,'' Vol. 2, Iss. 1, pp 53-66</ref> [https://www.researchgate.net/publication/240741765_Race_and_Ethnicity_in_Patients_with_Chronic_Fatigue (Abstract - full text upon request)]
*1992, A chronic illness characterized by fatigue, neurologic and immunologic disorders, and active [[Human herpesvirus 6|human herpesvirus type 6]] infection<ref name="Buchwald, 1992"/> [https://www.researchgate.net/publication/21846992_A_Chronic_Illness_Characterized_by_Fatigue_Neurologic_and_Immunologic_Disorders_and_Active_Human_Herpesvirus_Type_6_Infection (Full text)]

==Talks & interviews==

==Online presence==
*[https://www.ncbi.nlm.nih.gov/pubmed/?term=Buchwald%20D%5BAuthor%5D&cauthor=true&cauthor_uid=25905830 PubMed]

==Learn more==
*[http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=7755 "Seattle Doctor, Dedra Buchwald, Performs Unique Twin Research" by John Addington in [[ProHealth]]]
*[http://www.p4nh.org/dedra-buchwald-md/ Partners 4 Native Health, Washington State University Bio page]
*[http://www.nwcphp.org/about/people/dedra-buchwald Northwest Center for Public Health Practice Faculty page]

==See also==

==References==
<references>
<ref name="Buchwald, 1992">
{{Citation
| last1 = Buchwald | first1 = Dedra | authorlink1 = Dedra Buchwald
| last2 = Cheney | first2 = Paul R. | authorlink2 = Paul Cheney
| last3 = Peterson | first3 = Daniel L. | authorlink3 = Daniel Peterson
| last4 = Henry | first4 = Berch | authorlink4 =
| last5 = Wormsley | first5 = Susan B. | authorlink5 =
| last6 = Geiger | first6 = Ann | authorlink6 =
| last7 = Ablashi | first7 = Dharam V. | authorlink7 = Dharam Ablashi
| last8 = Salahuddin | first8 = S. Zaki | authorlink8 =
| last9 = Saxinger | first9 = Carl | authorlink9 =
| last10 = Biddle | first10 = Royce | authorlink10 =
| last11 = Kikinis | first11 = Ron | authorlink11 =
| last12 = Jolesz | first12 = Ferenc A. | authorlink12 =
| last13 = Folks | first13 = Thomas | authorlink13 =
| last14 = Balachandran | first14 = N. | authorlink14 =
| last15 = Peter | first15 = James B. | authorlink15 =
| last16 = Gallo | first16 = Robert C. | authorlink16 =
| last17 = Komaroff | first17 = Anthony L. | authorlink17 = Anthony Komaroff
| title = A chronic illness characterized by fatigue, neurologic and immunologic disorders, and active human herpesvirus type 6 infection
| journal = Annals of Internal Medicine | volume = 116 | issue = 2 | page = 103-113
| date = 1992
| pmid = 1309285
}}
</ref>
<ref name="Buchwald, 2000">
{{Citation
| last1 = Buchwald | first1 = Dedra S | authorlink1 = Dedra Buchwald
| last2 = Rea | first2 = Thomas | authorlink2 =
| last3 = Katon | first3 = Wayne J | authorlink3 =
| last4 = Russo | first4 = Joan E | authorlink4 =
| last5 = Morrow | first5 = Rhoda Ashley | authorlink5 =
| title = Acute infectious mononucleosis: Characteristics of patients who report failure to recover
| journal = The American Journal of Medicine | volume = 109 | issue = 7 | page = 531-7
| date = 2000
| pmid =
| doi = 10.1016/S0002-9343(00)00560-X
}}
</ref>
<ref name="Buchwald, 2001">
{{Citation
| last1 = Buchwald | first1 = D. | authorlink1 = Dedra Buchwald
| last2 = Herrell | first2 = R. | authorlink2 =
| last3 = Ashton | first3 = S. | authorlink3 =
| last4 = Belcourt | first4 = M. | authorlink4 =
| last5 = Schmaling | first5 = K. | authorlink5 =
| last6 = Sullivan | first6 = P. | authorlink6 =
| last7 = Neale | first7 = M. | authorlink7 =
| last8 = Goldberg | first8 = J. | authorlink8 =
| title = A twin study of chronic fatigue.
| journal = Psychosomatic Medicine | volume = 63 | issue = 6 | page = 936-943
| date = 2001
| pmid = 11719632
| doi =
}}
</ref>
<ref name="Dansie, 2012">
{{Citation
| last1 = Dansie | first1 = Elizabeth J. | authorlink1 =
| last2 = Heppner | first2 = Pia | authorlink2 =
| last3 = Furberg | first3 = Helena | authorlink3 =
| last4 = Goldberg | first4 = Jack | authorlink4 =
| last5 = Buchwald | first5 = Dedra | authorlink5 = Dedra Buchwald
| last6 = Afari | first6 = Niloofar | authorlink6 =
| title = The Comorbidity of Self-Reported Chronic Fatigue Syndrome, Posttraumatic Stress Disorder, and Traumatic Symptoms
| journal = Psychosomatics | volume = 53 | issue = 3 | page = 250–257
| date = 2012
| pmid =
| doi = 10.1016/j.psym.2011.08.007
}}
</ref>
<ref name="Mehalick, 2018">
{{Citation
| last1 = Mehalick | first1 = Melissa L. | authorlink1 =
| last2 = Schmaling | first2 = Karen B. | authorlink2 =
| last3 = Sabath | first3 = Daniel E. | authorlink3 =
| last4 = Buchwald | first4 = Dedra S. | authorlink4 = Dedra Buchwald
| title = Longitudinal associations of lymphocyte subsets with clinical outcomes in chronic fatigue syndrome
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 6 | issue = 2 | page = 80-91
| date = 2018
| pmid =
| doi = 10.1080/21641846.2018.1426371
}}
</ref>
<ref name="Roy-Byrne, 2004">
{{Citation
| last1 = Roy-Byrne | first1 = Peter P. | authorlink1 =
| last2 = Noonan | first2 = Carolyn | authorlink2 =
| last3 = Afari | first3 = Niloofar | authorlink3 =
| last4 = Buchwald | first4 = Dedra | authorlink4 = Dedra Buchwald
| last5 = Goldberg | first5 = Jack | authorlink5 =
| title = Post-traumatic stress disorder among patients with chronic pain and chronic fatigue
| journal = Psychological Medicine | volume = 34 | issue = 2 | page = 363-8
| date = 2004
| pmid = 14982142
| doi =
}}
</ref>
<ref name="Smith, 2006">
{{Citation
| last1 = Smith | first1 = WR | authorlink1 =
| last2 = Noonan | first2 = C | authorlink2 =
| last3 = Buchwald | first3 = D | authorlink3 = Dedra Buchwald
| title = Mortality in a cohort of chronically fatigued patients
| journal = Psychological Medicine | volume = 36 | issue = 9 | page = 1301-6
| date = 2006
| pmid = 16893495
| doi = 10.1017/S0033291706007975
}}
</ref>
</references>

[[Category:Researchers]]
[[Category:USA researchers]]
[[Category:Clinicians]]
[[Category:American clinicians]]
[[Category:Washington clinicians]]

Amy Peterson

2018-06-15T03:04:13Z

Jeshyr:/* Illness */ Fixed Chronic fatigue link previously pointing to disambiguation page

[[File:Amy Peterson.png|upright|right|Source:minnesotaconnected.com]]
'''Amy Peterson''' (born 29 November 1971) is an American short track speed skater. She has competed in five consective Olympic games from 1988-2002.

==Illness==
After competing in the 1994 Winter Olympics, Peterson became ill with [[mononucleosis]]. Within a year she was diagnosed with [[chronic fatigue syndrome]] (CFS). She cut back on all her activities, including her part-time job and college studies in an attempt to continue training. She managed to continue, although inconsistently - some days having to cut back on training and others having to retire to bed. After two years of illness, she recovered, and qualified to compete in the 1998 Olympics.<ref>{{citation |last=Montero |first=Roberto Patarca |date=28 Dec 1999 |title=Chronic Fatigue Syndrome: Advances in Epidemiologic, Clinical, and Basic Science Research; What Does the Research Say? |url=https://books.google.co.uk/books?id=s5NBqI0f-gsC&pg=PA14&lpg=PA14&dq=%22amy+peterson%22+%22chronic+fatigue+syndrome%22&source=bl&ots=YjjwD-Qxbv&sig=sIaUVF-cBwPcw9vA8zfHc_g5lfg&hl=en&sa=X&ved=0ahUKEwi0l4yP-JbQAhVhF8AKHfoWAn4Q6AEIQzAH#v=onepage&q=%22amy%20peterson%22%20%22chronic%20fatigue%20syndrome%22&f=false |publisher=CRC Press |page=14-15 |isbn=9780789006974}}</ref>

In 2002, however, Peterson reported that she was still struggling with symptoms of [[CFS]], including [[Chronic fatigue (symptom)|chronic fatigue]], [[headache]]s, and [[brain fog]].<ref>[http://www.prohealth.com/library/showarticle.cfm?libid=8195 ProHealth - Amy Peterson: A PWC (Person with Chronic Fatigue Syndrome) at the Olympics]</ref> Her performance had been in decline since she became ill and in 2005 she failed to qualify in her last bid for the Olympic games.<ref>[http://www.nytimes.com/2005/12/17/sports/othersports/davis-falls-short-in-push-for-the-shorttrack-team.html The New York Times - Davis Falls Short in Push for the Short-Track Team]</ref>

==Learn more==
*[https://en.wikipedia.org/wiki/Amy_Peterson Wikipedia - Amy Peterson]

==References==
<references>

</references>

[[Category:People with ME, CFS, and/or FMS]]
[[Category:Famous people with ME, CFS, and/or FMS]]
[[Category:American famous people with ME, CFS, and/or FMS]]

David Provan

2018-06-15T03:03:38Z

Jeshyr:/* Illness */ Fixed Chronic fatigue link previously pointing to disambiguation page

'''David Provan''' (born 8 May 1956) is a Scottish former footballer. He played for the Kilmarnock and Celtic Football Clubs. He retired in 1987 after he began to suffer from [[myalgic encephalomyelitis]] (ME).

==Illness==
After a bout of what appeared to be [[influenza]] in 1986, Provan never recovered, and was soon diagnosed with [[postviral fatigue syndrome]] and advised by his doctors to rest.<ref name="provananguish" /> His symptoms included [[muscle pain]], [[Chronic fatigue (symptom)|chronic fatigue]], [[depression]], [[post-exertional malaise]], and [[temperature sensitivity]].<ref name="provananguish" /><ref name="TSSprovan" /> Despite several attempts at rehabilitation, he eventually decided in the summer of 1987 to retire from playing football.<ref>{{citation|last=Paul|first=Ian|title=Mixed feelings as Walker joins up and McClair signs off|url=https://news.google.com/newspapers?id=PKw1AAAAIBAJ&sjid=D6YLAAAAIBAJ&pg=5852%2C452086|accessdate=6 November 2016|work=The Glasgow Herald|date=2 July 1987|page=15}}</ref>

He later returned to work in the media as a pundit and co-commentator for Sky Sports. He has also written for the Scottish edition of ''News of the World'', and currently writes for ''The Sun''.<ref>{{citation|last1=Whitwell|first1=Laurie|title=Provan was Sky's commentary choice for City vs Chelsea clash, but why did the former Celtic winger get the biggest game of the season?|url=http://www.dailymail.co.uk/sport/football/article-2551437/David-Provan-Skys-commentary-choice-Manchester-City-vs-Chelsea-clash-did-former-Celtic-winger-biggest-game-season.html|publisher=Mail Online|accessdate=6 November 2016|date=4 February 2014}}</ref> He is still ill with [[ME]], but although he can no longer run or play football, he is now able to go for walks and play golf.<ref name="TSSprovan" />

==Articles and interviews==
*13 Sep 2010, [http://www.thescottishsun.co.uk/scotsol/homepage/news/3135810/Football-legend-Davi-Provan-celebrates-as-boffins-find-ME-virus-link.html ME ruins lives... I’m glad it’s finally being recognised],''The Scottish Sun''

==Learn more==
*[https://en.wikipedia.org/wiki/David_Provan_(footballer,_born_1956) Wikipedia - David Provan]

==References==
<references>

<ref name="provananguish">{{citation|last=Clark|first=Graham|title=Look back in anguish|url=https://news.google.com/newspapers?id=PtxAAAAAIBAJ&sjid=_aYMAAAAIBAJ&pg=6121%2C7496809|accessdate=6 November 2016|work=Evening Times|date=30 December 1986|page=30}}</ref>

<ref name="TSSprovan">{{citation|url=http://www.thescottishsun.co.uk/scotsol/homepage/news/3135810/Football-legend-Davi-Provan-celebrates-as-boffins-find-ME-virus-link.html|newspaper=The Scottish Sun |date=13 September 2010|accessdate=6 November 2016|title=ME ruins lives... I'm glad it's finally being recognised|first=Yvonne|last=Bolouri}}</ref>

</references>
[[Category:People with ME, CFS, and/or FMS]]
[[Category:Famous people with ME, CFS, and/or FMS]]
[[Category:British famous people with ME, CFS, and/or FMS]]

Leila Pahlavi

2018-06-15T03:02:54Z

Jeshyr:/* Illness */ Fixed Chronic fatigue link previously pointing to disambiguation page

'''Princess Leila Pahlavi''' (March 1970 - 10 June 2001) was the youngest daughter of Mohammad Reza Pahlavi, Shah of Iran, and his third wife, Farah Pahlavi. She reportedly lived with [[myalgic encephalomyelitis]] along with [[anorexia nervosa]] and [[depression]].

==Illness==
It is not clear when exactly Pahlavi was diagnosed with [[ME]], although by her late twenties she had begun to complain to her friends of [[headache]]s, [[muscle pain]], [[joint pain]], and [[Chronic fatigue (symptom)|chronic fatigue]].<ref name="guardian" /> She concurrently suffered from [[anorexia nervosa]] and [[depression]].<ref name="people" /> Her body became weakened as a result of her anorexia, bulimia,<ref>{{citation|url=http://www.telegraph.co.uk/news/uknews/1335290/Shahs-daughter-stole-to-fuel-her-drug-habit.html|title=Shah's daughter stole to fuel her drug habit|publisher=Telegraph.co.uk|last=Tweedie|first=Neil|date=2001-07-26|accessdate=2016-11-06}}</ref> severe [[stomachache]]s<ref name="guardian" /> and various [[food intolerances]].<ref name="people" /> Although her death at age 31 was initially attributed to [[myalgic encephalomyelitis]],<ref>''(2001-06-12), [http://articles.latimes.com/2001/jun/12/local/me-9491 Obituaries, Leila Pahlavi; Deposed Shah's Daughter], LA Times, retrived 2016-11-06''</ref> her autopsy revealed that she had overdosed on [[seconal]], a highly addictive drug she was prescribed to treat her chronic [[insomnia]]. Traces of cocaine were also found in her system.<ref name="guardian" />

==Learn more==
*[https://en.wikipedia.org/wiki/Leila_Pahlavi Wikipedia - Leila Pahlavi]

==References==
<references>

<ref name="guardian">{{citation|url=https://www.theguardian.com/theobserver/2001/oct/14/features.magazine47|title= Death of a princess|publisher=theguardian.co.uk|last=Burke|first=Jason|date=2001-10-14|accessdate=2016-11-06}}</ref>

<ref name="people">{{citation|url=http://people.com/archive/burden-of-grief-vol-56-no-3/|title=Burden of Grief|publisher=people.com|last=Hewitt|first=Bill|date=2001-07-16|accessdate=2016-11-06}}</ref>

</references>

[[Category:Famous people with ME, CFS, and/or FMS]]
[[Category:Iranian famous people with ME, CFS, and/or FMS]]

Diabetes

2018-06-15T03:02:04Z

Jeshyr:/* Symptoms */ Fixed Chronic fatigue link previously pointing to disambiguation page

'''Diabetes''' is a disease that involves either the body's inability to produce insulin (Type 1) or the body's unable to utilize it properly (Type 2).

== Types ==
'''Type 1''': Usually diagnosed in children and young adults and at one time referred to as Juvenile Diabetes. The body has stopped producing insulin.<ref>[http://www.diabetes.org/diabetes-basics/type-1/?loc=db-slabnav American Diabetes Association - Type 1]</ref>

'''Type 2''': Is when your body is not using insulin properly; insulin resistance.<ref>[http://www.diabetes.org/diabetes-basics/type-2/?loc=db-slabnav American Diabetes Association - Type 2]</ref>

Both Types may use injectables or pills.<ref>[http://www.diabetes.org/living-with-diabetes/treatment-and-care/medication/insulin/ American Diabetes Association - Insulin & Other Injectables]</ref>

'''Gestational Diabetes''' develops around the 24th week of pregnancy in many women. It does not mean the mother had diabetes prior to conception or that the mother will have diabetes after birth. Following a doctors advice will help mother and baby remain healthy.<ref>[http://www.diabetes.org/diabetes-basics/gestational/?loc=db-slabnav American Diabetes Association - Gestational]</ref>

==Symptoms==
The main symptoms of diabetes include excessive thirst, frequent urination (particularly at night), [[Chronic fatigue (symptom)|chronic fatigue]], [[weight loss]], loss of muscle bulk, genital itching, frequent episodes of [[thrush]], cuts or wounds that heal slowly, and [[blurred vision]].<ref>http://www.nhs.uk/Conditions/Diabetes/Pages/Diabetes.aspx</ref>

== Research ==
*2016, [https://www.ncbi.nlm.nih.gov/pubmed/27573936 Efficacy and Safety of Cannabidiol and Tetrahydrocannabivarin on Glycemic and Lipid Parameters in Patients With Type 2 Diabetes: A Randomized, Double-Blind, Placebo-Controlled, Parallel Group Pilot Study.]<ref name="CBD and THCV improve diabetic parameters, 2016"/>

== References ==
<references>
<ref name="CBD and THCV improve diabetic parameters, 2016">{{Citation|doi = 10.2337/dc16-0650| volume = 39| issue = 10| pages = 1777-86|last1 = Jadoon| first1 = Khalid A.| last2 = Ratcliffe| first2 = Stuart H.| last3 = Barrett| first3 = David A.| last4 = Thomas| first4 = E. Louise| last5 = Stott| first5 = Colin| last6 = Bell| first6 = Jimmy D.| last7 = O’Sullivan| first7 = Saoirse E.| last8 = Tan| first8 = Garry D.| title = Efficacy and Safety of Cannabidiol and Tetrahydrocannabivarin on Glycemic and Lipid Parameters in Patients With Type 2 Diabetes: A Randomized, Double-Blind, Placebo-Controlled, Parallel Group Pilot Study| journal = Diabetes Care: American Diabetes Association| date = 2016-08-29| }}</ref>

</references>

[[Category:Diagnoses]]

Fred Friedberg

2018-06-15T03:01:19Z

Jeshyr:/* Studies and articles */ Fixed Chronic fatigue links previously pointing to disambiguation page

[[File:Fred_Friedberg.png|300px|thumb|right|Source: Stonybrook.edu]]
'''Fred Friedberg''', PhD, is a research associate professor in the Applied Behavioral Medicine Research Institute at Stony Brook University, Stony Brook, New York, USA, and a psychologist in private practice specializing in the treatment of CFS, fibromyalgia, and other chronic pain conditions. He is a provider of the treatment known as eye movement desensitization and reprocessing (EMDR).<ref>http://iacfsme.org/Organization/Leadership-of-the-IACFS-ME/Fred-Friedberg.aspx</ref>

Friedberg is a founder and editor of the peer review journal: [[Fatigue: Biomedicine, Health & Behavior]], the quarterly professional journal of the professional organization, [[International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]].<ref>http://www.stonybrook.edu/faculty-directory/profile/fred-friedberg</ref> He serves as the current President of the Board of Directors of the [[International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]] (IACFSME)<ref>http://iacfsme.org/</ref> and represented the [[IACFSME]] as a non-voting Liaison Representative at the Jan 12 & 13, 2017 [[Chronic Fatigue Syndrome Advisory Committee]] meeting for the [[U.S. Department of Health and Human Services]].

==Education==
*PhD, City University of New York
*AB, State University of New York at Buffalo

==Awards==
*2106, [[IACFSME]] Special Service Award – Dr. Fred Friedberg<ref>http://iacfsme.org/ME-CFS-Primer-Education/NewsLetters/Volume-10,-Issue-1-%E2%80%A2-January-2017.aspx#PresidentsLetter</ref>

==Studies and articles==
*2017, Public Review - [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)]] Common Data Elements (CDE): Fatigue Subgroup Materials by [[David Cella]], PhD (Chair), [[Mary Dimmock]], Fred Friedberg, PhD, [[Jin-Mann Sally Lin]], PhD, [[Luis Nacul]], MD, PhD, and [[Leorey Saligan]], RN, PhD [[https://www.commondataelements.ninds.nih.gov/Doc/MECFS/03_Fatigue_Subgroup_CDE_Draft_Recommendations.pdf (Full Text)]
*2017, Patient change attributions in self-management of severe [[chronic fatigue syndrome]]<ref name="Adamowicz, 2017"/> [http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1278634 (Abstract)]
*2016, Editorial: [[Cognitive behavioral therapy|Cognitive-behavior therapy]]: why is it so vilified in the [[chronic fatigue syndrome]] community?''<ref name="Friedberg, 2016"/> [http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1200884 (Full Text)]
*2016, Efficacy of two delivery modes of behavioral self-management in severe [[chronic fatigue syndrome]]<ref name="FriedbergF, 2016"/> [https://www.tandfonline.com/doi/abs/10.1080/21641846.2016.1205876 (Abstract)]
*2016, Fatigue severity in World Trade Center (9/11) responders: a preliminary study<ref name="Friedberg, Adamowicz, 2016"/> [https://www.tandfonline.com/doi/abs/10.1080/21641846.2016.1169726?journalCode=rftg20 (Abstract)]
*2016, Participant attributions for global change ratings in unexplained [[Chronic fatigue (symptom)|chronic fatigue]] and [[chronic fatigue syndrome]]<ref name="Friedberg, Coronel, 2016"/> [http://journals.sagepub.com/doi/pdf/10.1177/1359105314535458 (Full Text)]
*2015, Editorial: Self-management and ambulatory monitoring in [[chronic fatigue syndrome]]: future directions<ref>Friedberg, F. (2015). Self-management and ambulatory monitoring in chronic fatigue syndrome: future directions. ''Fatigue: Biomedicine, Health & Behavior, 3'' (4), 189-193.</ref> [http://www.tandfonline.com/doi/full/10.1080/21641846.2015.1090801 (Full Text)]
*2015, Prolonged fatigue in Ukraine and the United States: prevalence and risk factors<ref name="Friedberg, 2015"/> [http://www.tandfonline.com/doi/full/10.1080/21641846.2014.993829 (Abstract)]]
*2014, Feasibility of a home-based self-management program for [[Chronic fatigue (symptom)|chronic fatigue]]<ref name="Friedberg, 2014"/>[http://www.tandfonline.com/doi/full/10.1080/21641846.2014.904066 (Abstract)]
*2013, Scientific status of fatigue and pain. Publishing and professional activities: 2002–2011<ref name="Friedberg, Caikauskaite, 2013"/> [http://www.tandfonline.com/doi/full/10.1080/21641846.2012.746201 (Abstract)]
*2013, [[Chronic fatigue (symptom)|chronic fatigue]] Self-Management in Primary Care: A Randomized Trial<ref name="Friedberg, Napoli, 2013"/> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3785003/ (Full Text)]
*2010, Classification of [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] by Types of Fatigue<ref name="Jason, Njoku, 2010"/> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4852700/ (Full Text)]
*2009, Activity Logs as a Measure of Daily Activity Among Patients with [[Chronic Fatigue Syndrome]]<ref name="JasonLA, 2009"/> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3821173/ (Full Text)]
*2009, Examining Types of Fatigue Among Individuals with [[ME/CFS]]<ref name="Jason, Njoku, 2009"/> [http://dsq-sds.org/article/view/938/1113 (Full Text)]
*2007, Non-pharmacologic interventions for [[CFS]]: a randomized trial<ref name="Jason, 2007"/> [https://link.springer.com/article/10.1007/s10880-007-9090-7 (Abstract)]
*1995, Coping Reports of Patients with Long-Term [[Chronic Fatigue Syndrome]]<ref>Coping Reports of Patients with Long-Term Chronic Fatigue Syndrome. Maggie McKenzie, Lucy Dechene, Fred Friedberg, and Robert Fontanetta. Journal of Chronic Fatigue Syndrome Vol. 1, Iss. 3-4, pp 59-67, 1995. http://dx.doi.org/10.1300/J092v01n03_10</ref>
*1999, A Subgroup Analysis of [[Cognitive behavioral therapy|Cognitive-Behavioral Treatment]] Studies<ref>Fred Friedberg. (1999). A Subgroup Analysis of Cognitive-Behavioral Treatment Studies. ''Journal of Chronic Fatigue Syndrome'', Vol. 5, Iss. 3-4, pp. 149-159. http://dx.doi.org/10.1300/J092v05n03_13</ref>
*1999, An Overview of Psychometric Assessment<ref>Fred Friedberg. (1999). A Subgroup Analysis of Cognitive-Behavioral Treatment Studies. ''Journal of Chronic Fatigue Syndrome'', Vol. 5, Iss. 3-4, pp. 161-171. doi:10.1300/J092v05n03_14</ref> [http://dx.doi.org/10.1300/J092v05n03_14 (Abstract)]
*1998, Understanding [[chronic fatigue syndrome]]: An empirical guide to assessment and treatment<ref>Friedberg, F., & Jason, L. A. (1998). Understanding chronic fatigue syndrome: An empirical guide to assessment and treatment. Washington, DC, US: American Psychological Association. http://dx.doi.org/10.1037/10273-000</ref> [http://psycnet.apa.org/record/1998-06061-000 (Abstract)]
*1995, Clinical Assessment of Coping in [[CFS]] Patients<ref>Clinical Assessment of Coping in CFS Patients. Fred Friedberg. Journal of Chronic Fatigue Syndrome Vol. 1, Iss. 3-4, pp 53-58, 1995. doi:10.1300/J092v01n03_09</ref> [http://dx.doi.org/10.1300/J092v01n03_09 (Abstract)]

==Primer for Clinical Practitioners==
*''[[ME/CFS: A Primer For Clinical Practitioners]]'' - Dr. Friedberg chaired the writing committee for the 2014 edition of [http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf ''[[ME/CFS: A Primer For Clinical Practitioners]]''] sponsored by the [[International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]]. Other members of the Primer writing committee members include: [[Rosemary Underhill]], MB, BS; [[Lucinda Bateman]], MD; [[Alison Bested]], MD; [[Todd Davenport]], DPT; [[Kenneth Friedman]], PhD; [[Alan Gurwitt]], MD; [[Leonard Jason]], PhD; [[Charles Lapp]], MD; [[Staci Stevens]], MA; and [[Rosamund Vallings]], MB, BS. [[Anthony Komaroff]], MD wrote the foreword to the Primer.<ref name="IACFSME2014primer"/>

==Books==
*2006, ''Fibromyalgia and Chronic Fatigue Syndrome: Seven Proven Steps to Less Pain and More Energy'', by Fred Friedberg<ref> Friedberg, Fred. (2006). ''Fibromyalgia and chronic fatigue syndrome: seven proven steps to less pain and more energy''. Oakland, California: New Harbinger Publications. ISBN-10: 1572244593 ISBN-13: 978-1572244597</ref>
*2001, ''Clinician's Guide To Controversial Illnesses: Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Chemical Sensitivities'', by Renee R. Taylor, Fred Friedberg, and [[Leonard Jason | Leonard A. Jason]]<ref>http://www.prpress.com/Clinicians-Guide-To-Controversial-Illnesses-Chronic-Fatigue-Syndrome-Fibromyalgia-and-Multiple-Chemical-Sensitivities-_p_51.html</ref>
*1998, ''Understanding Chronic Fatigue Syndrome: An Empirical Guide to Assessment and Treatment'', by Fred Friedberg and [[Leonard Jason]]<ref>Friedberg, Fred and Jason, Leonard. (1998). ''Understanding Chronic Fatigue Syndrome: An Empirical Guide to Assessment and Treatment''. Washington, DC: American Psychological Association. ISBN-13: 978-1557985118
ISBN-10: 1557985111</ref>

==CFSAC testimony==
*June 2012, [http://www.hhs.gov/advcomcfs/meetings/presentations/friedberg_061312.pdf Written Public Testimony on behalf on International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]

==Talks and interviews==
*2016, [http://iacfsme.org/Conferences/2016-Fort-Lauderdale/Agenda/Professional-Agenda.aspx 12th International IACFS/ME Biennial Clinical and Research Conference, Emerging Science and Clinical Care, ''Behavioral Assessment and Treatment of ME/CFS and Fibromyalgia''](Workshop given with [[Leonard Jason]], Ph.D.)
*2011, [https://player.vimeo.com/video/35447883 "What Helps People Cope with ME/CFS and Fibromyalgia"] - Fred Friedberg, Ph.D. at the 10th International [[IACFSME]] Conference, Patient Agenda
*2009, [https://consults.blogs.nytimes.com/2009/10/09/the-mystery-of-chronic-fatigue-syndrome/comment-page-9/#respond "The Mystery of Chronic Fatigue Syndrome" - Fred Friedberg joins the ''The New York Times'' Consults blog to answer readers’ questions about [[chronic fatigue syndrome]]]

==Learn more==
*[http://www.stonybrook.edu/faculty-directory/profile/fred-friedberg Fred Friedberg bio page at Stony Brook University]
*23 Jun 2016, [https://www.sciencedaily.com/releases/2016/06/160623184238.htm ''Getting to the heart of chronic fatigue syndrome''] Fred Friedberg was awarded a $1.5 million grant from the [[National Institutes of Health]] to research if "determine if heart rate fluctuations in combination with certain daily activity patterns can be used to predict or prevent relapse in people with CFS." The study data will be gathered from wearable mobile heart devices, participants' symptoms and activity diaries, and phone interviews from a psychiatric nurse.

==See also==
*[[International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis]]

==References==
<references>
<ref name="Adamowicz, 2017">
{{Citation
| last1 = Adamowicz | first1 = J.L. | authorlink1 = Jenna Adamowicz
| last2 = Caikauskaite | first2 = I. | authorlink2 =
| last3 = Friedberg | first3 = F. | authorlink3 = Fred Friedberg
| last4 = Seva | first4 = V. | authorlink4 =
| title = Patient change attributions in self-management of severe chronic fatigue syndrome
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 5 | issue = 1 | page =
| date = 2017
| pmid =
| doi = 10.1080/21641846.2017.1278634
}}
</ref>
<ref name="Friedberg, 2014">
{{Citation
| last1 = Friedberg | first1 = Fred | authorlink1 = Fred Friedberg
| last2 = Ngan | first2 = Man Chi | authorlink2 =
| last3 = Chang | first3 = Jeremy | authorlink3 =
| title = Feasibility of a home-based self-management program for chronic fatigue
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 2 | issue = 2 | page = 110-118
| date = 2014
| pmid =
| doi = 10.1080/21641846.2014.904066
}}
</ref>
<ref name="Friedberg, 2015">
{{Citation
| last1 = Friedberg | first1 = F. | authorlink1 = Fred Friedberg
| last2 = Tintle | first2 = N. | authorlink2 =
| last3 = Clark | first3 = J. | authorlink3 =
| last4 = Bromet | first4 = E. | authorlink4 =
| title = Prolonged fatigue in Ukraine and the United States: prevalence and risk factors
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 3 | issue = 1 | page = 33-46
| date = 2015
| pmid =
| doi = 10.1080/21641846.2014.993829
}}
</ref>
<ref name="Friedberg, 2016">
{{Citation
| last1 = Friedberg | first1 = Fred | authorlink1 = Fred Friedberg
| title = Cognitive-behavior therapy: why is it so vilified in the chronic fatigue syndrome community?
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 4 | issue = 3 | page = 127-131
| date = 2016
| pmid =
| doi = 10.1080/21641846.2016.1200884
}}
</ref>
<ref name="Friedberg, Adamowicz, 2016">
{{Citation
| last1 = Friedberg | first1 = F. | authorlink1 = Fred Friedberg
| last2 = Adamowicz | first2 = J.L. | authorlink2 = Jenna Adamowicz
| last3 = Caikauskaite | first3 = I. | authorlink3 =
| last4 = Napoli | first4 = A. | authorlink4 =
| last5 = Shapira | first5 = 0. | authorlink5 =
| last6 = Hobbs | first6 = M. | authorlink6 =
| last7 = Bromet | first7 = E. | authorlink7 =
| last8 = Kotov | first8 = R. | authorlink8 =
| last9 = Gonzalez | first9 = A. | authorlink9 =
| last10 = Clouston | first10 = S. | authorlink10 =
| last11 = Luft | first11 = B. | authorlink11 =
| title = Fatigue severity in World Trade Center (9/11) responders: a preliminary study
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 4 | issue = 2 | page = 70-79
| date = 2016
| pmid =
| doi = 10.1080/21641846.2016.1169726
}}
</ref>
<ref name="Friedberg, Caikauskaite, 2013">
{{Citation
| last1 = Friedberg | first1 = F. | authorlink1 = Fred Friedberg
| last2 = Caikauskaite | first2 = I. | authorlink2 =
| last3 = Adamowicz | first3 = J. | authorlink3 = Jenna Adamowicz
| last4 = Bivona | first4 = T. J. | authorlink4 =
| last5 = Njoku | first5 = G. | authorlink5 = Mary Gloria Njoku
| title = Scientific status of fatigue and pain. Publishing and professional activities: 2002–2011
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 1 | issue = 1-2 | page = 4-11
| date = 2013
| pmid =
| doi = 10.1080/21641846.2012.746201
}}
</ref>
<ref name="Friedberg, Coronel, 2016">
{{Citation
| last1 = Friedberg | first1 = Fred | authorlink1 = Fred Friedberg
| last2 = Coronel | first2 = Janna | authorlink2 =
| last3 = Seva | first3 = Viktoria | authorlink3 =
| last4 = Adamowicz | first4 = Jenna | authorlink4 = Jenna Adamowicz
| last5 = Napoli | first5 = Anthony | authorlink5 =
| title = Participant attributions for global change ratings in unexplained chronic fatigue and chronic fatigue syndrome
| journal = Journal of health psychology | volume = 21 | issue = 5 | page = 690–698
| date = 2016
| pmid =
| doi = 10.1177/1359105314535458
| url = http://journals.sagepub.com/doi/pdf/10.1177/1359105314535458
}}
</ref>
<ref name="FriedbergF, 2016">
{{Citation
| last1 = Friedberg | first1 = F. | authorlink1 = Fred Friedberg
| last2 = Adamowicz | first2 = J. | authorlink2 = Jenna Adamowicz
| last3 = Caikauskaite | first3 = I. | authorlink3 =
| last4 = Seva | first4 = V. | authorlink4 =
| last5 = Napoli | first5 = A. | authorlink5 =
| title = Efficacy of two delivery modes of behavioral self-management in severe chronic fatigue syndrome
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 4 | issue = 3 | page = 158-174
| date = 2016
| pmid =
| doi = 10.1080/21641846.2016.1205876
}}
</ref>
<ref name="Friedberg, Napoli, 2013">
{{Citation
| last1 = Friedberg | first1 = Fred | authorlink1 = Fred Friedberg
| last2 = Napoli | first2 = Anthony | authorlink2 =
| last3 = Coronel | first3 = Janna | authorlink3 =
| last4 = Adamowicz | first4 = Jenna | authorlink4 = Jenna Adamowicz
| last5 = Seva | first5 = Viktoria | authorlink5 =
| last6 = Caikauskaite | first6 = Indre | authorlink6 =
| last7 = Ngan | first7 = Man Chi | authorlink7 =
| last8 = Chang | first8 = Jeremy | authorlink8 =
| last9 = Meng | first9 = Hongdao | authorlink9 =
| title = Chronic Fatigue Self- Management in Primary Care: A Randomized Trial
| journal = Psychosomatic Medicine | volume = 75 | issue = 7 | page = 650–657
| date = 2013
| pmid =
| doi = 10.1097/PSY.0b013e31829dbed4
| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3785003/
}}
</ref>
<ref name="IACFSME2014primer">{{citation
| 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 = http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf
}}</ref>
<ref name="Jason, 2007">
{{Citation
| last1 = Jason | first1 = LA | authorlink1 = Leonard Jason
| last2 = Torres-Harding | first2 = S | authorlink2 = Susan Torres-Harding
| last3 = Friedberg | first3 = F | authorlink3 = Fred Friedberg
| last4 = Corradi | first4 = K | authorlink4 =
| last5 = Njoku | first5 = MG | authorlink5 = Mary Gloria Njoku
| last6 = Donalek | first6 = J | authorlink6 =
| last7 = Reynolds | first7 = N | authorlink7 =
| last8 = Brown | first8 = M | authorlink8 = Molly Brown
| last9 = Weitner | first9 = BB | authorlink9 =
| last10 = Rademaker | first10 = A | authorlink10 =
| last11 = Papernik | first11 = M | authorlink11 = Morris Papernik
| title = Non-pharmacologic interventions for CFS: a randomized trial
| journal = Journal of Clinical Psychology in Medical Settings | volume = 14 | issue = 4| page = 275–296
| date = 2007
| pmid =
| doi = 10.1007/s10880-007-9090-7
}}
</ref>
<ref name="JasonLA, 2009">
{{Citation
| last1 = Jason | first1 = L.A. | authorlink1 = Leonard Jason
| last2 = Timpo | first2 = P. | authorlink2 =
| last3 = Porter | first3 = N. | authorlink3 =
| last4 = Herrington | first4 = J. | authorlink4 =
| last5 = Brown | first5 = M. | authorlink5 = Molly Brown
| last6 = Torres-Harding | first6 = S. | authorlink6 = Susan Torres-Harding
| last7 = Friedberg | first7 = F. | authorlink7 = Fred Friedberg
| title = Activity logs as a measure of daily activity among patients with CFS.
| journal = Journal of Mental Health | volume = 18 | issue = 6 | page = 549-556
| date = 2009
| pmid = 24222721
| doi = 10.3109/09638230903191249
}}
</ref>
<ref name="Jason, Njoku, 2009">
{{Citation
| last1 = Jason | first1 = Leonard | authorlink1 = Leonard Jason
| last2 = Jessen | first2 = Tricia | authorlink2 =
| last3 = Porter | first3 = Nicole | authorlink3 =
| last4 = Boulton | first4 = Aaron | authorlink4 =
| last5 = Njoku | first5 = Mary Gloria | authorlink5 = Mary Gloria Njoku
| last6 = Friedberg | first6 = Fred | authorlink6 = Fred Friedberg
| title = Examining Types of Fatigue Among Individuals with ME/CFS
| journal = Disability Studies Quarterly | volume = 29 | issue = 3 | page =
| date = 2009
| pmid =
| doi = 10.18061/dsq.v29i3.938
}}
</ref>
<ref name="Jason, Njoku, 2010">
{{Citation
| last1 = Jason | first1 = Leonard | authorlink1 = Leonard Jason
| last2 = Boulton | first2 = Aaron | authorlink2 =
| last3 = Porter | first3 = Nicole | authorlink3 =
| last4 = Jessen | first4 = Tricia | authorlink4 =
| last5 = Njoku | first5 = Mary Gloria | authorlink5 = Mary Gloria Njoku
| last6 = Friedberg | first6 = Fred | authorlink6 = Fred Friedberg
| title = Classification of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Types of Fatigue
| journal = Behavior Medicine | volume = 6 | issue = 1 | page = 24–31.
| date = 2010
| pmid =
| doi = 10.1080/08964280903521370
}}
</ref>
</references>
[[Category:Authors]] [[Category:Researchers]] [[Category:USA researchers]][[Category:Psychological paradigm critics]][[Category:Journal editors]][[Category:CFSAC members]]

Brigitte Huber

2018-06-15T02:59:25Z

Jeshyr:/* Studies */ Removed link to Chronic fatigue disambiguation page

[[File:Brigitte Huber.png|thumb|right|Source:Tufts University]]
'''Brigitte Huber''', PhD, is a Professor of Integrative Physiology & Pathobiology, at the Sackler School of Graduate Biomedical Sciences, Tufts University, Boston, Massachusetts.<ref>http://sackler.tufts.edu/Faculty-and-Research/Faculty-Profiles/Brigitte-Huber-Profile</ref> She has studied the presence of retrovirus HERV K-18 as a potential biomarker for those who develop [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]] ([[ME/CFS]]) after a case of infectious [[mononucleosis]].<ref>http://www.investinme.eu/IIMEC5.shtml</ref> HERV-K18 is one of many endogenous human retroviruses in the normal human genome. It can be activated in a variety of ways and affect the outcome of [[Epstein-Barr virus]] infection and influence autoimmune disease.<ref>http://sackler.tufts.edu/Faculty-and-Research/Faculty-Research-Pages/Brigitte-Huber</ref>Dr. Huber's research has shown that there are more HERV K-18 alleles in post-[[mononucleosis]] [[ME/CFS]] patients than in controls.<ref>http://www.investinme.eu/IIMEC5.shtml</ref>

In 2011, Dr. Huber and her lab associates were one of the groups who were unable to duplicate Dr. [[Judy Mikovits]]'s finding of the presence of [[XMRV]] in [[ME/CFS]] patients.<ref>Oakes B1, Qiu X, Levine S, Hackett J Jr, Huber BT. (2011). Failure to Detect XMRV-Specific Antibodies in the Plasma of CFS Patients Using Highly Sensitive Chemiluminescence Immunoassays. ''Advances in Virology, 2011'':854540. doi: 10.1155/2011/854540. Epub 2011 Jul 27. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/22312356</ref>In 2013, she and her lab associates were unable to show reactivation of [[human herpesvirus 6]] ([[HHV-6]]) or [[human herpesvirus 7]] ([[HHV-7]]) in [[chronic fatigue syndrome]].<ref>Oakes B, Hoagland-Henefield M, Komaroff AL, Erickson JL, Huber BT. (2013). Human endogenous retrovirus-K18 superantigen expression and human herpesvirus-6 and human herpesvirus-7 viral loads in chronic fatigue patients. ''Clinical Infectious Disease,56'' (10):1394-400. doi: 10.1093/cid/cit086. Epub 2013 Feb 13. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/23408682</ref>

==Education==
*BA, Biology, University of Zurich
*MSc, Pharmacology, University of Basel
*PhD, Immunogenetics, University of London
*Postdoctoral Training, Harvard Medical School

==Talks & interviews==
*2010, [http://www.investinme.eu/IIMEC5.shtml#agenda Speaker at the 5th [[Invest in ME International ME Conference]] on ''Presence of Retrovirus as a Biomarker for ME/CFS''] [http://www.investinme.eu/IIMEC5.shtml#dvd DVD available]

==Studies==
*2013, Human endogenous retrovirus-K18 superantigen expression and human [[Human herpesvirus 6|herpesvirus-6]] and [[Human herpesvirus 7|human herpesvirus-7]] viral loads in chronic fatigue patients<ref>Oakes B, Hoagland-Henefield M, Komaroff AL, Erickson JL, Huber BT. (2013). Human endogenous retrovirus-K18 superantigen expression and human herpesvirus-6 and human herpesvirus-7 viral loads in chronic fatigue patients. ''Clinical Infectious Disease, 56'' (10):1394-400. doi: 10.1093/cid/cit086</ref> [https://academic.oup.com/cid/article/56/10/1394/406518 (Full Text)]
*2011, Failure to Detect [[XMRV]]-Specific Antibodies in the Plasma of CFS Patients Using Highly Sensitive Chemiluminescence Immunoassays.<ref>Oakes B, Qiu X, Levine S, Hackett J Jr, Huber BT. (2011). Failure to Detect XMRV-Specific Antibodies in the Plasma of CFS Patients Using Highly Sensitive Chemiluminescence Immunoassays. ''Advances in Virology,2011'':854540. doi: 10.1155/2011/854540</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3265317/ (Full text)]
*2001, [[Epstein-Barr virus]] transactivates the human endogenous retrovirus HERV-K18 that encodes a superantigen.<ref>Sutkowski N1, Conrad B, Thorley-Lawson DA, Huber BT. (2001). Epstein-Barr virus transactivates the human endogenous retrovirus HERV-K18 that encodes a superantigen. ''Immunity, 15'' (4):579-89</ref> [https://www.cell.com/immunity/fulltext/S1074-7613(01)00210-2?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1074761301002102%3Fshowall%3Dtrue (Full Text)]

==References==

[[Category:Researchers]]
[[Category:USA researchers]]

Nigeria

2018-06-15T02:58:26Z

Jeshyr:/* Demographics */ Fixed Chronic fatigue link previously pointing to disambiguation page

[[File:Nigeria_flag.svg.png|320px|right|thumb|'''Nigeria''']]

-brief description-

==Demographics==
A study in 2006 by Njoku, Jason, and Torres-Harding found a 0.68% CFS adult prevalence rate in Nigeria.<ref>http://www.ncbi.nlm.nih.gov/pubmed/17439996</ref> The higher prevalence has been potentially attributed to the presence of numerous fatiguing illnesses such as malaria and typhoid in Africa as well as the presence of malnutrition, poverty, and inadequate healthcare resources. These factors all increase the risk of individuals developing idiopathic [[Chronic fatigue (symptom)|chronic fatigue]] or [[chronic fatigue syndrome]].<ref>[http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.493.7218&rep=rep1&type=pdf CFS: A Review of Epidemiology and Natural History Studies (pdf)]</ref>

==Medical guidelines==

==National health department==

==Government health insurance==

==Private health insurance==

==Access to care==

==Social security and disability benefits==

==Patient charities==

==Research==

===Research groups===

===Researchers===

==Clinicians==

==Notable patients==

==Learn more==

==See also==
*[[Blood donation]]
*[[Outbreaks]]

==References==
<references>

</references>
[[Category:Countries]] [[Category:Africa]] [[Category:Nigeria]]

Primer for patients

2018-06-15T02:57:51Z

Jeshyr:/* Core and additional symptoms */ Capitalisation

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.

You will need to educate yourself about your disease and discuss your very real symptoms with your doctor. ME/CFS is well known but outside of relatively few studies has not been approached as a biological illness. 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]] and [[Cognitive behavioral therapy]] are used in the UK inappropriately for treating ME/CFS.

A 2015 study by the [[Institute of Medicine]] recognized the ME/CFS disease burden to be up 2.5 million Americans and "the direct and indirect economic costs of ME/CFS to society are estimated to be approximately over $17 to $24 billion annually."<ref>[https://www.nap.edu/read/19012/chapter/1 Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness - National Academies of Medicine of Sciences Engineering Medicine (Pg. 2)]</ref><ref>[https://docs.google.com/spreadsheets/d/14PSpEi2hFcjH62gY1_GCM-WVE_7QWNYkKTT6oRBA5Ms/edit ME Prevalence by State and Congr District]</ref> There are an estimated 17 million people with ME/CFS worldwide.<ref>[http://www.meresearch.org.uk/news/how-many-people-have-mecfs/ How many people have ME/CFS? - ME Research UK]</ref> A 2008 [[Centers for Disease Control & Prevention]] (CDC) study which used a [[CFS]] definition to diagnose, [[Fukuda criteria]], noted, "Of the one to four million Americans who have CFS, less than 20% have been diagnosed."<ref>[https://www.cdc.gov/cfs/diagnosis/index.html Chronic Fatigue Syndrome - Diagnosis - Centers for Disease Control and Prevention]</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.

== Disease onset and course of illness==
The disease [[ME/CFS]] is diagnosed when a person does not recover from a flu-like illness, [[EBV]], [[Mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and meets one or more 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><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."<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> Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity 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>

==== Pediatric ME/CFS ====
Children are also afflicted with ME/CFS.<ref>[http://www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-links Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association]</ref> ''See'': [[Pediatric]].

==== Prognosis ====
Unfortunately, prognosis for ME/CFS is generally poor. ''See'': [[Prognosis]]

==== Female to male ratio ====
Like many auto-immune and 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 is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>

== Symptoms ==
=== Hallmark symptom ===
*[[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) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. 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>[http://solvecfs.org/unraveling-post-exertional-malaise/ Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm Post-Exertional Malaise - About.com Health - FMS/ME/CFS]</ref>

:Regarding PEM the [[CFIDS Association of America]] states: "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>

=== Core and additional symptoms ===
The [[Institute of Medicine report]] (USA) listed these core symptoms in the [http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide]:
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[Chronic fatigue (symptom)|Chronic fatigue]]
*[[Post-exertional malaise]] (PEM) This is a Hallmark Symptom of CFS, ME and ME/CFS
*[[Unrefreshing sleep]]
*[[Cognitive dysfunction]]
*[[Orthostatic intolerance]]
*[[Chronic pain]]
*[[Immune system]] Impairment
*Infection
</div>

==== Expanded lists of symptoms ====
*[http://solvecfs.org/what-is-mecfs/ What are the symptoms of ME/CFS?] By: [[Solve ME/CFS]]

*[https://www.verywell.com/chronic-fatigue-syndrome-symptoms-716110 Chronic Fatigue Syndrome Symptoms - The Monster List!] By: [[About.com Health FMS/ME/CFS]]

*[[Postural orthostatic tachycardia syndrome]] (POTS) is a form of Orthostatic Intolerance.

== Tests to discuss with your doctor ==
*[https://en.wikipedia.org/wiki/Sleep_study Sleep study] for [https://en.wikipedia.org/wiki/Sleep_apnea Sleep apnea], [[Restless leg syndrome]], [[Sleep disturbance]].
*[[Tilt table test]] for [[Orthostatic intolerance]], [[POTS]].
*[[Natural killer cell]]

== Graded exercise therapy & Cognitive behavioral therapy ==
[[Graded exercise therapy]] (GET) and [[Cognitive behavioral therapy]] (CBT) are usually employed in the 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 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 injure an ME/CFS patient further.

*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].
*[[Doctor Speedy]] was also seriously injured by GET.
*[[Jennifer Brea]] walked home from her Neurologist's office and became wheelchair bound.

== Recommended viewing ==

==== Documentary ====
*[[Forgotten Plague]] is a US documentary about [[Ryan Prior]], a journalist with ME/CFS, 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)

*[[Unrest]] is a US documentary film that will air on PBS's Independent Lens in 2018. [[Jennifer Brea]], a person with [[ME]], directs. (2017)

==== Mini-doc & Short film ====
*[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] is a [https://www.youtube.com/watch?v=9_HwOUiImvw Palo Alto Online, US Mini-Doc on Youtube]. It documents 3 people with [[CFS]] suffering from the same disease in varying degrees of illness. (2015)

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

====Shorts ====
* #[[MillionsMissing]] provides a <5 min. short UK Video [http://millionsmissing.org/learn/?utm_content=bufferf61ee&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 'What Is M.E.?'] Discusses the disease impact on several people with [[ME]]. (2016)

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

==== Talks and interviews ====
*[http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose Video: What happens when you have a disease doctors can't diagnose] Jennifer Brea gives a [https://en.wikipedia.org/wiki/TED_(conference) TED Talk] to explain her psychiatric misdiagnosis of [https://en.wikipedia.org/wiki/Conversion_disorder Conversion disorder], her correct diagnosis of [[Myalgic encephalomyelitis]], the disease impact on her life and how women are more often to receive a psychiatric misdiagnosis for a biologic disease. (2016)

*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====
:'''USA'''

:[[Centers for Disease Control]] (CDC)
:*[https://www.cdc.gov/cfs/pediatric/factsheets.html Factsheets - Pediatric] Factsheets for Healthcare Professionals, Parents, and Education Professionals. (2014)

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

:[[Institute of Medicine]] (IOM)
:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts] From the [[Institute of Medicine report]]. (2015)

:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/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]

:'''USA'''

:[[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)

:'''USA'''
:[[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]]
:*[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/?utm_content=bufferc2125&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 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

== 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:'' [http://me-pedia.org/wiki/Category:Patient_groups_by_country Patient groups by country]

:[[Science for ME]], [[Phoenix Rising]], 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'': [http://me-pedia.org/wiki/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]

==Learn more==
*[[Blood donation]]
*[[Definitions of ME and CFS]] Diagnostic clinical and research criteria for ME, CFS and ME/CFS
*[[Diagnostic biomarker]]
*[[Notable studies]]
*[[Outbreaks]]

== See also ==
*[[Primer for family, friends and care providers]]

==Other resources==
*[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.
*[https://voat.co/v/CFS/ VOAT: CFS] A pinboard site with research, articles, videos and more!
*[[About.com Health FMS/ME/CFS]] Well written articles with simply stated facts about ME/CFS and Fibromyalgia.
*[[Phoenix Rising]] Citizen Scientists debate the latest ME/CFS science.
*[[MDJunction]] Support for patients and caregivers from other patients and caregivers.

== References ==

[[Category:Primers]]

Primer for patients

2018-06-15T02:57:19Z

Jeshyr:/* Core and additional symptoms */ Fixed Chronic fatigue link previously pointing to disambiguation page

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.

You will need to educate yourself about your disease and discuss your very real symptoms with your doctor. ME/CFS is well known but outside of relatively few studies has not been approached as a biological illness. 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]] and [[Cognitive behavioral therapy]] are used in the UK inappropriately for treating ME/CFS.

A 2015 study by the [[Institute of Medicine]] recognized the ME/CFS disease burden to be up 2.5 million Americans and "the direct and indirect economic costs of ME/CFS to society are estimated to be approximately over $17 to $24 billion annually."<ref>[https://www.nap.edu/read/19012/chapter/1 Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness - National Academies of Medicine of Sciences Engineering Medicine (Pg. 2)]</ref><ref>[https://docs.google.com/spreadsheets/d/14PSpEi2hFcjH62gY1_GCM-WVE_7QWNYkKTT6oRBA5Ms/edit ME Prevalence by State and Congr District]</ref> There are an estimated 17 million people with ME/CFS worldwide.<ref>[http://www.meresearch.org.uk/news/how-many-people-have-mecfs/ How many people have ME/CFS? - ME Research UK]</ref> A 2008 [[Centers for Disease Control & Prevention]] (CDC) study which used a [[CFS]] definition to diagnose, [[Fukuda criteria]], noted, "Of the one to four million Americans who have CFS, less than 20% have been diagnosed."<ref>[https://www.cdc.gov/cfs/diagnosis/index.html Chronic Fatigue Syndrome - Diagnosis - Centers for Disease Control and Prevention]</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.

== Disease onset and course of illness==
The disease [[ME/CFS]] is diagnosed when a person does not recover from a flu-like illness, [[EBV]], [[Mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and meets one or more 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><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."<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> Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity 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>

==== Pediatric ME/CFS ====
Children are also afflicted with ME/CFS.<ref>[http://www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-links Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association]</ref> ''See'': [[Pediatric]].

==== Prognosis ====
Unfortunately, prognosis for ME/CFS is generally poor. ''See'': [[Prognosis]]

==== Female to male ratio ====
Like many auto-immune and 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 is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>

== Symptoms ==
=== Hallmark symptom ===
*[[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) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. 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>[http://solvecfs.org/unraveling-post-exertional-malaise/ Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm Post-Exertional Malaise - About.com Health - FMS/ME/CFS]</ref>

:Regarding PEM the [[CFIDS Association of America]] states: "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>

=== Core and additional symptoms ===
The [[Institute of Medicine report]] (USA) listed these core symptoms in the [http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide]:
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[Chronic fatigue (symptom)|chronic fatigue]]
*[[Post-exertional malaise]] (PEM) This is a Hallmark Symptom of CFS, ME and ME/CFS
*[[Unrefreshing sleep]]
*[[Cognitive dysfunction]]
*[[Orthostatic intolerance]]
*[[Chronic pain]]
*[[Immune system]] Impairment
*Infection
</div>

==== Expanded lists of symptoms ====
*[http://solvecfs.org/what-is-mecfs/ What are the symptoms of ME/CFS?] By: [[Solve ME/CFS]]

*[https://www.verywell.com/chronic-fatigue-syndrome-symptoms-716110 Chronic Fatigue Syndrome Symptoms - The Monster List!] By: [[About.com Health FMS/ME/CFS]]

*[[Postural orthostatic tachycardia syndrome]] (POTS) is a form of Orthostatic Intolerance.

== Tests to discuss with your doctor ==
*[https://en.wikipedia.org/wiki/Sleep_study Sleep study] for [https://en.wikipedia.org/wiki/Sleep_apnea Sleep apnea], [[Restless leg syndrome]], [[Sleep disturbance]].
*[[Tilt table test]] for [[Orthostatic intolerance]], [[POTS]].
*[[Natural killer cell]]

== Graded exercise therapy & Cognitive behavioral therapy ==
[[Graded exercise therapy]] (GET) and [[Cognitive behavioral therapy]] (CBT) are usually employed in the 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 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 injure an ME/CFS patient further.

*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].
*[[Doctor Speedy]] was also seriously injured by GET.
*[[Jennifer Brea]] walked home from her Neurologist's office and became wheelchair bound.

== Recommended viewing ==

==== Documentary ====
*[[Forgotten Plague]] is a US documentary about [[Ryan Prior]], a journalist with ME/CFS, 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)

*[[Unrest]] is a US documentary film that will air on PBS's Independent Lens in 2018. [[Jennifer Brea]], a person with [[ME]], directs. (2017)

==== Mini-doc & Short film ====
*[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] is a [https://www.youtube.com/watch?v=9_HwOUiImvw Palo Alto Online, US Mini-Doc on Youtube]. It documents 3 people with [[CFS]] suffering from the same disease in varying degrees of illness. (2015)

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

====Shorts ====
* #[[MillionsMissing]] provides a <5 min. short UK Video [http://millionsmissing.org/learn/?utm_content=bufferf61ee&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 'What Is M.E.?'] Discusses the disease impact on several people with [[ME]]. (2016)

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

==== Talks and interviews ====
*[http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose Video: What happens when you have a disease doctors can't diagnose] Jennifer Brea gives a [https://en.wikipedia.org/wiki/TED_(conference) TED Talk] to explain her psychiatric misdiagnosis of [https://en.wikipedia.org/wiki/Conversion_disorder Conversion disorder], her correct diagnosis of [[Myalgic encephalomyelitis]], the disease impact on her life and how women are more often to receive a psychiatric misdiagnosis for a biologic disease. (2016)

*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====
:'''USA'''

:[[Centers for Disease Control]] (CDC)
:*[https://www.cdc.gov/cfs/pediatric/factsheets.html Factsheets - Pediatric] Factsheets for Healthcare Professionals, Parents, and Education Professionals. (2014)

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

:[[Institute of Medicine]] (IOM)
:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts] From the [[Institute of Medicine report]]. (2015)

:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/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]

:'''USA'''

:[[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)

:'''USA'''
:[[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]]
:*[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/?utm_content=bufferc2125&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 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

== 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:'' [http://me-pedia.org/wiki/Category:Patient_groups_by_country Patient groups by country]

:[[Science for ME]], [[Phoenix Rising]], 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'': [http://me-pedia.org/wiki/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]

==Learn more==
*[[Blood donation]]
*[[Definitions of ME and CFS]] Diagnostic clinical and research criteria for ME, CFS and ME/CFS
*[[Diagnostic biomarker]]
*[[Notable studies]]
*[[Outbreaks]]

== See also ==
*[[Primer for family, friends and care providers]]

==Other resources==
*[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.
*[https://voat.co/v/CFS/ VOAT: CFS] A pinboard site with research, articles, videos and more!
*[[About.com Health FMS/ME/CFS]] Well written articles with simply stated facts about ME/CFS and Fibromyalgia.
*[[Phoenix Rising]] Citizen Scientists debate the latest ME/CFS science.
*[[MDJunction]] Support for patients and caregivers from other patients and caregivers.

== References ==

[[Category:Primers]]

Primer for the public

2018-06-15T02:56:35Z

Jeshyr:/* Disease names and acronyms around the world */ Fixed Chronic fatigue link previously pointing to disambiguation page

'''Primer for the public''' offers a broad audience, an abundance of detailed information on [[Myalgic Encephalomyelitis]] (ME) and [[Chronic Fatigue Syndrome]] (CFS) are complex, chronic, and poorly understood medical conditions. ME was first categorized as a neurological disease by the World Health Organization in 1969. CFS was first formally defined by the United States [[Centers for Disease Control]] in 1988 as a framework for researching unexplained chronic fatigue associated with a mononucleosis-like syndrome. There remains a lack of consensus among members of the medical and research communities regarding the equivalence of ME and CFS. Some believe that CFS is intended to describe the same disease entity as ME, while others believe that they are distinct conditions but with overlapping symptom profiles. In deference to this lack of consensus, the combined term '[[ME/CFS]]' is often used.

== Disease onset and course of illness==
The disease [[ME/CFS]] is diagnosed when a person does not recover from a flu-like illness, [[EBV]], [[Mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and meets one or more 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><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."<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> Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity 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>

=== Female to male ratio ===
Like many auto-immune and 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 is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>

=== Pediatric ME/CFS ===
Children are also afflicted with ME/CFS.<ref>[http://www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-links Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association]</ref> ''See'': [[Pediatric]].

=== Prognosis ===
Prognosis for ME/CFS is generally poor. ''See'': [[Prognosis]]

== 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]] and a few CFS/ME. ''See:'' [http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS].

The symptom [[Chronic fatigue (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&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 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 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, USA experienced an outbreak during 1984-1985. The [[Centers for Disease Control]] (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> [[Postviral fatigue syndrome]] (PVFS) is the next frontier of the psychological paradigm keeping control of an organic disease and have been laying groundwork to do so.<ref>[http://forums.phoenixrising.me/index.php?threads/elle-anecdotes-used-to-promote-osullivan-complain-shes-being-trolled.46176/ Mind Games - ELLE Magazine September 2016 - Phoenix Rising - '''ELLE''' Anecdotes used to promote O'Sullivan, complain she's being trolled]</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"/>

==Disease impact ==

"An estimated 17-20 million people suffer from ME/CFS worldwide, and 25% of them have a very severe form of it."<ref>[https://raisingawarenessforcfs.wordpress.com/2011/01/31/raising-awareness-for-cfsmecfids/ Raising Awareness for ME/CFS - Jan. 2011]</ref><ref>[http://mecfsdocumentary.com/sample-page/ ME/CFS Documentary - About ME/CFS]</ref> The 25% of patients who are severely ill are either bed-bound, wheelchair bound, or are housebound or nearly so.<ref>[http://www.25megroup.org/home.html The 25% M.E. Group Website Support Group for Severe M.E. Sufferers]</ref> The [[ME/CFS Severely Ill, Big Data Study]] is focused on this 25%.

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>[http://www.highteaforme.com/what-is-mecfs/ Why ME? - High Tea for ME]</ref> Children and adolescents are also diagnosed.<ref>[http://www.cdc.gov/cfs/pediatric/index.html Pediatric CFS - CDC]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-home-page Pediatric ME/CFS - MASS CFIDS/ME FMS]</ref>

=== U.S. ===
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>[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness]</ref> Some CFS patients can work with [https://www.masscfids.org/job-accommodations Job Accommodations] but 1/3 to 1/2 become unemployed and 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>

==== Female to male ratio ====
Like many auto-immune and 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 is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>

[[Jennifer Brea]] gives a [https://en.wikipedia.org/wiki/Women's_Media_Center WMC] Live radio interview addressing F/M auto-immune ratio and the disease [https://secure-hwcdn.libsyn.com/p/1/c/3/1c390d4707a99658/WMCLive_Episode159.mp3?c_id=11198959&expiration=1458320878&hwt=eb06639b1ec5ae7b7fd4e0fd83cc70f9 at 5:00].

== Symptoms ==

=== Hallmark symptom ===
*[[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) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. 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>[http://solvecfs.org/unraveling-post-exertional-malaise/ Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm Post-Exertional Malaise - About.com Health - FMS/ME/CFS]</ref>

:Regarding PEM the [[CFIDS Association of America]] states: "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>

=== Core and additional symptoms (see IOM Clinicians Guide below) ===
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[Orthostatic intolerance]]
*[[POTS]]
*[[Cognitive dysfunction]]
*[[Unrefreshing sleep]]
*[[Chronic fatigue]]
*[[Chronic pain]]
*Immune Impairment
*Infection
</div>

====US Government guides on symptoms====
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*The [[Institute of Medicine report]] - IOM [http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide]
*[http://www.cdc.gov/cfs/symptoms/index.html CDC - CFS Symptoms]
</div>

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

=== Other symptoms, comorbids ===
*Neurologic impairments - ME: [[ICC]]<ref>[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427890/ Myalgic encephalomyelitis: International Consensus Criteria - Wiley - Journal of International Medicine]</ref>
*[[Fibromyalgia]], [[Irritable bowel syndrome]], [[Temporomandibular joint disorder]] (TMJ) and [[Multiple Chemical Sensitivity]]<ref>[http://solvecfs.org/what-is-mecfs/ What is ME/CFS? - Solve ME/CFS Initiative]</ref>

==== Expanded lists of symptoms ====
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">

*[http://chronicfatigue.about.com/od/whatischronicfatigue/a/cfs_symptoms.htm Chronic Fatigue Syndrome Symptoms - The Monster List!]

*[http://solvecfs.org/what-is-mecfs/ What are the symptoms of ME/CFS?]

</div>

==Prognosis==
=== Three stages ===
Dr. [[David Bell]], who serves on the Scientific Advisory Board for the [[Open Medicine Foundation]], discusses three stages of the disease in the article [http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS].

*At the '''''first stage''''', there is an acute illness where [[EBV]] is likely responsible for most adolescents but there is no standard viral illness. The initial virus likely fades away in a week and the patient feels better and is ready for regular activities. He adds "in a person with a gradual onset of symptoms, this stage would be different."
*'''''Second stage''''' "occurs when the symptoms do not disappear but persist for months to years in roughly the same severity. There is little variation day-to-day, and this time is very confusing. Many medical providers are contacted, most giving conflicting opinions varying from psychological disorders to possible exotic infections, but the tests come back normal."
*In the '''''third stage''''' patients will have mild, gradual improvements over years and patients adjust their lives to the symptoms. Patients may look well and recovery is thought to have taken place. Some patients will make a full recovery in 3-4 years but "recovery and improvement are completely different."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By David S. Bell, MD]</ref>

=== Poor long-term prognosis ===
Dr. Bell has great concern for patients 35 years old who had become ill as teens and has been studying a group that first became ill in 1985. "Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties." It is now understood that persons with ME/CFS do not have a good long-term prognosis and it is actually poor as "full recovery from untreated CFS is rare."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By David S. Bell, MD]</ref>

'''Few Return to Pre-illness State of Functioning'''

In about 40% of people with ME/CFS, the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.<ref name="CairnsR2005prog"/><ref name="JoyceJ1997prog"/><ref name="Johnson20130706"/>

== Drugs, treatments and therapies ==
There are no approved drugs, appropriate treatments or reliable therapies for ME/CFS.

===Controversy===
Psychiatry has taken an inappropriate lead and treatment path for a biological disease. In the UK, [[GET]] and [[CBT]] are employed by ME Clinics. [[Exercise]] exacerbates symptoms and can further injure patients.<ref>[http://slightlyalive.blogspot.com/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS - Slightly Alive - By: Mary Schweitzer]</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 are utilized usually with poor and even damaging results.<ref>[http://drmyhill.co.uk/wiki/CFS_or_depression_-_what_are_the_differences CFS or depression - what are the differences - Dr. Myhill.co.uk]</ref>

Treating a biological disease as a mental illness is cost effective. The drugs are inexpensive 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 timeframe.<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>

Charlatans claim they can cure CFS ("There is no cure"<ref>[http://www.cdc.gov/cfs/management/index.html Management of CFS - CDC]</ref>) when in reality they may be able to treat [[Chronic Fatigue]] (CF). Some people misdiagnosed and "recovered" from CFS most likely had CF or a bad year or two with [https://en.wikipedia.org/wiki/Infectious_mononucleosis Mononucleosis] along with a bout or two of [https://en.wikipedia.org/wiki/Influenza Influenza]. These individuals were experiencing a proper immune response whereas ME/CFS is an ongoing improper immune response.

=== 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 [[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> [[MEAction]] reports on this ongoing process.

== Different diagnostic criteria used worldwide ==
=== Currently used ===
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[Fukuda criteria]] (Sometimes referred to as CDC Criteria)
*[[Canadian Consensus Criteria]] (CCC)
*[[Oxford criteria]]
*[[International Consensus Criteria]] (ICC)
*[[Reeves criteria]] (Sometimes called [[Empirical definition]])
*[[SEID]] (Recommended but not adopted.)
</div>

=== Currently not in use ===

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

=== Current ===
*[[NIH Post-Infectious ME/CFS Study]] is outlined by Shannon Firth; Editor Dr. [https://en.wikipedia.org/wiki/Sanjay_Gupta Sanjay Gupta] in the article "NIH Gears Up for First-Ever Chronic Fatigue Study".<ref>[http://www.medpagetoday.com/Neurology/GeneralNeurology/56772 NIH Gears Up for First-Ever Chronic Fatigue Study - MedPage Today]</ref> An Open Letter from [[Mary Schweitzer]] to Dr. Gupta about the study.<ref>[http://slightlyalive.blogspot.com/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS From Mary Schweitzer]</ref>
*Dr. [[Derek Enlander]] of Mount Sinai, NY has announced a study to prove or disprove exercise as a treatment for ME/CFS patients. (Begin at 17:30 of the video.)<ref>[https://www.youtube.com/watch?v=tVU8V4OWbVY&feature=youtu.be Dr. Derek Enlander - ME/CFS Alert Ep. 77 17:30 for Exercise Study]</ref>

=== Completed ===
*[[Metabolic features of chronic fatigue syndrome]] by the [[Open Medicine Foundation]] show blood chemical signature. [[ME/CFS Severely Ill, Big Data Study]]
*[[Cytokine]] research by [[Mady Hornig]] and [[Ian Lipkin]] show Immune Signatures. Columbia University Mailman School of Public Health (With video)<ref>[https://www.mailman.columbia.edu/public-health-now/news/scientists-discover-robust-evidence-chronic-fatigue-syndrome-biological Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is a Biological Illness - Columbia University Mailman School of Public Health]</ref><ref>[http://simmaronresearch.com/2016/03/are-chronic-fatigue-syndrome-mecfs-and-fibromyalgia-immune-exhaustion-disorders/ Are Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Immune Exhaustion Disorders? Simmaron Research - By: Cort Johnson]</ref>
*[[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]] by [[Stanford ME/CFS Initiative]]
*Illness progression in chronic fatigue syndrome: a shifting immune baseline<ref name="IllnessProgressionBMC2016"/>
*[[National Centre for Neuroimmunology and Emerging Diseases]] claim to have a biomarker screening test.
*[[Institute of Medicine report]]

== Recommended viewing ==

==== Documentary ====
*[[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)

*[[Unrest]] is a US documentary film that will air on PBS's Independent Lens in 2018. [[Jennifer Brea]], a person with [[ME]], directs. (2017)

==== Mini-doc & Short film ====
*[[Invisible Illness - Stories of Chronic Fatigue Syndrome]] is a [https://www.youtube.com/watch?v=9_HwOUiImvw Palo Alto Online, US Mini-Doc on Youtube]. It documents 3 people with [[CFS]] suffering from the same disease in varying degrees of illness. (2015)

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

====Shorts ====
* #[[MillionsMissing]] provides a <5 min. short UK Video [http://millionsmissing.org/learn/?utm_content=bufferf61ee&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 'What Is M.E.?'] Discusses the disease impact on several people with [[ME]]. (2016)

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

==== Talks and interviews ====
*[http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose What happens when you have a disease doctors can't diagnose] Jennifer Brea gives a [https://en.wikipedia.org/wiki/TED_(conference) TED Talk] to explain her psychiatric misdiagnosis of [https://en.wikipedia.org/wiki/Conversion_disorder Conversion disorder], her correct diagnosis of [[Myalgic encephalomyelitis]], the disease impact on her life and how women are more often to receive a psychiatric misdiagnosis for a biologic disease. (2016)

*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====
:'''USA'''

:[[Centers for Disease Control]] (CDC)
:*[https://www.cdc.gov/cfs/pediatric/factsheets.html Factsheets - Pediatric] Factsheets for Healthcare Professionals, Parents, and Education Professionals. (2014)

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

:[[Institute of Medicine]] (IOM)
:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts] From the [[Institute of Medicine report]]. (2015)

:*[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/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]

:'''USA'''

:[[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)

:'''USA'''
:[[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&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 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

==Disputed therapies==
*[[PACE trial]] is a highly controversial study based on [[GET]] and [[CBT]] as therapies for ME/CFS patients. Patients, caretakers, ME/CFS charities and organizations as well as many clinicians, researchers, and others oppose this study due to [[outcome switching]] and other issues. The therapies are not just useless, they are injuring patients. (See Heading: "Drugs, treatments and therapies" and [http://me-pedia.org/wiki/Category:Open_letters Open Letters].) [[David Tuller]] has written and spoken at length about the PACE and [[FINE trial]].

*[[Lightning Process]] A "therapy" misused for the disease ME/CFS.

==History==
*[[Osler's Web]] is a book on the early history of CFS.
*[[Thirty Years of Disdain]] picks up on the ME/CFS history where Osler's Web leaves off.
*[[List of news articles on ME and CFS]]
*[[Sophia Mirza]]'s life ended due to CFS.
*[http://me-pedia.org/wiki/Disabled_in_Tory_Britain#PACE_trial UK agencies involved in the implementation of the PACE trial. Disabled in Tory Britain - PACE trial]

== Learn more ==
<div style="column-count:4;-moz-column-count:4;-webkit-column-count:4">
*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis] (2018) Guide for Caretakers
*[[List of outbreaks]]
*[[Brain imaging]]
*[[Natural killer cell]]
*[[Vagus nerve infection hypothesis]]
*[[Ampligen]]
*[[Rituximab]]
*[[Patient mental health]]
*[[Karina Hansen]]
*[[Neuroinflammation]]
*"[[In the Expectation of Recovery]]" by [[Centre for Welfare Reform]]
*[[List of acronyms]]
</div>

== See also ==
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[Blood donation]]
*[[Primer for family, friends and care providers]]
*[[Primer for patients]]
*[[Fibromyalgia]]
*[[25 Percent ME Group]]
*[[Postviral fatigue syndrome]]
</div>

== Further reading ==

===Blogs and letters===
*ME/CFS is NOT Depression. Lack of energy, not desire.<ref>[http://chronicfatigue.about.com/b/2011/12/17/chronic-fatigue-syndrome-vs-depression-one-doctors-view.htm Chronic Fatigue Syndrome vs. Depression: One Doctor's View Lack of Energy or Lack of Desire? About.com Health FMS/ME/CFS]</ref><ref>[http://www.sleepydust.net/CHRONIC-FATIGUE-SYNDROME-AND-DEPRESSION.html Are ME/CFS & Depression The Same Thing? - Sleepy Dust]</ref><ref>[http://drmyhill.co.uk/wiki/CFS_or_depression_-_what_are_the_differences CFS or depression - what are the differences - Dr. Myhill.co.uk]</ref>
*[http://me-pedia.org/wiki/Category:Open_letters Open Letters]: Patients, doctors, researchers, advocates, caretakers and other interested parties have been writing!

== Other resources ==
*[https://voat.co/v/CFS/new VOAT: CFS]
*[[About.com Health FMS/ME/CFS]]

== References ==
<references>

<ref name="IllnessProgressionBMC2016">{{Citation
| last1 = Russell | first1 = Lindsey | authorlink1 = Linday Russell
| last2 = Broderick | first2 = Gordon | authorlink2 = Gordon Broderick
| last3 = Taylor | first3 = Renee | authorlink3 = Renee Taylor
| last4 = Fernandes | first4 = Henrique | authorlink4 = Henrique Fernandes
| last5 = Harvey | first5 = Jeanna | authorlink5 = Jeanna Harvey
| last6 = Barnes | first6 = Zachary | authorlink6 = Zachary Barnes
| last7 = Smylie | first7 = AnneLiese | authorlink7 = AnneLiese Smylie
| last8 = Collado | first8 = Fanny | authorlink8 = Fanny Collado
| last9 = Balbin | first9 = Elizabeth | authorlink9 = Elizabeth Balbin
| last10 = Katz | first10 = Ben | authorlink10 = Ben Katz
| last11 = Klimas | first11 = Nancy | authorlink11 = Nancy Klimas
| last12 = Fletcher | first12 = Mary Ann | authorlink12 = Mary Ann Fletcher
| display-authors =
| title = Illness progression in chronic fatigue syndrome: a shifting immune baseline
| journal = BMC Immunology | date = 10 Mar 2016 | volume = 17(1) | page = 3
| pmid = 26965484 | doi = 10.1186/s12865-016-0142-3
}}</ref>

<ref name="IOM2015MECFS">{{citation
| last1 = Institute of Medicine (USA)
| last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| display-authors =
| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
| date = 10 February 2015
| url = http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
}}</ref>



<ref name="CairnsR2005prog">{{citation
| last1 = Cairns | first1 = R | authorlink1 = Ruth Cairns
| last2 = Hotopf | first2 = M | authorlink2 = Matthew Hotopf
| title = A systematic review describing the prognosis of chronic fatigue syndrome
| journal = Occupational Medicine | volume = 2005;55 | page = 20–31
| doi = 10.1093/occmed/kqi013
| url = http://occmed.oxfordjournals.org/content/55/1/20.full.pdf
}}</ref>

<ref name="Johnson20130706">{{citation
| last1 = Johnson | first1 = Cort | authorlink1 = Cort Johnson
| title = ME/CFS Prognosis
| journal = Health Rising
| date = 6 July 2013
| url = http://www.cortjohnson.org/about-chronic-fatigue-syndrome-mecfs/prognosis/
}}</ref>

<ref name="JoyceJ1997prog">{{citation
| last1 = Joyce | first1 = J | authorlink1 = J Joyce
| last2 = Hotopf | first2 = M | authorlink2 = Matthew Hotopf
| last3 = Wessely | first3 = Simon | authorlink3 = Simon Wessely
| title = The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review
| journal = QJM | volume = 90 | issue = 3
| date = 1 March 1997
| pmid = 9093600 | doi = 10.1093/qjmed/90.3.223
| url = http://qjmed.oxfordjournals.org/content/90/3/223.long
}}</ref>
</references>

[[Category:Primers]]

Trauma

2018-06-15T02:55:27Z

Jeshyr:Fixed Chronic fatigue link previously pointing to disambiguation page

==Childhood trauma==

A study suggesting a role for childhood trauma in [[ME/CFS]] used the broad [[empirical definition]] of ME/CFS, which resulted in a biased sample with overrepresentation of individuals with [[depression]] and [[post traumatic stress disorder]] (PTSD) (Heim et al., 2009). The unusually high proportion of subjects with serious psychiatric problems likely explains the study finding of an association between ME/CFS and adverse childhood experiences.<ref name="IOM2015">Institute of Medicine (US), [http://www.ncbi.nlm.nih.gov/pubmed/25695122 Beyond Myalgic Encephalomyelitis / Chronic Fatigue Syndrome - Redefining an Illness], ''National Academies Press (US)'', Feb 2015.</ref>
No other studies have suggested a higher rate of childhood trauma in those with confirmed ME/CFS as opposed to nonspecific [[Chronic fatigue (symptom)|chronic fatigue]]. In a study of 22 Norwegian adolescents with ME/CFS, no participant reported prior sexual abuse (Gjone and Wyller, 2009).<ref name="IOM2015" />

==Notable studies==

==Media coverage==

==Learn more==

==See also==

==References==
<references>

</references>
[[Category:Triggers and risk factors]]

Primer for journalists

2018-06-15T02:54:46Z

Jeshyr:Fixed Chronic fatigue link previously pointing to disambiguation page

[[Myalgic Encephalomyelitis]] (M.E.), [[Chronic Fatigue Syndrome]] (CFS) and [[Chronic fatigue (symptom)|chronic fatigue]] (CF) are widely misunderstood. In this primer, 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 [[CFS]] is a debilitating lifelong illness and it is not the same as CF which is a symptom.

==What do we know?==
[[ME]] is a debilitating illness that has been recognized as a neurological condition by the World Health Organisation (WHO) since 1969.<ref name="WHOclass">reference needed for WHO class since 1969</ref>

It is a systemic neuroimmune condition characterized by [[post-exertional malaise]] (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 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.

In many parts of the world, it is commonly called [[Chronic Fatigue Syndrome]].

[[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).<ref>reference needed for NIH funding levels</ref> The [[Institute of Medicine]], a special advisory committee of the [[U.S. Department of Health and Human Services]] ([[HHS]]) (ref: 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==
The disease [[ME/CFS]] is diagnosed when a person does not recover from a flu-like illness, [[EBV]], [[mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and meets one or more 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><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."<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> Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity 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>

=== Pediatric ME/CFS ===
Children are also afflicted with ME/CFS.<ref>[http://www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-links Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association]</ref> ''See'': [[Pediatric]].

=== Prognosis ===
Prognosis for [[ME/CFS]] is generally poor. ''See'': [[Prognosis]]

=== Female to male ratio ===
Like many auto-immune and 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 is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> and some [[ME/CFS]] patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>

==ME vs CFS vs CF==

The name [[Myalgic Encephalomyelitis]] ([[ME]]) was coined following an [[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]] ([[CDC]]) following an [[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 condition, entirely separate conditions, 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 condition, 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 conditions are the same or different, and there is unlikely to be a resolution until firm [[biomarkers]] have been identified. As such, many patients and researchers use the term [[ME/CFS]].<ref name="Klimas20140621video" /> ''See:'' [http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS].

The name Chronic Fatigue Syndrome is itself controversial, as many consider it stigmatizing. In February 2016, Dr [[Anthony Komaroff]], who was part of the [[Centers for Disease Control]] ([[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 (eg: anemia, Hepatitis, [[multiple sclerosis]], hypothyroidism, [[depression]], [[ME/CFS]]). "Chronic fatigue" is not a condition in its own right and it is incorrect and misleading to refer to [[ME/CFS]] as "chronic fatigue". Whilst fatigue is a component of [[ME/CFS]], many consider [[post-exertional malaise]] ([[PEM]]) to be the cardinal feature of ME/CFS.<ref>reference needed CCC</ref><ref name="IOM2015MECFS" />

==It is not tiredness==

=== Symptoms ===
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. There are many symptoms which people with [[ME/CFS]] experience, though those listed below are arguably the most common:

*[[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) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. 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>[http://solvecfs.org/unraveling-post-exertional-malaise/ Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm Post-Exertional Malaise - About.com Health - FMS/ME/CFS]</ref>

:Regarding [[PEM]] the [[CFIDS Association of America]] states: "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>

*[[Chronic fatigue]]
*Chronic pain
*[[Cognitive dysfunction]]
*[[Unrefreshing sleep]], and [[sleep dysfunction]]
*[[Orthostatic intolerance]], such as [[Postural orthostatic tachycardia syndrome]] ([[POTS]]) or [[Neurally mediated hypotension]] ([[NMH]])
*[[Neuroinflammation]]
*Neurological disturbances such as muscle spasms, numbness/tingling, sensory overload

===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 condition. As a result, [[ME/CFS]] symptoms are often considered to be medically unexplained, and therefore psychological in origin. Whilst it is true that the condition is poorly understood, many biological abnormalities have been found in a range of different body systems that have been found in [[ME/CFS]], particularly in the [[central nervous system]], autonomic nervous system, immune system and energy metabolism.<ref name="IOM2015MECFS" /> Unfortunately, none have yet proved to be specific or practical enough to [[ME/CFS]] as to be useful as a [[biomarker]] of the condition, and many were identified in small studies, which are in need of replication. Whilst there have been abnormalities which have been identified to be associated with the condition, it cannot yet be determined whether these are a cause or consequence of the condition.

*[[Neuroinflammation]] Japanese Neuroinflammation study<ref name="NakatomiY2014" />, Younger's Leptin study <ref name="JohnsonC20150126younger" />
*Reduced brain white matter study by [[Stanford ME/CFS Initiative]]<ref name="StanfordMed20141028" /> New York Times Article with brain images.<ref name="TullerD20141124brain" /> Three major brain abnormalities.<ref>[http://privatehealthcarereports.com/chronic-fatigue-patients-suffer-3-major-brain-abnormalities-findings-may-lead-to-clearer-diagnosis/ Chronic Fatigue Patients Suffer 3 Major Brain Abnormalities; Findings May Lead To Clearer Diagnosis. - Private Health Care]</ref>
*Immune findings: [[Mady Hornig]] & [[Ian Lipkin]]<ref name="Hornig20150201immune" />
*[[Metabolic features of chronic fatigue syndrome]]
*Autonomic nervous system:
*[[Natural killer cell]] findings
*Gut dysbiosis
*[[Rituximab]]

===Epidemiology===

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

*Level of disability (Norwegian study HRQoL)<ref name="Hvidberg2015" /> (suggests quality of life is LOWER than for many cancers, heart diseases, brain stroke, diabetes I & II, rheumatoid arthritis, chronic renal failure, sclerosis, schizophrenia, COPH, etc)

===Causes & triggers===

*Outbreaks - see [[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?)<ref name="Hickie2006"/>
*Non-viral triggers - trauma, chemical

===Persistence hypotheses===

*Immune findings

===Prognosis===

==== Three stages ====
Dr. [[David Bell]], who serves on the Scientific Advisory Board for the [[Open Medicine Foundation]], discusses three stages of the disease in the article [http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS].

*At the '''''first stage''''', there is an acute illness where [[EBV]] is likely responsible for most adolescents but there is no standard viral illness. The initial virus likely fades away in a week and the patient feels better and is ready for regular activities. He adds "in a person with a gradual onset of symptoms, this stage would be different."
*'''''Second stage''''' "occurs when the symptoms do not disappear but persist for months to years in roughly the same severity. There is little variation day-to-day, and this time is very confusing. Many medical providers are contacted, most giving conflicting opinions varying from psychological disorders to possible exotic infections, but the tests come back normal."
*In the '''''third stage''''' patients will have mild, gradual improvements over years and patients adjust their lives to the symptoms. Patients may look well and recovery is thought to have taken place. Some patients will make a full recovery in 3-4 years but "recovery and improvement are completely different."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By: David S. Bell, MD]</ref>

==== Poor long-term prognosis ====
Dr. [[David Bell]] has great concern for patients 35 years old who had become ill as teens and has been studying a group that first became ill in 1985. "Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties." It is now understood that persons with [[ME/CFS]] do not have a good long-term prognosis and it is actually poor as "full recovery from untreated [[CFS]] is rare."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By: David S. Bell, MD]</ref>

'''Few Return to Pre-illness State of Functioning'''

In about 40% of people with [[ME/CFS]], the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.<ref name="CairnsR2005prog" /><ref name="JoyceJ1997prog" /><ref name="Johnson20130706" />

=== Severely ill ===
It is estimated that 25% of [[ME/CFS]] patients are severely ill and are housebound or bedbound.<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>

===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" /> 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.

Two treatments that have garnered much attention are [[Ampligen]] and [[Rituximab]]. Many people have reported enormous benefit from [[Ampligen]], some doctors have been prescribing it for [[ME/CFS]] for decades. Attempts to obtain [[FDA]] approval for [[Ampligen]] in the US have failed so, despite its usefulness, it is unavailable to many. [[Rituximab]], a lymphoma drug, showed promising but not consistent results in initial trials in [[Norway]], and there are groups crowdsourcing funding for further trials in other countries. [[Jarred Younger]] announced in March 2016 that he will be undertaking a trial of [[Low dose naltrexone]] ([[LDN]]) in [[ME/CFS]].<ref>http://www.psy.uab.edu/younger/research.html</ref>

====Exercise as treatment====

Previously, two common treatment recommendations for [[ME/CFS]] were [[Graded Exercise Therapy]] ([[GET]]) and [[Cognitive behavioral therapy]] ([[CBT]]). These treatments are based on the hypothesis that the condition might have begun with a viral infection but has been perpetuated by [[deconditioning]] from lack of activity, and fear and avoidance of activity. GET & CBT are aimed at addressing these hypothesized causes by challenging the 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 may actually be 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.<ref name="Phoenix20160222Norway2012" />

The [[PACE trial]], published in 2011, is the largest [[Graded Exercise Therapy]] trial ever conducted. It has received much publicity as a result of its claims of recovery rates, 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>http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext</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"/>, psychologist Dr. [[Carolyn Wilshire]]<ref name="Wilshire C, et al, 2017"/> 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" /> 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, neurological, autonomic and 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" /><ref>reference needed - Workwell Foundation studies</ref><ref>reference needed - the Lights epigenetic changes post-exercise</ref>

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 push to increase activity

===Severely ill patients===
Considerable variation exists in the severity of the condition. 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 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" /> 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]].

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 instances of deaths which have been attributed to the condition (see [[Sophia Mirza]], [[Merryn Crofts]]).

===Patients & psychiatry/psychology===

*Objections & scope
*Mind-body dualism
*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]
*[[Patient mental health]]

===Stigmatization===

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

===Accusations of harassment===

*Tiny %
*No arrests or convictions
*Poor treatment of patients not mentioned. [[Ean Proctor]] and "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>

==Expert opinions==

===Quotes from ME/CFS experts and patients===

*[http://thoughtsaboutme.com/quotes/ Thoughts About ME - List of Quotes]
*[[Individual Quotes]]

===Doctors for expert opinions===
[[Daniel Peterson]], [[Nancy Klimas]], [[Ronald Tompkins]], [[Ron Davis]], [[Lucinda Bateman]], [[Alan Pocinki]], [[Susan Levine]], [[Jose Montoya]], [[Anthony Komaroff]], [[Benjamin Natelson]], [[Lily Chu]], [[Peter Rowe]] For others: see [[Category:Clinicians]]

===Researchers===
[[Leonard Jason]], [[Mady Hornig]], [[Ian Lipkin]], [[Maureen Hanson]], [[Betsy Keller]], [[Jarred Younger]], [[Neil McGregor]], [[Gunnar Gottschalk]], [[Suzanne Vernon]], [[Staci Stevens]] For others: see [[Category:Researchers]]

===Patients===
====U.S.====

*[[Jennifer Brea]]
*[[Ryan Prior]]
*[[Julie Rehmeyer]]

====U.K.====
*[[Jessica Taylor-Bearman]]

====Australia====

====Ireland====

*[[Tom Kindlon]]

===Patient groups & charities===

'''[[:Category:Patient groups|Patient groups]]'''
<div style="column-count:3;-moz-column-count:3;-webkit-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:Swedish patient groups|Swedish patient groups]]
</div>

==History==

*[[Osler's Web]] is a book on the early history of CFS.
*[[Thirty Years of Disdain]] picks up on the ME/CFS history where Osler's Web leaves off.
*[[List of news articles on ME and CFS]]
*[[Sophia Mirza]]'s life ended due to CFS.
*[http://me-pedia.org/wiki/Disabled_in_Tory_Britain#PACE_trial UK agencies involved in the implementation of the PACE trial. Disabled in Tory Britain - PACE trial]

==Other tips==

*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). [[CFS]], [[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.

==Learn more==

*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis] (2018) Guide for Caretakers
*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?] By the [[Open Medicine Foundation]]
*[http://youtu.be/c2vIQ92wU9Y ME/CFS Diagnosis and Name with Dr Nancy Klimas (video)]
*[[Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education]] (CDC Video, 2016)
*[[Institute of Medicine report]]
*[[Unrest]] (2017)
*[[Jessica Taylor-Bearman]]
*[[Forgotten Plague]] (2015) (see [https://www.youtube.com/watch?v=VsQcmKT3zSo trailer])
*[[Notable studies]]

==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)]]
*[[Postviral fatigue syndrome]] (PVFS)

==References==
<references>
<ref name="CairnsR2005prog">{{citation
| last1 = Cairns | first1 = R | authorlink1 = Ruth Cairns
| last2 = Hotopf | first2 = M | authorlink2 = Matthew Hotopf
| title = A systematic review describing the prognosis of chronic fatigue syndrome
| journal = Occupational Medicine | volume = 2005;55 | page = 20–31
| doi = 10.1093/occmed/kqi013
| url = http://occmed.oxfordjournals.org/content/55/1/20.full.pdf
}}</ref>
<ref name="JohnsonC20150126younger">{{citation
| last1 = Johnson | first1 = Cort | authorlink1 = Cort Johnson
| title = Getting “Younger”: Leptin, Chronic Fatigue Syndrome and Fibromyalgia]
| date = 26 Jan 2015
| url = http://www.cortjohnson.org/blog/2015/01/26/getting-younger-leptin-chronic-fatigue-fibromyalgia/
}}</ref>
<ref name="Geraghty, 2017">
{{Citation
| 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>
<ref name="Hickie2006">{{citation
| 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 = 2006; 333:575
| date = 14 Sep 2006
| pmid = 16950834 | doi = 10.1136/bmj.38933.585764.AE
| url = http://www.bmj.com/content/333/7568/575.long
}}</ref>
<ref name="Hornig20150201immune">{{citation
| 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 = Vol 1, No. 1
| date = 1 February 2015
| url = http://advances.sciencemag.org/content/1/1/e1400121
}}</ref>
<ref name="Hvidberg2015">{{citation
| 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 = 6 Jul 2015
| doi = 10.1371/journal.pone.0132421
| url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421
}}</ref>
<ref name="IACFSME2014primer">{{citation
| 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 = http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf
}}</ref>
<ref name="ICC2011criteria">{{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 = Baumgarten-Austrheim | first12= B | authorlink12= Barbara Baumgarten-Austrheim
| last13 = Bell | first13= DS | authorlink13= David Bell
| last14 = Carlo-Stella | first14= N | authorlink14= Nicoletta Carlo-Stella
| last15 = Chia | first15= J | authorlink15= John Chia
| last16 = Darragh | first16= A | authorlink16= Austin Darragh
| last17 = Jo | first17= D | authorlink17= Daehyun Jo
| last18 = Lewis | first18= DP | authorlink18= Donald Lewis
| last19 = Light | first19= AR | authorlink19= Alan Light
| last20 = Marshall-Gradisnik | first20= S | authorlink20= Sonya Marshall-Gradisnik
| last21 = Mena | first21= I | authorlink21= Ismael Mena
| last22 = Mikovits | first22= JA | authorlink22= Judy Mikovits
| last23 = Miwa | first23= K | authorlink23= Kunihisa Miwa
| last24 = Murovska | first24= M | authorlink24= Modra Murovska
| last25 = Pall | first25= ML | authorlink25= Martin Pall
| last26 = Stevens | first26= SR | authorlink26= Staci Stevens
| title = Myalgic encephalomyelitis: International Consensus Criteria
| journal = Journal of Internal Medicine | volume = 270 | issue = 4 | page = 327–338
| date = 22 August 2011
| pmid = 21777306 | doi = 10.1111/j.1365-2796.2011.02428.x
| url = http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
}}</ref>
<ref name="IOM2015MECFS">{{citation
| last1 = Institute of Medicine (USA)
| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
| publisher = The National Academies Press | location = Washington, DC, USA
| date = 10 February 2015
| isbn = 978-0-309-31689-7
| url = http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
}}</ref>
<ref name="Jason, Katz, 2017">
{{Citation
| 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="Johnson20130706">{{citation
| last1 = Johnson | first1 = Cort | authorlink1 = Cort Johnson
| title = ME/CFS Prognosis
| journal = Health Rising
| date = 6 July 2013
| url = http://www.cortjohnson.org/about-chronic-fatigue-syndrome-mecfs/prognosis/
}}</ref>
<ref name="JoyceJ1997prog">{{citation
| last1 = Joyce | first1 = J | authorlink1 = J Joyce
| last2 = Hotopf | first2 = M | authorlink2 = Matthew Hotopf
| last3 = Wessely | first3 = Simon | authorlink3 = Simon Wessely
| title = The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review
| journal = QJM | volume = 90 | issue = 3
| date = 1 March 1997
| pmid = 9093600 | doi = 10.1093/qjmed/90.3.223
| url = http://qjmed.oxfordjournals.org/content/90/3/223.long
}}</ref>
<ref name="Klimas20140621video">{{citation
| last1 = Klimas | first1 = Nancy | authorlink1 = Nancy Klimas
| title = ME/CFS Diagnosis and Name with Dr. Nancy Klimas (video)
| date = 21 Jun 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 = 17 Feb 2016
| url = http://youtu.be/hRdn4A2SGic
}}</ref>
<ref name="MEACTIONpacepetition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Petition: Misleading Claims Should Be Retracted
| journal = #MEAction
| date = Oct 2015
| url = http://my.meaction.net/petitions/pace-trial-needs-review-now
}}</ref>
<ref name="MEACTION20160313openletr">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = 24 organisations in 14 countries tell QMUL: Release the PACE data
| date = 13 Mar 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">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 29 May 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">{{citation
| 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 = 2014 Jun;55(6) | page = 945-50
| date = 24 Mar 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 (USA)
| title = NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
| date = 9 Dec 2014
| url = https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
}}</ref>
<ref name="openletrLANCET2">{{citation
| 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 = 10 Feb 2016
| website = Virology Blog
| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/
}}</ref>
<ref name="StanfordMed20141028">{{citation
| last1 = Stanford Medicine - News Center
| title = Study finds brain abnormalities in chronic fatigue patients]
| date = 28 Oct 2014
| url = https://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html
}}</ref>
<ref name="TullerD20141124brain">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder
| journal = New York Times | volume = Well Blogs
| date = 24 Nov 2014
| url = http://well.blogs.nytimes.com/2014/11/24/brains-of-people-with-chronic-fatigue-syndrome-offer-clues-about-disorder/
}}</ref>
<ref name="TwiskF2015">{{citation
| 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 = 2015, 1(2): 007
| date = 11 Jul 2015
| url = http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf
}}</ref>
<ref name="Phoenix20160222Norway2012">{{citation
| title = Norwegian patient survey: Experiences of therapeutic approaches (2012)
| journal = Phoenix Rising Forum
| date = 22 Feb 2016
| url = http://forums.phoenixrising.me/index.php?threads/norwegian-patient-survey-experiences-of-therapeutic-approaches-2012-update.43193/
}}</ref>
<ref name="viroblogMECFS">{{citation
| title = List of ME/CFS articles published at Virology Blog
| url = http://www.virology.ws/mecfs/
}}</ref>
<ref name="DerekPrisk2009">{{citation
| last1 = Pheby | first1 = D | authorlink1 = Derek Pheby
| last2 = Saffron | first2 = L | authorlink2 = Lisa Saffron
| 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>
<ref name="Wilshire C, et al, 2017">
{{Citation
| 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>
</references>
[[Category:Primers]]

Primer for doctors and researchers

2018-06-15T02:53:07Z

Jeshyr:Fixed Chronic fatigue link previously pointing to disambiguation page

[[Chronic Fatigue Syndrome]] (CFS) is also known as [[Myalgic Encephalomyelitis]] (ME) or [[ME/CFS]]. There are many clinical and research definitions, which creates confusion for doctors, researchers, and patients. ''See:'' [http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Defintions of ME and CFS].

It is worth noting that [[Chronic fatigue (symptom)|chronic fatigue]] (without the "syndrome") is a symptom of many diseases, illnesses, depression and drug therapies. This term is not interchangeable with the grossly misnamed disease [[CFS]].

== Disease onset and course of illness==
The disease [[ME/CFS]] is diagnosed when a person does not recover from a flu-like illness, [[EBV]], [[Mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and meets one or more 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><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."<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> Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity 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>

=== Pediatric ME/CFS ===
Children are also afflicted with ME/CFS.<ref>[http://www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/ ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation]</ref><ref>[https://www.masscfids.org/pediatric-me-cfs-links Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association]</ref> ''See'': [[Pediatric]].

=== Prognosis ===
Prognosis for ME/CFS is generally poor. ''See'': [[Prognosis]]

=== Female to male ratio ===
Like many auto-immune and 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 is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio<ref>[http://emedicine.medscape.com/article/329838-overview#a5 Fibromyalgia:Epidemiology - Medscape]</ref> and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>

==It is not tiredness==

=== Symptoms ===
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. There are many symptoms which people with ME/CFS experience, though those listed below are arguably the most common:
*[[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) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. 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>[http://solvecfs.org/unraveling-post-exertional-malaise/ Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm Post-Exertional Malaise - About.com Health - FMS/ME/CFS]</ref>

:Regarding PEM the [[CFIDS Association of America]] states: "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>

*[[Chronic fatigue (symptom)|chronic fatigue]]
*Chronic pain
*[[Cognitive dysfunction]]
*[[Unrefreshing sleep]], and sleep disturbance
*[[Orthostatic intolerance]], such as [[Postural orthostatic tachycardia syndrome]] ([[POTS]]) or [[Neurally mediated hypotension]] ([[NMH]])
*[[Neuroinflammation]]
*Neurological disturbances such as muscle spasms, numbness/tingling, sensory overload

===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 condition. As a result, ME/CFS symptoms are often considered to be medically unexplained, and therefore psychological in origin. While it is true that the condition 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 energy metabolism.<ref name="IOM2015MECFS"/> Unfortunately, none have yet proved to be specific enough to ME/CFS as to be useful as a biomarker of the condition, and many were identified in small studies, which need replication. Whilst there have been abnormalities identified to be associated with the condition, it cannot yet be determined whether these are a cause or consequence of the condition.

*[[Neuroinflammation]] Japanese Neuroinflammation study<ref name="NakatomiY2014"/>, Younger's Leptin study <ref name="JohnsonC20150126younger"/>
*Reduced brain white matter study by [[Stanford ME/CFS Initiative]]<ref name="StanfordMed20141028"/> New York Times Article with brain images.<ref name="TullerD20141124brain"/>Three major brain abnormalities.<ref>[http://privatehealthcarereports.com/chronic-fatigue-patients-suffer-3-major-brain-abnormalities-findings-may-lead-to-clearer-diagnosis/ Chronic Fatigue Patients Suffer 3 Major Brain Abnormalities; Findings May Lead To Clearer Diagnosis. - Private Health Care]</ref>
*Immune findings: [[Mady Hornig]] & [[Ian Lipkin]]<ref name="Hornig20150201immune"/>
*[[Metabolic features of chronic fatigue syndrome]] by the Open Medicine Foundation show blood chemical signature.
*Autonomic nervous system:
*[[Natural killer cell]] findings
*Gut [[Dysbiosis]]
*[[Rituximab]]

===Epidemiology===

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

*Level of disability (Norwegian study HRQoL)<ref name="Hvidberg2015"/> (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)

===Causes & triggers===
*Outbreaks - see [[List of outbreaks]]
*Possible infectious triggers: [[Enterovirus]]es, [[Herpesvirus]]es including [[Epstein-Barr virus]]<ref name="Hickie2006"/>, [[Q fever]]<ref name="Hickie2006"/>, Ross River Virus<ref name="Hickie2006"/>, ([[Ebola]]?)<ref name="Hickie2006"/>
*Non-viral triggers - [[trauma]], chemical

===Persistence hypotheses===
*Immune findings

===Prognosis===
Dr. [[David Bell]], who serves on the Scientific Advisory Board for the [[Open Medicine Foundation]], discusses three stages of the disease in the article [http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS].

==== Three stages ====
*At the '''''first stage''''', there is an acute illness where [[EBV]] is likely responsible for most adolescents but there is no standard viral illness. The initial virus likely fades away in a week and the patient feels better and is ready for regular activities. He adds "in a person with a gradual onset of symptoms, this stage would be different."
*'''''Second stage''''' "occurs when the symptoms do not disappear, but persist for months to years in roughly the same severity. There is little variation day-to-day, and this time is very confusing. Many medical providers are contacted, most giving conflicting opinions varying from psychological disorders to possible exotic infections, but the tests come back normal."
*In the '''''third stage''''' patients will have mild, gradual improvements over years and patients adjust their lives to the symptoms. Patients may look well and recovery is thought to have taken place. Some patients will make a full recovery in 3-4 years but "recovery and improvement are completely different."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By: David S. Bell, MD]</ref>

Dr. Bell has great concern for patients 35 years old who had become ill as teens and has been studying a group that first became ill in 1985. "Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties." It is now understood that persons with ME/CFS do not have a good long-term prognosis and it is actually poor as "full recovery from untreated CFS is rare."<ref>[http://www.openmedicinefoundation.org/2016/08/01/prognosis-of-mecfs/ Prognosis of ME/CFS – Open Medicine Foundation By: David S. Bell, MD]</ref>

'''Few Return to Pre-illness State of Functioning'''

In about 40% of people with ME/CFS, the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.<ref name="CairnsR2005prog"/><ref name="JoyceJ1997prog"/><ref name="Johnson20130706"/>

===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"/> There are many [http://me-pedia.org/wiki/Welcome_to_MEpedia#Potential_treatments potential treatments], though their evidence-base is limited, as most research into treatments has gone into psychological approaches to treatment.

Two treatments that have garnered much attention are [[Ampligen]] and [[Rituximab]]. Many people have reported enormous benefit from Ampligen, some doctors have been prescribing it for ME/CFS for decades. Attempts to obtain FDA approval for Ampligen in the US have failed so, despite its usefulness, it is unavailable to many. Rituximab, a lymphoma drug, has shown promising results in initial trials in Norway, and there are groups crowdsourcing funding for further trials in other countries. [[Jarred Younger]] announced in March 2016 that he will be undertaking a trial of [[Low dose naltrexone]] ([[LDN]]) in ME/CFS.<ref> http://www.psy.uab.edu/younger/research.html</ref>

===Exercise as treatment===

Two common treatment recommendations for ME/CFS are [[Graded Exercise Therapy]] ([[GET]]) and [[Cognitive behavioral therapy]] ([[CBT]]). These treatments are based on the hypothesis that the condition might have begun with a viral infection but has been perpetuated by [[deconditioning]] from lack of activity, and fear and avoidance of activity. GET & CBT are aimed at addressing these hypothesized causes by challenging the 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 may actually be 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.<ref name="Phoenix20160222Norway2012"/>

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> http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/fulltext</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"/> and an open letter signed by 42 ME/CFS experts from around the world,<ref name="openletrLANCET2"/> 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"/> 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, neurological, autonomic and 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"/><ref> reference needed - Workwell Foundation studies</ref><ref> reference needed - the Lights epigenetic changes post-exercise</ref>

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

Anaerobic threshold, use of HR monitors for activity and pacing. Analeptic, not aerobic.
Energy envelope/pacing - people do better if stay within their envelope than to push to increase activity

===Severely ill patients===
Considerable variation exists in the severity of the condition. 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 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"/> 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 [http://www.openmedicinefoundation.org/mecfs-severely-ill-big-data-study/ 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]], [[Lynn Gilderdale]], [[Laura Hillenbrand]], [[Tom Kindlon]], [[Vanessa Li]], [[Doctor Speedy]], [[Naomi Whittingham]].

Though uncommon, there have been instances of deaths which have been attributed to the condition (see [[Sophia Mirza]]).

== 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.
*[[Metabolic features of chronic fatigue syndrome]]
*[[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]]

==History==
*[[Osler's Web]] is a book on the early history of CFS.
*[[Thirty Years of Disdain]] picks up on the ME/CFS history where Osler's Web leaves off.
*[[List of news articles on ME and CFS]]
*[[Sophia Mirza]]'s life ended due to CFS.
*[http://me-pedia.org/wiki/Disabled_in_Tory_Britain#PACE_trial UK agencies involved in the implementation of the PACE trial. Disabled in Tory Britain - PACE trial]

==Learn more==
*[https://drive.google.com/file/d/1h_ZwdR4567k-mSoWahnC_id0F_fAA3Fb/view Caring for People with Myalgic Encephalomyelitis] (2018) Guide for Caretakers
*[http://www.openmedicinefoundation.org/what-is-mecfs/ What is ME/CFS?] By the [[Open Medicine Foundation]]
*[[Systemic Exertion Intolerance Disease]] (SEID) [http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf ME/CFS Clinicians Guide]
*[http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf IACFS/ME Primer for Clinical Practitioners - 2014 Edition]<ref name="IACFSME2014primer"/>
*[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.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"/>
*[http://treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf ME/CFS Treatment Resource Guide for Practitioners by A Martin Lerner, MD]<ref name="LernerPrimer2011"/>
*[http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598 The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem], 2016.<ref name="Edwards2016"/>
*[[Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education]] (CDC Video, 2016)
*[[Notable studies]]

==See also==
*[https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose#t-826118 What happens when you have a disease doctors can't diagnose] TED Talk by [[Jennifer Brea]]
*[[Primer for the public#Disease_names_and_acronyms_around_the_world|Primer for the public (''Disease names and acronyms around the world'' section)]]
*[[Primer for patients]]
*[[Forgotten Plague]] Documentary
*[[Fibromyalgia]]
*[[David Tuller]] writes and speaks at length and in detail about the PACE Trial.

==References==
<references>



<ref name="Edwards2016">{{Citation
| 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>

<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>

<ref name="IACFSME2014primer">{{citation
| 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 = http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf
}}</ref>

<ref name="LernerPrimer2011">{{citation
| 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>

<ref name="MEASSUKprimer2013">{{citation
| 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>

<ref name="CairnsR2005prog">{{citation
| last1 = Cairns | first1 = R | authorlink1 = Ruth Cairns
| last2 = Hotopf | first2 = M | authorlink2 = Matthew Hotopf
| title = A systematic review describing the prognosis of chronic fatigue syndrome
| journal = Occupational Medicine | volume = 2005;55 | page = 20–31
| doi = 10.1093/occmed/kqi013
| url = http://occmed.oxfordjournals.org/content/55/1/20.full.pdf
}}</ref>

<ref name="JohnsonC20150126younger">{{citation
| last1 = Johnson | first1 = Cort | authorlink1 = Cort Johnson
| title = Getting “Younger”: Leptin, Chronic Fatigue Syndrome and Fibromyalgia]
| date = 26 Jan 2015
| url = http://www.cortjohnson.org/blog/2015/01/26/getting-younger-leptin-chronic-fatigue-fibromyalgia/
}}</ref>

<ref name="Hickie2006">{{citation
| 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 = 2006; 333:575
| date = 14 Sep 2006
| pmid = 16950834 | doi = 10.1136/bmj.38933.585764.AE
| url = http://www.bmj.com/content/333/7568/575.long
}}</ref>

<ref name="Hornig20150201immune">{{citation
| 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 = 1 February 2015
| url = http://advances.sciencemag.org/content/1/1/e1400121
}}</ref>

<ref name="Hvidberg2015">{{citation
| 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 = 6 Jul 2015
| doi = 10.1371/journal.pone.0132421
| url = http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421
}}</ref>

<ref name="ICC2011criteria">{{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 = Baumgarten-Austrheim | first12= B | authorlink12= Barbara Baumgarten-Austrheim
| last13 = Bell | first13= DS | authorlink13= David Bell
| last14 = Carlo-Stella | first14= N | authorlink14= Nicoletta Carlo-Stella
| last15 = Chia | first15= J | authorlink15= John Chia
| last16 = Darragh | first16= A | authorlink16= Austin Darragh
| last17 = Jo | first17= D | authorlink17= Daehyun Jo
| last18 = Lewis | first18= DP | authorlink18= Donald Lewis
| last19 = Light | first19= AR | authorlink19= Alan Light
| last20 = Marshall-Gradisnik | first20= S | authorlink20= Sonya Marshall-Gradisnik
| last21 = Mena | first21= I | authorlink21= Ismael Mena
| last22 = Mikovits | first22= JA | authorlink22= Judy Mikovits
| last23 = Miwa | first23= K | authorlink23= Kunihisa Miwa
| last24 = Murovska | first24= M | authorlink24= Modra Murovska
| last25 = Pall | first25= ML | authorlink25= Martin Pall
| last26 = Stevens | first26= SR | authorlink26= Staci Stevens
| title = Myalgic encephalomyelitis: International Consensus Criteria
| journal = Journal of Internal Medicine | volume = 270 | issue = 4 | page = 327–338
| date = 22 August 2011
| pmid = 21777306 | doi = 10.1111/j.1365-2796.2011.02428.x
| url = http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
}}</ref>

<ref name="IOM2015MECFS">{{citation
| last1 = Institute of Medicine (USA)
| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
| publisher = The National Academies Press | location = Washington, DC, USA
| date = 10 February 2015
| isbn = 978-0-309-31689-7
| url = http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
}}</ref>

<ref name="Johnson20130706">{{citation
| last1 = Johnson | first1 = Cort | authorlink1 = Cort Johnson
| title = ME/CFS Prognosis
| journal = Health Rising
| date = 6 July 2013
| url = http://www.cortjohnson.org/about-chronic-fatigue-syndrome-mecfs/prognosis/
}}</ref>

<ref name="JoyceJ1997prog">{{citation
| last1 = Joyce | first1 = J | authorlink1 = J Joyce
| last2 = Hotopf | first2 = M | authorlink2 = Matthew Hotopf
| last3 = Wessely | first3 = Simon | authorlink3 = Simon Wessely
| title = The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review
| journal = QJM | volume = 90 | issue = 3
| date = 1 March 1997
| pmid = 9093600 | doi = 10.1093/qjmed/90.3.223
| url = http://qjmed.oxfordjournals.org/content/90/3/223.long
}}</ref>

<ref name="MEACTIONpacepetition">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = Petition: Misleading Claims Should Be Retracted
| journal = #MEAction
| date = Oct 2015
| url = http://my.meaction.net/petitions/pace-trial-needs-review-now
}}</ref>

<ref name="MEACTION20160313openletr">{{citation
| last1 = #MEAction | authorlink1 = #MEAction
| title = 24 organisations in 14 countries tell QMUL: Release the PACE data
| date = 13 Mar 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">{{citation
| last1 = ME Association (UK) | authorlink1 = ME Association
| date = 29 May 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">{{citation
| 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 = 2014 Jun;55(6) | page = 945-50
| date = 24 Mar 2014
| pmid = 24665088 | doi = 10.2967/jnumed.113.131045
| url = http://jnm.snmjournals.org/content/55/6/945.long
}}</ref>

<ref name="openletrLANCET2">{{citation
| 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 = Van ElZakker | first39= Michael | authorlink39= Michael Van ElZakker
| 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 = 10 Feb 2016
| website = Virology Blog
| url = http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/
}}</ref>

<ref name="StanfordMed20141028">{{citation
| last1 = Montoya | first1 = José G | authorlink1= Jose Montoya
| title = Right Arcuate Fasciculus Abnormality in Chronic Fatigue Syndrome
| journal = Radiology | volume = 274 | issue = 2
| date = Feb 2015
| url = http://pubs.rsna.org/doi/abs/10.1148/radiol.14141079
}}</ref>

<ref name="TullerD20141124brain">{{citation
| last1 = Tuller | first1 = David | authorlink1 = David Tuller
| title = Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder
| journal = New York Times | volume = Well Blogs
| date = 24 Nov 2014
| url = http://well.blogs.nytimes.com/2014/11/24/brains-of-people-with-chronic-fatigue-syndrome-offer-clues-about-disorder/
}}</ref>

<ref name="TwiskF2015">{{citation
| 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 = 2015, 1(2): 007
| date = 11 Jul 2015
| url = http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf
}}</ref>

<ref name="Phoenix20160222Norway2012">{{citation
| title = Norwegian patient survey: Experiences of therapeutic approaches (2012)
| journal = Phoenix Rising Forum
| date = 22 Feb 2016
| url = http://forums.phoenixrising.me/index.php?threads/norwegian-patient-survey-experiences-of-therapeutic-approaches-2012-update.43193/
}}</ref>

<ref name="viroblogMECFS">{{citation
| title = List of ME/CFS articles published at Virology Blog
| url = http://www.virology.ws/mecfs/
}}</ref>
</references>
[[Category:Primers]]

Post-exertional malaise

2018-06-15T02:52:05Z

Jeshyr:Fixed Chronic fatigue link previously pointing to disambiguation page

'''Post-exertional malaise''' (PEM) is a worsening of many [[ME/CFS]] symptoms as a result of physical or mental exertion. Patients, ME/CFS organizatons, clinicians and researchers that work in the ME/CFS field often referred to it as "the marker," i.e., the main symptom that differentiates [[ME]] and [[CFS]] from other fatiguing illnesses. PEM can last for days to weeks after the exertion.<ref name="JohnsonCsymptoms" /><ref name="FightFatiguePEM" />

Worsening symptoms include [[Chronic fatigue (symptom)|chronic fatigue]], flu-like symptoms, brain fog ([[cognitive dysfunction]]), [[unrefreshing sleep]], chronic pain, [[orthostatic intolerance]], [[neurally mediated hypotension]], [[POTS]] and more. "As with the severity, the exertion needed to trigger PEM theories case-by-case. For some, it might kick in after a little bit of exercise on top of a day's regular activities. For others, is incredible as it may seem, it can just take a trip to the mailbox, a shower, or sitting upright for an hour." <ref>[https://www.verywell.com/what-is-post-exertional-malaise-716023 What Is Post-exertional Malaise - Very Well - Adrienne Dellwo]</ref><ref>[https://www.verywell.com/post-exertional-malaise-715670 Post Exertional Malaise - Very Well - Adrienne Dellwo]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Web MD]</ref><ref>[http://solvecfs.org/wp-content/uploads/2013/10/pem-series.pdf PEM Series - Solve ME/CFS - Jenny Spotila]</ref> Onset of PEM can be delayed 24-72 hours.<ref>[http://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America]</ref>

A 2016 DePaul University study focused on deciphering if post-exertional malaise was a generalized, full-body fatigue and/or a muscle-specific fatigue. The results suggested that PEM is composed of two empirically different experiences, one for generalized fatigue and one for muscle-specific fatigue.<ref name="McManimen, 2016" />

==2015 Institute of Medicine report==
[[File:2015 IOM report PEM chart.png|right|frame|PEM chart from the 2015 Institute of Medicine report]]

This landmark report published in 2015 by the [[United States]] [[Institute of Medicine report]], which assessed all the evidence available, concluded:

<blockquote>"There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS from other conditions"</blockquote>

Pages 84-86 of the report describe the evidence for post-exertional malaise in ME/CFS patients.<ref>[http://www.nap.edu/read/19012/chapter/6?term=exercise#84 Institute of Medicine report pages 84-86, search term exercise]</ref>

==Prevalence==

==Symptom recognition==
===Required===

*In the [[International Consensus Criteria]], postexertional neuroimmune exhaustion is required for a diagnosis of ME.
*In diagnosing [[Systemic Exertion Intolerance Disease]] (SEID).

===Optional===

*In the [[Fukuda criteria]], the symptom of post-exertional malaise can be used to help form a diagnosis.<ref>[http://www.cfids-me.org/cdcdefine.html The CDC (Fukuda 1994) Definition for Chronic Fatigue Syndrome]</ref> Unusually, it is not a required symptom for diagnosis.
*In the [[Canadian Consensus Criteria]] PEM is an option with an and/or with fatigue although most researchers require PEM.
*In the [[Holmes criteria]], prolonged (24 hours or greater) generalized fatigue after levels of exercise that would have been easily tolerated in the patient's premorbid state is an optional criteria for diagnosis, under the section ''Minor Symptom Criteria''.<ref>[http://www.cfids-me.org/holmes1988.html The 1988 Holmes Definition for CFS]</ref>

==Notable studies==
*2018, Comparing Post-Exertional Symptoms Following Serial Exercise Tests<ref>Lariel J. Mateo, University of the Pacific, Poster at 2018 Pacific Undergraduate Research and Creativity Conference (PURCC)</ref> [https://scholarlycommons.pacific.edu/purcc/2018/events/87/ (Abstract)]
*2016, Deconstructing post-exertional malaise: An exploratory factor analysis<ref name="McManimen, 2016" /> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5325824/ (Full Text)]
*2015, [[Myalgic Encephalomyelitis]]: Symptoms and [[Biomarker]]s<ref name="JasonL2015bio" /> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/#!po=2.51799 (Full Text)]
*2015, Changes in Gut and Plasma [[Microbiome]] following [[Exercise]] Challenge in [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)]]<ref name="ShuklaS2015" /> [http://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0145453 (Full Text)]
*2013, Post-exertion malaise in [[chronic fatigue syndrome]]: symptoms and gene expression<ref name="MeyerJ2013" /> [[http://www.tandfonline.com/doi/abs/10.1080/21641846.2013.838444 (Abstract)]
*1999, Demonstration of delayed recovery from fatiguing [[exercise]] in [[chronic fatigue syndrome]] [https://www.ncbi.nlm.nih.gov/pubmed/10209352 (Abstract)]

[[File:2010 VanNess Post exertional worsening of symptoms chart.png|right|frame|Post-exertional worsening of symptoms,<ref name="VanNess2010" />]]

==Notable articles==

*Nov 4, 2016 [http://www.medscape.com/viewarticle/871482#vp_1 Postexertion 'Crash,' not Fatigue per se, Marks Syndrome], MedScape By: Miriam Tucker

*Dec 30, 2015 [http://me-cfs.se/blogg/suggestion-to-replace-pem-by-par/ Suggestion to replace PEM (Post Exertional Malaise) with PAR (Post Activity Relapse)], ''ME Blogg'', 2015<ref name="MEBlogg2015" />

==Talks & interviews==

*2016, [https://www.youtube.com/watch?v=ux93w7yGQ5g&feature=youtu.be Inducing Post-Exertional Malaise in ME/CFS: A Look at the Research Evidence] ([[Peter Rowe]])
*2015, [https://www.youtube.com/watch?v=vfmrPd4-rIE Post-Exertion Malaise: The Intersection of Biology and Behavior], ''[[Dane Cook]], [[Solve ME/CFS]]''<ref name="CookD20151119v" />
*2015, [https://www.youtube.com/watch?v=F1PP21TmUPs 72. Gene-expression and exercise / Gen-expressie en inspanning – dr. Lucinda Bateman] ([[Lucinda Bateman]], [[Science for Patients]])
*2013, [https://www.youtube.com/watch?v=zZ8aPYihkpQ CFS gene expression after exercise (part 1)] ([[Lucinda Bateman]])
*2012, [https://www.youtube.com/watch?v=B20H1u1LjCE&feature=youtu.be Top 10 Things You Should Know About Post-Exertional Relapse] ([[Staci Stevens]])

==Possible causes==
Dysfunction of the ATP ADP cycle. Dr. Sarah Myhill has developed a test to assess ATP profiles. www.healthrising.org/forums/resources/hips-overview-of-dr-myhills-atp-work-in-chronic-fatigue-syndrome-me-cfs.390/

==Potential treatments==

==Learn more==

*[http://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html International CFS/ME Awareness Day 2017 - What Health] (PEM Definition Included) [[CFIDS Association of America]]
*[http://solvecfs.org/wp-content/uploads/2013/10/pem-series.pdf Post-Exertional Malaise in Chronic Fatigue Syndrome], ''[[Jennie Spotila]], [[Solve ME/CFS]]'', 2010<ref name="SpotilaJ2010" />
*[http://solvecfs.org/post-exertional-malaise-cause-and-effect/ Post-Exertional Malaise: Cause and Effect], ''[[Jennie Spotila]], [[Solve ME/CFS]]'', 2012<ref name="SpotilaJ20120523" />
*[http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm Definition of Post-Exertional Malaise], ''About Health'', 2015<ref name="AboutHealthPEM" />
*[https://www.youtube.com/watch?v=ckT9BbSH0Lo Post-Exertional Malaise] Video, ''[[ME/CFS Ghost]]'', 2016<ref>[https://www.youtube.com/watch?v=ckT9BbSH0Lo Post-Exertional Malaise - The ME/CFS Ghost]</ref>
*2016, [http://www.healthrising.org/blog/2016/07/04/exercise-intolerance-fibromyalgia-chronic-fatigue-pots-explained/ The Exercise Intolerance in POTS, ME/CFS and Fibromyalgia Explained?]

==See also==

*[[Exercise]]

== References ==
<references>
<ref name="AboutHealthPEM">{{citation
| author = About Health
| title = Definition of Post-Exertional Malaise
| date = 8 Oct 2015
| url = http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm
}}</ref>
<ref name="CookD20151119v">{{citation
| last1 = Cook | first1 = DB | authorlink1 = Dane Cook
| title = Deciphering Post Exertion Malaise: The Intersection of Biology and Behavior
| type = video
| journal = Solve ME/CFS
| date = 19 Nov 2015
| url = https://www.youtube.com/watch?v=vfmrPd4-rIE
}}</ref>
<ref name="FightFatiguePEM">{{citation
| author = Fighting Fatigue
| title = Post-Exertional Malaise – A Hallmark Symptom of ME/CFS
| access-date = 29 March 2016
| url = http://www.fightingfatigue.org/post-exertional-malaise-a-hallmark-symptom-of-mecfs/
}}</ref>
<ref name="JasonL2015bio">{{Citation
| last1 = Jason | first1 = LA | authorlink1 = Leonard Jason
| last2 = Zinn | first2 = ML | authorlink2 = Marcie Zinn
| last3 = Zinn | first3 = MA | authorlink3 = Mark Zinn
| display-authors =
| title = Myalgic Encephalomyelitis: Symptoms and Biomarkers
| journal = Current Neuropharmacology | volume = 13(5) | page = 701-734
| date = September 2015
| doi = 10.2174/1570159X13666150928105725
| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/#!po=2.51799
}}</ref>
<ref name="JohnsonCsymptoms">{{citation
| last1 = Johnson | first1 = C | authorlink1 = Cort Johnson
| title = Health Rising: ME/CFS Symptoms
| access-date = 29 March 2016
| url = http://www.cortjohnson.org/about-chronic-fatigue-syndrome-mecfs/symptoms/
}}</ref>
<ref name="McManimen, 2016">{{Citation
| last1 = McManimen | first1 = SL | authorlink1 =
| last2 = Sunnquist | first2 = ML | authorlink2 = Madison Sunnquist
| last3 = Jason | first3 = LA | authorlink3 = Leonard Jason
| title = Deconstructing post-exertional malaise: An exploratory factor analysis.
| journal = Journal of Health Psychology | volume = | issue = | page =
| date = 2016
| pmid = 27557649
| doi = 10.1177/1359105316664139
}}
</ref>
<ref name="MEBlogg2015">{{citation
| author = ME Blogg
| title = Suggestion to replace PEM by PAR
| date = 30 Dec 2015
| url = http://me-cfs.se/blogg/suggestion-to-replace-pem-by-par/
}}</ref>
<ref name="MeyerJ2013">{{citation
| last1 = Meyer | first1 = JD | authorlink1 = Jacob Meyer
| last2 = Light | first2 = AR | authorlink2 = Alan Light
| last3 = Shukla | first3 = SK | authorlink3 = Sanjay Shukla
| last4 = Clevidence | first4 = D | authorlink4 = Derek Clevidence
| last5 = Yale | first5 = S | authorlink5 = Steven Yale
| last6 = Stegner | first6 = AJ | authorlink6 = Aaron Stegner
| last7 = Cook | first7 = DB | authorlink7 = Dane Cook
| display-authors =
| title = Post-exertion malaise in chronic fatigue syndrome: symptoms and gene expression
| journal = Fatigue: Biomedicine, Health & Behavior | volume = 1 | issue = 4 | page = 190-209
| date = 2 Oct 2013
| doi = 10.1080/21641846.2013.838444
| url = http://www.tandfonline.com/doi/abs/10.1080/21641846.2013.838444
}}</ref>
<ref name="ShuklaS2015">{{Citation
| last1 = Shukla | first1 = SK | authorlink1 = Sanjay Shukla
| last2 = Cook | first2 = D | authorlink2 = Dane Cook
| last3 = Meyer | first3 = JD | authorlink3 = Jacob Meyer
| last4 = Vernon | first4 = SD | authorlink4 = Suzanne Vernon
| last5 = Lee | first5 = T | authorlink5 = Thao Lee
| last6 = Clevidence | first6 = D | authorlink6 = Derek Clevidence
| last7 = Robertson | first7 = CE | authorlink7 = Charles Robertson
| last8 = Schrodi | first8 = SJ | authorlink8 = Steven Schrodi
| last9 = Yale | first9 = S | authorlink9 = Steven Yale
| last10 = Frank | first10= DN | authorlink10= Daniel Frank
| display-authors = 3
| title = Changes in Gut and Plasma Microbiome following Exercise Challenge in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
| journal = Plos One | volume = 10(12) | page =
| date = 18 December 2015
| pmid =
| doi = 10.1371/journal.pone.0145453
| url = http://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0145453
}}</ref>
<ref name="SpotilaJ2010">{{citation
| last1 = Spotila | first1 = JM | authorlink1 = Jennie Spotila
| title = Post-Exertional Malaise in Chronic Fatigue Syndrome
| journal = Solve ME/CFS
| date = 2010
| url = http://solvecfs.org/wp-content/uploads/2013/10/pem-series.pdf
}}</ref>
<ref name="SpotilaJ20120523">{{citation
| last1 = Spotila | first1 = JM | authorlink1 = Jennie Spotila
| title = Post-Exertional Malaise: Cause and Effect
| journal = Solve ME/CFS
| date = 23 May 2012
| url = http://solvecfs.org/post-exertional-malaise-cause-and-effect/
}}</ref>
<ref name="VanNess2010">{{Citation
| last1 = VanNess | first1 = M | authorlink1 = Mark VanNess
| last2 = Stevens | first2 = S | authorlink2 = Staci Stevens
| last3 = Bateman | first3 = L | authorlink3 = Lucinda Bateman
| last4 = Stiles | first4 = TL | authorlink4 = TL Stiles
| last5 = Snell | first5 = CR | authorlink5 = Christopher Snell
| display-authors =
| title = Postexertional malaise in women with chronic fatigue syndrome
| journal = Journal of Women's Health | volume = | issue = | page =
| date = February 2010
| pmid = 20095909
| doi = 10.1089/jwh.2009.1507
}}
</ref>
</references>

[[Category:Signs and symptoms]]

Chronic fatigue syndrome

2018-06-15T02:50:42Z

Jeshyr:Fixed Chronic fatigue link previously pointing to disambiguation page

'''Chronic fatigue syndrome''' (CFS) is the name coined by the [[Centers for Disease Control]] (CDC) in response to an outbreak of "chronic flu-like illness" at [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]], Lake Tahoe in 1984-1985.<ref>[http://www.nytimes.com/1987/07/28/science/fatigue-virus-has-experts-more-baffled-and-skeptical-than-ever.html?pagewanted=1 Fatigue 'Virus' Has Experts More Baffled And Skeptical Than Ever - NY Times July 1987]</ref>

As of February 2013, the CDC recognized that more than one million Americans have CFS.<ref>[http://www.cdc.gov/cfs/causes/risk-groups.html Chronic Fatigue Syndrome - CDC]</ref> The February 2015 [[Institute of Medicine report]] stated that there are 836,000 to 2.5 million [[ME/CFS]] patients.<ref name="IOM2015MECFS"/> The [[Prognosis]] for ME/CFS is generally poor.

Chronic Fatigue Syndrome should be distinguished from [[Chronic fatigue (symptom)|chronic fatigue]] (CF), which is a symptom of many different conditions, though not a condition in its own right. These terms are often confused by the media, healthcare practitioners, and the general public. 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&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 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)]

== Symptoms ==

=== Hallmark symptom ===
*[[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) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. The patient will experience even greater fatigue as well as exacerbate 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>[http://solvecfs.org/unraveling-post-exertional-malaise/ Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Symptoms - Web MD]</ref><ref>[http://chronicfatigue.about.com/od/cfsglossary/g/malaise.htm Post-Exertional Malaise - About.com Health - FMS/ME/CFS]</ref>

:Regarding PEM the [[CFIDS Association of America]] states: "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>

=== Core and additional symptoms (see IOM Clinicians Guide below) ===
<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">
*[[Orthostatic intolerance]]
*[[POTS]]
*[[Cognitive dysfunction]]
*[[Unrefreshing sleep]]
*[[Chronic fatigue (symptom)|chronic fatigue]]
*[[Chronic pain]]
*Immune Impairment
*Infection
</div>

=== Other symptoms, comorbids ===
*Neurologic impairments - ME: [[ICC]]<ref>[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427890/ Myalgic encephalomyelitis: International Consensus Criteria - Wiley - Journal of International Medicine]</ref>
*[[Fibromyalgia]], [[Irritable bowel syndrome]], [[Temporomandibular joint disorder]] (TMJ) and [[Multiple Chemical Sensitivity]]<ref>[http://solvecfs.org/what-is-mecfs/ What is ME/CFS? - Solve ME/CFS Initiative]</ref>

==== Expanded lists of symptoms ====

*[http://chronicfatigue.about.com/od/whatischronicfatigue/a/cfs_symptoms.htm Chronic Fatigue Syndrome Symptoms - The Monster List!]

*[http://solvecfs.org/what-is-mecfs/ What are the symptoms of ME/CFS?]

== Clinicians guides ==

====US Government guides on symptoms====
*The [[Institute of Medicine report]] - IOM [http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Clinicians Guide]
*[http://www.cdc.gov/cfs/symptoms/index.html CDC - CFS Symptoms]

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

== Disease onset and course of illness==
The disease [[ME/CFS]] is diagnosed when a person does not recover from a flu-like illness, [[EBV]], [[Mononucleosis]], [[HHV]], [[Q fever]], [[Virus]] or other infections and meets one or more 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><ref>[http://me-pedia.org/wiki/Definitions_of_ME_and_CFS Definitions of ME and CFS - MEpedia]</ref> "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."<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> Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity 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>

=== Female to male ratio ===
Like many auto-immune and 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 is 6:1.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/21244747 Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010]</ref> [[Fibromyalgia]] has a F/M 7:1 ratio and some ME/CFS patients have this additional diagnosis.<ref>[http://www.cdc.gov/arthritis/basics/fibromyalgia.htm Fibromyalgia - CDC]</ref><ref>[http://solvecfs.org/what-is-mecfs/ What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative]</ref>

[[Jennifer Brea]] gives a [https://en.wikipedia.org/wiki/Women's_Media_Center WMC] Live radio interview addressing F/M auto-immune ratio and the disease [https://secure-hwcdn.libsyn.com/p/1/c/3/1c390d4707a99658/WMCLive_Episode159.mp3?c_id=11198959&expiration=1458320878&hwt=eb06639b1ec5ae7b7fd4e0fd83cc70f9 at 5:00].

==Clinical course==
From the [[Centers for Disease Control]] (CDC): ''What's the Clinical Course of CFS?''

::The severity of CFS varies from patient to patient. Some people can maintain fairly active lives. For most patients, however, CFS significantly limits their work, school, and family activities for periods of time.

::While symptoms vary from person to person in number, type, and severity, all CFS patients are limited in what they can do to some degree. CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), and similar chronic conditions.

::CFS often affects patients in cycles: Patients will have periods of illness followed by periods of relative well-being. For some patients, symptoms may diminish or even go into complete remission; however, they often recur at a later point in time. This pattern of remission and relapse makes CFS especially hard for patients to manage. Patients who are in remission may be tempted to overdo activities when they're feeling better, but this overexertion may actually contribute to a relapse.

::The percentage of CFS patients who recover is unknown, but there is some evidence to indicate that patients benefit when accompanying conditions are identified and treated and when symptoms are managed. High-quality health care is important.<ref>[http://www.cdc.gov/cfs/symptoms/index.html What's the Clinical Course of CFS? - CDC]</ref>

==Name controversy==
The name Chronic Fatigue Syndrome is controversial, as many consider it stigmatizing. For decades, patient advocates have been lobbying the CDC to instead use the name [[Myalgic Encephalomyelitis]] ([[ME]]), though the CDC has refused.<ref>[http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/7603 A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name - Chronic Fatigue Support]</ref> Most patients and patient organizations prefer the name [[ME]], or the hybrid [[ME/CFS]].

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: "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"/>

Dr. [[Nancy Klimas]] discusses the name controversy in the video [https://www.youtube.com/watch?v=c2vIQ92wU9Y ME/CFS Diagnosis and Name].

== Notable studies ==
*2016, [[Metabolic features of chronic fatigue syndrome]]

*2016, A six-year longitudinal MRI study found that [[Chronic Fatigue Syndrome]] (per Fukuda & Canadian Consensus Criteria) is associated with decreases in [[white matter]], [[gray matter]] and blood volume deficits in the brain as compared to healthy controls.<ref name="Shan2016"/><ref name="JaimeS20160505"/>

*2016, Dr. [[Jose Montoya]] and Dr. [[Michael Zeineh]]'s brain imaging studies show CFS patients suffer 3 brain abnormalities: an overall reduction in white matter; consistent abnormality in the [[right arcuate fasciculus]]; thickened gray matter at two areas of the brain connected by the right [[arcuate fasciculus]].<ref>[http://privatehealthcarereports.com/chronic-fatigue-patients-suffer-3-major-brain-abnormalities-findings-may-lead-to-clearer-diagnosis/ Chronic Fatigue Patients Suffer 3 Major Brain Abnormalities; Findings May Lead To Clearer Diagnosis. - Patient Health Care]</ref>

*2014, [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014)]] With brain images.

== History ==
*[[Osler's Web]] is a book on the early history of CFS.
*[[Thirty Years of Disdain]] picks up on the ME/CFS history where Osler's Web leaves off.
*[[Forgotten Plague]] 2015 documentary on the CDC and US patient history of CFS.
*[[List of news articles on ME and CFS]]
*[[Sophia Mirza]]'s life ended due to CFS.
*[http://me-pedia.org/wiki/Disabled_in_Tory_Britain#PACE_trial UK agencies involved in implementation of the PACE trial. Disabled in Tory Britain - PACE trial]

==Learn more==
*[[Definitions of ME and CFS]]
*[[Brain imaging]]
*[[Pediatric]]

==See also==
*[[Systemic Exertion Intolerance Disease]] ([[SEID]]) is the [[Institute of Medicine report]]'s name and diagnostic criteria.
*[[Primer for the public]] An extensive overview of the disease(s) ME, CFS, ME/CFS and SEID, their criteria, history, research and more.
*[[PACE trial]] The highly controversial UK trial that led to the implementation of [[Graded exercise therapy]] (GET) and [[Cognitive behavioral therapy]] (CBT) as treatment paths for CFS.
*[[XMRV]]

== References ==
<references>

<ref name="IOM2015MECFS">{{citation
| last1 = Institute of Medicine (USA)
| last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
| display-authors =
| title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
| date = 10 February 2015
| url = http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
}}</ref>

<ref name="Komaroff20160217video">{{citation
| last1 = Komaroff | first1 = Anthony | authorlink1 = Anthony Komaroff
| last2 = Iskander | first2 = John | authorlink2 = John Iskander
| displayauthors =
| title = Interview with Dr Anthony Komaroff
| journal = CDC Public Health Ground Rounds - Beyond the Data - Chronic Fatigue Syndrome: Advancing Research and Clinical Education
| date = 17 Feb 2016
| url = http://youtu.be/hRdn4A2SGic
}}</ref>

<ref name="JaimeS20160505">{{citation
| author = Jaime S | authorlink1 = Jaime S
| title = Progressive Brain Changes in Patients with Chronic Fatigue Syndrome: Are our Brains Starved of Oxygen?
| journal = #MEAction
| date = 2016-05-05
| url = http://www.meaction.net/2016/05/05/progressive-brain-changes-in-patients-with-chronic-fatigue-syndrome-are-our-brains-starved-of-oxygen/
}}</ref>

<ref name="Shan2016">{{citation
| last1 = Shan | first1 = ZY | authorlink1 = Zack Shan
| last2 = Kwiatek | first2 = R | authorlink2 = Richard Kwiatek
| last3 = Burnet | first3 = R | authorlink3 = Richard Burnet
| last4 = Del Fante | first4 = P | authorlink4 = Peter Del Fante
| last5 = Staines | first5 = DR | authorlink5 = Donald Staines
| last6 = Marshall-Gradisnik| first6 = SM | authorlink6 = Sonya Marshall-Gradisnik
| last7 = Barnden | first7 = LR | authorlink7 = Leighton Barnden
| title = Progressive brain changes in patients with chronic fatigue syndrome: A longitudinal MRI study
| journal = Journal of magnetic resonance imaging: JMRI
| date = 2016-04-28
| pmid = 27123773 | doi = 10.1002/jmri.25283
| url = http://onlinelibrary.wiley.com/doi/10.1002/jmri.25283/abstract;jsessionid=070BE1111DE3D52AC62FD00B68E96028.f03t01
}}</ref>


</references>

[[Category:Diagnoses]]
[[Category:Disease names]]

Myalgic encephalomyelitis

2018-06-15T02:49:22Z

Jeshyr:/* Other diagnostic criteria */ Fixed Chronic fatigue link previously pointing to disambiguation page

{{Cleanup | reason=This article needs citations. Please see the discussion page | date=November 2015}}

'''Myalgic Encephalomyelitis''' (ME) is a chronic, [[inflammatory]], post-viral, primarily [[neurological]] disease that is multisystemic, i.e. affecting the [[central nervous system]] (CNS), [[immune system]], [[cardiovascular system]], [[endocrinological system]], and [[musculoskeletal system]].<ref>[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis - NORD]</ref><ref>[http://paradigmchange.me/wp-content/uploads/2016/04/ME-CFS-Medical-Abormalities-040416.pdf Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) Medical Abnormalities Research Citations Compiled by Lisa Petrison, Ph.D.Updated April 4, 2016 - PDF]</ref> It has been classified by the ''World Health Organization'' (WHO) as a neurological disease since 1969.<ref>[https://en.wikipedia.org/wiki/History_of_chronic_fatigue_syndrome#International_classifications History of chronic fatigue syndrome - International Classifications]</ref><ref>[http://www.name-us.org/DefintionsPages/DefinitionsArticles/Hoopersdescription.pdf The Terminology of ME & CFS By Professor Malcolm Hooper - PDF]</ref> An ''M.E. Support'' article [http://www.mesupport.co.uk/index.php?page=the-symptoms-of-m-e#Cardinal-Symptoms The Symptoms of Myalgic Encephalomyelitis] covers cardinal symptoms, secondary features, and characterized symptoms.

A hallmark symptom of ME, [[Post-exertional malaise]], is intolerance to previously trivial effort such as walking to the mailbox, running an errand or grocery shopping, taking a shower or brushing teeth, and deterioration of health from persistent or repeated exertion.<ref>[https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs ME/CFS - Pathways to Prevention - NIH]</ref><ref>[http://www.meactionuk.org.uk/definition.html Research Descriptions of M.E. - ME Action UK]</ref><ref>[http://www.cfids-me.org/ramsay86.html The Clinical Features of Myalgic Encephalomyelitis Melvin Ramsay, M.D., 1986]</ref><ref>[https://www.verywell.com/what-is-post-exertional-malaise-716023 What Is Post-exertional Malaise - Very Well - Adrienne Dellwo]</ref><ref>[https://www.verywell.com/post-exertional-malaise-715670 Post Exertional Malaise - Very Well - Adrienne Dellwo]</ref><ref>[http://www.webmd.com/chronic-fatigue-syndrome/chronic-fatigue-syndrome-symptoms Chronic Fatigue Syndrome - Web MD]</ref><ref>[http://solvecfs.org/wp-content/uploads/2013/10/pem-series.pdf PEM Series - Solve ME/CFS - Jenny Spotila]</ref> Myalgic encephalomyelitis is usually a relapsing-remitting disease with new symptoms occurring either in discrete relapses (or “crashes”) or accruing over time.<ref>[http://www.medscape.com/viewarticle/871482 Postexertion 'Crash,' not Fatigue per se, Marks Syndrome - MedScape]</ref> The ''National Organization for Rare Disorders'' (NORD) states: "Symptoms and their severity can fluctuate over the course of the illness, even from hour to hour."<ref>[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis - NORD]</ref> The US [[National Institutes of Health]] notes that sensitivity to noise, light and chemicals may force patients to withdraw from society.<ref>[https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs ME/CFS - Pathways to Prevention - Advancing the Research on Myalgic encephalomyelitis/Chronic Fatigue Syndrome]</ref>

ME does not have a cure, though treatments including the antiviral [[Ampligen]] (now approved for use on [[ME/CFS]] patients in [[Argentina]]) and immune system modulator [[Rituximab]] are being trialled.<ref>[http://www.prohealth.com/me-cfs/me-chronic-fatigue-syndrome-experimental-treatments.cfm Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Experimental Treatments - ProHealth (Ampligen and Rituximab Tabs]</ref> There is a progressive form of ME but it is rarer than the relapsing-remitting type.<ref>[http://www.meassociation.org.uk/wp-content/uploads/fulltext_pmr-v2-id10521.pdf Progressive Myalgic Encephalomyelitis (ME) or A New Disease? A Case Report]</ref>

A [[CFS/ME]] Norwegian study shows the disease affects all ages, with two peak ages of 10-19 years and 30-39 years; it is more common in women than in men.<ref>[http://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-014-0167-5 Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012 - BMC Medicine]</ref> Research by the [[Open Medicine Foundation]] cited in its paper, [[Metabolic features of chronic fatigue syndrome]] which studied severe [[CFS]], found that the disease is different in men and women but this is not related to testosterone or estrogen. [[Michael VanElzakker]] notes there are [http://me-pedia.org/wiki/Michael_VanElzakker#Male_and_female_differences_in_neuropathic_pain male and female differences in neuropathic pain]. A study of UK and Dutch co-horts found "younger children had a more equal gender balance compared to adolescents and adults."<ref>[https://www.ncbi.nlm.nih.gov/pubmed/26510728 Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is different in children compared to in adults: a study of UK and Dutch clinical cohorts. BMJ Open - PubMed]</ref>

There is a controversial view that ME is not a chronic infectious or autoimmune disease, but rather a psychosocial illness triggered by infection or stress and with a "high attack rate in females compared with males".<ref>[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1700894/ Royal Free Epidemic of 1955: A Reconsideration - McEvedy and Beard - NCBI NLM NIH - PMC]</ref> The [[BPS model]] is being applied to ME, CFS and [[PVFS]] by psychiatrists in the UK. However, Dr. VanElzakker said, “Everyone here [at Harvard] recognizes that it’s a neuroimmune condition and approaches it that way.”<ref>[http://www.meaction.net/2016/12/12/dr-vanelzakker-two-new-mecfs-studies-at-harvard/ Dr VanElzakker: two new ME/CFS studies at Harvard - Jaime S - MEAction]</ref>

ME and CFS patients are barred from donating blood or organs in the [[United Kingdom]], [[United States]] and [[New Zealand]] while symptoms persist.<ref>[http://www.meassociation.org.uk/2010/08/people-with-mecfs-to-be-permanently-excluded-from-giving-blood-in-the-uk-from-1-november-this-year-department-of-health-announcement/ People with ME/CFS to be permanently excluded from giving blood in the UK from 1 November this year – Department of Health announcement - ME Association]</ref><ref>[http://www.redcrossblood.org/news/northcentral/american-red-cross-statement-xmrv-and-chronic-fatigue-syndrome American Red Cross Statement on XMRV and Chronic Fatigue Syndrome - American Red Cross]</ref><ref>[http://www.washingtonpost.com/wp-dyn/content/article/2010/12/03/AR2010120305888.html Chronic fatigue patients barred from blood donation - Washington Post - By: Rob Stein - Dec 3, 2010]</ref><ref>[http://www.nzblood.co.nz/Give-blood/Donating/Detailed-eligibility-criteria#C - NZBlood]</ref>

==Name describes disease==
The name Myalgic Encephalomyelitis describes the disease: Myalgic (muscle pain), Encephalo (brain), myel (spinal cord), itis (inflammation).<ref>[http://www.name-us.org/DefintionsPages/DefinitionsArticles/Hoopersdescription.pdf The Terminology of ME & CFS By Professor Malcolm Hooper]</ref> The patient has muscle pain and the brain and spinal cord are inflamed.

Dr. [[Melvin Ramsay]] used the term ME<ref>[http://www.name-us.org/DefintionsPages/DefinitionsArticles/Hoopersdescription.pdf The Terminology of ME & CFS By Professor Malcolm Hooper]</ref> which is now proving accurate due to brain fMRI's that detail the brain inflammation. The ''NY Times'' article [[Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder]] by [[David Tuller]] has images of a patient diagnosed with [[ME/CFS]] that clearly show brain inflammation. Other [http://me-pedia.org/wiki/Brain_imaging#Research brain imaging research] has been completed. Dr. VanElzakker proposed the [[Vagus nerve infection hypothesis]] in which he hypothesizes a [[Vagus nerve]] infection causing symptoms of [[ME/CFS]].<ref>[http://www.meaction.net/2016/12/12/dr-vanelzakker-two-new-mecfs-studies-at-harvard/ Dr VanElzakker: two new ME/CFS studies at Harvard - Jaime S. - MEAction]</ref>

A survey by [[The MEAction Network]] in 2016 found patients much preferred the name myalgic encephalomyelitis to other names including [[Chronic Fatigue Syndrome]].<ref>[http://www.meaction.net/2016/08/07/meaction-rfi-poll-report-1-of-3/ MEAction RFI Poll Report (Part 1 of 3)]</ref>

==Signs and symptoms==
Over-exertion can make ME worse and the effects are often delayed and may not be seen within 24 hours.<ref>[http://www.investinme.org/landerP5.shtml What is ME - Invest in ME Research]</ref> <ref>[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Myalgic Encephalomyelitis - NORD]</ref>

[[Invest in ME]] outlines [[ME]] symptoms and notes symptoms can range from mild to very severe and can include:

<div style="column-count:2;-moz-column-count:2;-webkit-column-count:2">

*Reaction to physical and mental activity and sensory input
*Cardiovascular and [[Cardiac problems]]
*[[Cognitive dysfunction]]
*[[Gastrointestinal system]] Problems
*[[Headache]]
*Hormonal Imbalance
*Immunological Problems
*[[Muscle fatigability]] and Intense Pain
*Neurological Problems
*Sleep Problems ([[Sleep dysfunction]])

</div>

=== Post-exertional malaise ===
A core symptom, [[Post-exertional malaise]], is used in diagnosing [[ME]], [[CFS]], [[ME/CFS]] and [[SEID]].

==Diagnosis==
The [[International Consensus Criteria]] (ICC) is thought to be the best tool for diagnosing [[ME]] while the [[Canadian Consensus Criteria]] (CCC) diagnoses both ME and [[Chronic Fatigue Syndrome]] (CFS) and is an [[ME/CFS]] diagnostic tool.

The original criteria developed by [[Melvin Ramsay]], the [[Ramsay definition]], is not used for diagnosing ME today.

=== Other diagnostic criteria ===
The UK [[Oxford criteria]] (the US [[Institute of Medicine report]] has called for its retirement)<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]</ref> and the US CDC [[Fukuda criteria]] (used in some research worldwide) are not describing ME but instead describe [[Chronic fatigue (symptom)|chronic fatigue]] (CF). CF should not be confused with [[CFS]]. Many patients and ME organizations believe CFS must not be confused with ME nor its diagnostic criteria used to describe, diagnose or research ME.

===Differential diagnosis===
The signs and symptoms of ME can be similar to other medical problems, "such as cancer, [[multiple sclerosis]], lupus, [[brucellosis]], or another condition."<ref>[https://www.dartmouth-hitchcock.org/medical-information/health_encyclopedia/nord792 Dartmouth Hitchock - Myalgic Encephalomyelitis National Organization for Rare Disorders, Inc.]</ref> Additional testing may be needed to help distinguish ME from these other problems.

==Disease course and clinical subtypes==
'''Primary Phase'''

"The first phase is an epidemic or endemic (sporadic) infectious disease generally with an incubation period of 4 to 7 days; in most, but not all cases, an infection or infectious process is evident."<ref>[http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf ME Definition - Nightingale - PDF pg. 6]</ref>

'''Secondary Chronic Phase'''

"The second and chronic phase follows closely on the first phase, usually within two to seven days; it is
characterized by a measurable diffuse change in the function of the Central Nervous System. This
second phase is the persisting disease that most characterizes M.E."<ref>[http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf ME Definition - Nightingale - PDF pg. 6]</ref>

'''Presentation'''

"The initial presentation takes one of two forms: a severe, incapacitating prolonged illness, or an apparent remission followed by increasing relapses until the patient is forced to recognize exertional limitation. The most common initial symptoms reported are: Pain in the spine, neck or head; mild fever and flu-like symptoms; nausea or vomiting; flaccid muscle weakness; and muscle pain or tenderness."<ref>[https://arainbowatnight.com/whatisme/ https://arainbowatnight.com/whatisme/ What Is ME? - Disease course and clinical subtypes - A rainbow at night]</ref> For some people, ME is triggered by Hepatitis B vaccination <ref>[http://www.meassociation.org.uk/2016/01/were-collecting-information-on-hepatitis-b-vaccination-and-mecfs-can-you-help-13-january-2016/ ME Association Survey Report, 2010]</ref>, blood transfusion<ref>[https://www.masscfids.org/resource-library/3-research/119-can-blood-transfusions-cause-cfids- Can Blood Transfusions Cause ME/CFS? - Massachusetts CFIDS/ME & FM Association]</ref>, or chemical poisoning<ref>[http://www.prohealth.com/library/showarticle.cfm?libid=8267 Tired or Toxic? Chronic Fatigue Syndrome and Environmental Toxicity - Michael A. Schmidt - ProHealth]</ref><ref>[http://drmyhill.co.uk/wiki/Toxic_causes_of_CFS_-_the_more_I_ask,_the_more_I_find! Toxic causes of CFS - the more I ask, the more I find! - Dr. Myhill.co.uk]</ref> (See: [[Countess of Mar]]), although it is now thought organophosphate poisoning is a different illness.<ref>[http://apt.rcpsych.org/content/aptrcpsych/6/3/187.full.pdf Chronic exposure to organophosphates: background and clinical picture - Robert Davies, Ghouse Ahmed & Tegwedd Freer]</ref><ref>[https://arainbowatnight.com/whatisme/ https://arainbowatnight.com/whatisme/ What Is ME? - Disease course and clinical subtypes - A rainbow at night]</ref>

'''Later course'''

"The later course of ME. is difficult to predict, and may either become consistently severe, improve to a plateau, or be markedly relapse-remitting. In some, even prolonged severe incapacitation can be relieved by unpredictable remission, although relapse is always possible. The degree of impairment and complexity depends on the degree of diffuse brain injury and end organ involvement."<ref>[https://arainbowatnight.com/whatisme/#Signs_and_symptoms What Is ME? - Disease course and clinical subtypes - A rainbow at night]</ref>

'''Subgroups/types'''

"The evidence for subgroups is strengthened by research using heterogeneous CFS criteria, although this artificial heterogeneity also hampers consensus. It is likely that subtypes exist within the ME milieu based on the clinical findings, history, and perhaps gender of patients."<ref>[https://arainbowatnight.com/whatisme/#Signs_and_symptoms What Is ME? - Disease course and clinical subtypes - A rainbow at night]</ref>

=== Subtypes proposed ===
Kerr et al proposed 7 different subsets for “CFS” as it is defined today:<ref>[http://me-ireland.com/genes2.pdf Seven genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis: a detailed analysis of gene networks and clinical phenotypes - JCP Online]</ref>

* Subtype 1 This is one of the more severe subtypes. Effects are cognitive, musculoskeletal, sleep-related and anxiety/depression.

* Subtype 2 This is one of the more severe subtypes. Effects are musculoskeletal, pain and anxiety/depression.

* Subtype 3 This subtype has the mildest symptoms.

* Subtype 4 This subtype is dominated by cognitive issues.

* Subtype 5 Effects are musculoskeletal and gastrointestinal.

* Subtype 6 This subtype is dominated by post-exertional malaise (extreme crash after exercise or exertion.)

* Subtype 7 This is one of the more severe subtypes. Effects are pain, infections, musculoskeletal, sleep-related, neurological, gastrointestinal, neurocognitive and anxiety/depression.

==Severity==

===Factors triggering a relapse===

ME relapses are often a result of over-activity, but can occur without warning with no obvious inciting factors. Exposure to increased sensory information in light, sound, and movement can provoke a sensory storm.

Infections, such as the common cold, influenza and gastroenteritis, also increase the risk for a relapse. Heat and cold can transiently increase symptoms.

Pregnancy can directly affect the susceptibility for relapse. Later pregnancy appears to offer a natural protection against relapses, and there are anecdotal reports of postpartum remission. However, pregnancy does not seem to influence long-term disability.

==Pathophysiology==

Although much is known about abnormalities in ME., the reasons why they occur are not known. There are two ME. conferences held in the UK each year attended by international research luminaries, and other conferences held worldwide.

ME is a complex disease in which the immune and neurological systems appear dysregulated and in conflict, producing a wide variety of findings.

The problem is that most of the research in recent years has been conducted on people with CFS. This is a heterogeneous population, and includes patients with psychiatric disorders, as well as vitamin and nutritional deficiencies (especially vitamin D) and post-viral states such as ME.

According to a strictly immunological explanation of CFS, the inflammatory processes triggered by [[T cell]]s create leaks in the [[blood-brain barrier]] (a capillary system that should prevent entrance of T-cells in the nervous system). These leaks, in turn, cause a number of other damaging effects such as swelling, activation of macrophages, and more activation of [[cytokine]]s and other destructive proteins such as Rnase-L. A reduced ability to move metabolites in and out of cells (channelopathy) has been implicated in this process. This may also be applicable to ME.

Some evidence shows viral infection of muscle and brain in at least a proportion of sufferers. This triggers inflammatory processes, stimulating other immune cells and soluble factors like cytokines and antibodies. A model for late ME has been proposed analogously to post-polio syndrome in which repaired nerve tissue forms inappropriately [The Late Effects of ME: Can they be distinguished from the Post-polio syndrome?]. Radiological research on ME has shown hypoperfusion of the brain stem and an abnormal response to exertion, but research on CFS is often inconsistent and must be interpreted with caution. For example, a reduced volume of grey matter may be a result of a lack of activity and is reversible with cognitive behavior therapy.

An inquest into the death of [[Sophia Mirza]] from ME found inflammation of the dorsal spine ganglia and liver abnormalities. However, she had co-morbid disorders.

Hemodynamic abnormalities are widely found, including serum and RBC hypovolemia, NMH, and cerebral hypoperfusion. Vascular and endothelial abnormalities have been published by MERUK. However, none of these studies used research criteria for ME so the results may not be applicable to ME.

Some cardiologic features such as cardiac insufficiency, inverted T-waves and myofiber disarray have been reported in CFS and recently added to by findings of reduced Q-value. This has led clinician and researcher Dr. Paul Cheney to posit that CFS is form of partially compensated cardiomyopathy in which [[orthostatic intolerance]] and rapid fatiguability are secondary protective mechanisms. Due to the heterogeneity of the population, a single cause is unlikely, but one-third of people with ME have abnormalities when tested with Holter monitors.

==Causes==

Although risk factors for myalgic encephalomyelitis have been identified, no single definitive virus has been found in all cases, which has led to the claim that ME is a common end path of a variety of infectious insults.<ref>[http://via.library.depaul.edu/csh_etd/117/ Onset Patterns of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis: A Mixed Method Approach - Meredyth Evans - DePaul University]</ref><ref>[http://me-pedia.org/wiki/Vagus_nerve_infection_hypothesis Vagus nerve infection hypothesis - MEpedia]</ref><ref>[http://www.clevelandclinicmeded.com/online/casebased/decisionmaking/chronic-fatigue/case3.htm Chronic Fatigue Syndrome - Cleveland Clinic]</ref><ref>[https://www.ncbi.nlm.nih.gov/pubmed/26475444/ Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is associated with pandemic influenza infection, but not with an adjuvanted pandemic influenza vaccine. - PubMed]</ref> It is still possible ME involves some combination of both environmental and genetic factors. Various theories try to combine the known data into plausible explanations.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/26604026 Myalgic encephalomyelitis, chronic fatigue syndrome: An infectious disease. Myalgic encephalomyelitis, chronic fatigue syndrome: An infectious disease. RA Underhill - PubMed]</ref><ref>[http://www.nature.com/tp/journal/v6/n2/full/tp2015208a.html Genome-wide association analysis identifies genetic variations in subjects with myalgic encephalomyelitis/chronic fatigue syndrome]</ref> Although most accept an infectious explanation, several theories suggest that ME is an inappropriate immune response to an underlying condition, a theory bolstered by the observation that there is sometimes a family history of autoimmune disease.<ref>[https://www.facebook.com/permalink.php?story_fbid=564532390371988&id=564526123705948 Klimas ME/CFS Genes Study - Face Book - Video]</ref> There is also a shift from the [[Th1]] type of helper [[T cell]]s, which fight infection, to the [[Th2]] type, which are more active in allergy and more likely to attack the body.<ref>[http://www.sciencedirect.com/science/article/pii/S1043466614006024 Cytokine expression provides clues to the pathophysiology of Gulf War illness and myalgic encephalomyelitis - ScienceDirect]</ref><ref>[http://www.m-hikari.com/bmgt/bmgt2014/bmgt1-4-2014/hardcastleBMGT1-4-2014.pdf Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and the Potential Role of T Cells - Biological Markers and Guided Therapy, Vol. 1, 2014, no. 1, 25 -38 - PDF]</ref>

===Viral cause===
Other theories describe ME as an immune response to a chronic infection. The association between ME and the [[Coxsackie B]], [[HHV-6]], and [[HHV-7]] viruses<ref>[https://www.ncbi.nlm.nih.gov/pubmed/2841461 Coxsackie B viruses and myalgic encephalomyelitis.]</ref><ref>[http://solvecfs.org/ramsay-research-team-5-the-potential-role-of-hhv-6-in-mecfs/ Ramsay Research Team 5 – The Potential Role of HHV-6 in ME/CFS]</ref> <ref>[https://www.ncbi.nlm.nih.gov/pubmed/22927850 Association of active human herpesvirus-6, -7 and parvovirus b19 infection with clinical outcomes in patients with myalgic encephalomyelitis/chronic fatigue syndrome.]</ref> suggests a potential viral contribution in at least some individuals. Others believe ME may sometimes result from a chronic infection with spirochetal bacteria, such as [[Lyme disease]]. Another bacterium that has been implicated in ME is [[Chlamydia pneumoniae]].<ref>[http://med.stanford.edu/chronicfatiguesyndrome/infections/chlamydia/chlamydia-experts.html Chlamydia Pneumoniae - Stanford Myalgic Encephalomyelitis/Chronic Fatigue syndrome Initiative]</ref> Protein findings relating to several infections have seen found in the oligoclonal bands ME patients.<ref>[http://www.nytimes.com/health/guides/test/csf-oligoclonal-banding/overview.html CSF Oligoclonal Banding - NY Times]</ref>

The [[Vagus nerve infection hypothesis]] accounts for why so many different viral onsets could be responsible. The Vagus nerve runs from the brain stem and throughout the body and has an impact on many body systems.

==Treatments==
There is no known cure for ME. Treatments for sleep problems, headaches and pain are utilized by some doctors for some patients although these are treating symptoms and not ME itself. Success of treating symptoms of ME is not well researched or documented.

[[Ampligen]] (Approved for ME/CFS in [[Argentina]]) and [[Rituximab]] are being trialled.

==Epidemiology==

ME has been found world-wide, in at least 63 epidemics documented in published papers from the 1930s to the 1980s.<ref>[http://www.hfme.org/methemedicalfacts.htm Myalgic Encephalomyelitis: The medical facts - What causes Myalgic Encephalomyelitis? Are there outbreaks of M.E.?]</ref> (See: [[List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks]].) Epidemics often occur in enclosed communities such as schools and hospitals.

As observed in many autoimmune disorders, ME is more common in females than males; the mean sex ratio is approxmately 2-3 females for every male.<ref>[http://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-014-0167-5 Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012 - BMC Medicine]</ref> In children the sex ratio is approximately equal.<ref>[https://www.ncbi.nlm.nih.gov/pubmed/26510728 Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is different in children compared to in adults: a study of UK and Dutch clinical cohorts. BMJ Open - PubMed]</ref>

== Learn more ==
*[[Pediatric]]

== References ==

[[Category:Diagnoses]]
[[Category:Disease names]]

Oxford criteria

2018-06-15T02:48:11Z

Jeshyr:/* Chronic fatigue syndrome */ Fixed Chronic fatigue link away from disambiguation page

The '''Oxford criteria''' are a set of criteria for the diagnosis [[Chronic Fatigue Syndrome]] published in 1991 by a group of psychiatrists. They identify two broad syndromes and are used primarily for research purposes.<ref>[http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs Symptoms and diagnosis of ME/CFS - ME Association]</ref> The Oxford criteria was used for [[PACE trial]] participation.<ref>[http://www.wolfson.qmul.ac.uk/current-projects/pace-trial#patients Pace Trial - Centre for Psychiatry - QMUL]</ref><ref>[http://www.meassociation.org.uk/2011/02/pace-study-trial-%e2%80%93-medical-research-council-uk-news-report-18-february-2011/ PACE study results – Medical Research Council (UK) news report, 18 February 2011 - ME Association]</ref>

==Authors==
[[Michael Sharpe]], [[Len Archard]], [[Jangu Banatvala]], [[Leszek Borysiewicz]], [https://en.wikipedia.org/wiki/Anthony_Clare Anthony Clare], [[Anthony David]], [[Richard Edwards]], [[Keith Hawton]], [[Harold Lambert]], [[Russell Lane]]

==Definition==

===Chronic fatigue syndrome===

* [[fatigue]] is the principal symptom: it is severe, disabling and affects physical and mental functioning; it should have been present for a minimum of 6 months during which it was present for more than 50% of the time.
* other symptoms may be present: particularly [[myalgia]], [[mood swings]] and [[sleep disturbance]]s.
* definite onset of symptoms, not life-long.
* exceptions: patients with established medical conditions known to produce [[Chronic fatigue (symptom)|chronic fatigue]]; also patients with a current diagnosis of [[schizophrenia]], [[manic depressive illness]], [[substance abuse]], [[eating disorder]] or proven organic brain disease.

===[[Post-infectious Fatigue Syndrome]] (PIFS)===

A sub-type of [[CFS]] which either follows an infection or is associated with a current infection (although whether such associated infection is of aetiological significance (i.e. whether it is the cause of the symptoms) is a topic for research).

To meet the research criteria for PIFS patients must:
* i. fulfil the criteria for CFS as defined above (i.e. the Oxford definition)
* ii. should also fulfil the following additional criteria:
* (a) There is definite evidence of infection at onset or presentation (a patient’s self-report is unlikely to be sufficiently reliable).
* (b) the syndrome is present for a minimum of 6 months after onset of infection.
* (c) the infection has been corroborated by laboratory evidence.

===PDF for Oxford Definition CFS and PIFS===

PDF: '''A report - chronic fatigue syndrome: guidelines for research''' - ''Journal of the Royal Society of Medicine'' - Volume 84 February 1991 118-121<ref>[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/ A report - chronic fatigue syndrome: guidelines for research Journal of the Royal Society of Medicine Volume 84 February 1991 118-121]</ref>

==Criticisms==
*[[How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?]] For every 15 patients selected under Oxford criteria, 14 will be false positives when compared to [[Canadian Consensus Criteria]]. The [[Pace trial]] and [[FINE trial]] used Oxford criteria.
*[[Post-exertional malaise]] is not a listed symptom. When this symptom is not mandatory, patients with [[Chronic Fatigue]] and not the grossly misnamed disease [[Chronic Fatigue Syndrome]] are swept into the study.<ref>[https://voat.co/v/CFS/comments/254402 Chronic Fatigue is NOT Chronic Fatigue Syndrome - VOAT]</ref>
*Depression is not an absolute exception for a possible cause of Chronic Fatigue (not to be confused with Chronic Fatigue Syndrome.) This allows for patients with depression to be misdiagnosed with [[CFS]].<ref>[http://arthritis.about.com/od/fatigue/f/chronicfatigue.htm Chronic Fatigue Versus Chronic Fatigue Syndrome - About.com HEALTH By: Carol Eustice]</ref>
*Many psychiatric disorders are not excluded. Although schizophrenia, substance abuse, bipolar disorder, eating disorders, and verified organic brain disorders are excluded from diagnosis in the Oxford criteria, anxiety disorders, depressive disorders, and hyperventilation can be included. This allows for a more heterogeneous patient sample which can render clinical study results indeterminate.<ref name="Njoku, 2016"/>

*'''US NIH Report Calls for UK Definition of ME/CFS to be Scrapped''' - ''The Argus Report'' By: Penny Swift.

:''Excerpt''
::The [https://en.wikipedia.org/wiki/National_Institutes_of_Health United States National Institutes of Health] (NIH) has issued a draft report that highlights the dire need for scientific research that will help find a cure for the millions of people suffering from myalgic encephalomyelitis/chronic fatigue syndrome ([[ME/CFS]]) worldwide. The report also highlights the fact that the decades-old UK Royal Society of Medicine’s '''Oxford criteria''' for ME/CFS are severely “flawed,” and that continuing to use these criteria may “cause harm.” Further, the NIH report says that the Royal Society definition should “be retired” and replaced with a single case definition agreed to by the ME/CFS community.<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>

* Dr [James Baraniuk] published in July 2017 [http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1353578?journalCode=rftg20 'Chronic fatigue syndrome prevalence is grossly overestimated using Oxford criteria compared to Centers for Disease Control (Fukuda) criteria in a U.S. population study'.]

==Learn more==
*2016, [http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/ AHRQ Evidence Review Changes Its Conclusions]

==See also==
*[[FINE trial]]
*[[PACE trial]]

==References==
<references>
<ref name="Njoku, 2016">{{citation
| author = [[Mary Gloria Njoku| Mary Gloria C. Njoku]]
| title = Myalgic, Encephalomyelitis/Chronic Fatigue Syndrome: History, Diagnostic Criteria and Prevalence
| type = ebook
| date = 2016
| ISBN = 978-1-4689-7326-6
}}</ref>
</references>

[[Category:Definitions]]

UK CFS/ME Research Collaborative

2018-06-15T02:46:33Z

Jeshyr:/* Criticism */ Fixed Chronic Fatigue link away from dis

The '''UK CFS/ME Research Collaborative''' (CMRC) is a UK group of researchers and [[ME/CFS]] patient groups led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> Its launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref>

Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]] and the [[Association of Young People with ME]].

In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership<ref>https://www.facebook.com/MEResearchUK/posts/1548614165183835:0</ref>.

A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].

== Aims ==
The collaborative was set up with the intention of:
*providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way,
*increasing awareness of M.E. within the research community,
*highlighting priorities for research funding to assist funders such as the [[Medical Research Council]]
*increasing funding for M.E. research.

==The Grand Challenge==
The [[Grand Challenge]] is a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E.

==Criticism==

The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref>

The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref>

The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism].

==Conference==
''{{main article|CFS/ME Research Collaborative Conference}}''

==Minutes==
*[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018]
*[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016]
*[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015]

==Executive Board - 2018==
(As per [[ME Association]] website.<ref>http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/</ref>)
===Executive board members:===
*Chair, Professor [[Stephen Holgate]], (University of Southampton)
*Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh)

*Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University),
*Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle),
*Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University),
*Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton),
*Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London),
*Professor [[Colin Smith]] (Functional Genomics, Brighton University),
*[[Sonya Chowdhury]], CEO, Action for M.E.
*Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]]
*Chris Macdonald/Craig Bullock (Arthritis Research UK),
*CMRC Patient Reference Group,
*Michael Dalrymple (MRC-Technology),
*Mark Edwards (Lay member with pharma/industry experience),<ref>https://uk.linkedin.com/in/edwardsmark2?</ref>
*Lars Erwig (Senior Director Discovery Medicine, GSK),
*Mark Jones (UCB Pharma),

===Official observers:===
*Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC),
*Dr [[Gabrielle Murphy]] (BACME),
*Representative from the [[National Institute for Health Research]] (NIHR).

==Executive Board - 2017==
*[[Stephen Holgate]] (Chair)
*[[Esther Crawley]] (Vice-Chair)
*[[Sonya Chowdhury]], CEO, Action for ME
*James Brodie – GWPharma
*Mike Dalrymple (MRCT)
*Mark Edwards – EMIG
*Mark J Edwards
*[[Zoe Gotts]], Northumbria University
*Neeha Isaar-Brown, [[Medical Research Council]]
*Mark Jones - UCB
*Claire Kidgell
*Paul Little, Southampton University
*[[Gabrielle Murphy]]
*Jen McKendrick
*[[Julia Newton]], Newcastle University
*Carmine Pariante
*Hugh Perry, Southampton University
*Chris Ponting
*[[Charles Shepherd]], [[ME Association]]
*Raliza Stoyanova
*Edward Sykes, [[Science Media Centre]]
*Allison Wallace, Wellcome Trust observer
*Des Walsh
*Mary-Jane Willow, [[Association of Young People with M.E.]]

==Online presence==
*[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]])

==Learn more==
*2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics: [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2)]
*2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof [[George Davey Smith]] on the [[Grand Challenge]]]
*2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative]
*2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative]

==See also==
*[[Grand Challenge]]

==References==
<references>
</references>
[[Category:Research initiatives]]
[[Category:British research initiatives]]

5-Hydroxytryptophan

2018-05-29T02:34:51Z

Jeshyr:Reworked into encyclopaedia style with headings, added some references

{{Cleanup | reason=Needs citations adding, rewording in encyclopedic style, and categorising | date=April 2018}}

'''5-Hydroxytryptophan''' (5-HTP) is a precursor to the neurotransmitter serotonin.<ref name=":1" />

==Theory==
The reaction that causes 5-HTP to become serotonin requires the action of the enzyme aromatic-L-amino-acid decarboxylase (AADC). [[Vitamin B6|Vitamin B<sub>6</sub>]] is also required as a cofactor.<ref name=":1" /> The same enzyme catalyzes a number of other reactions,<ref name=":1">{{cite web|title=AADC|url=http://www.hmdb.ca/proteins/HMDBP00278|website=Human Metabolome database|accessdate=1 May 2018|date=|last=|first=|archive-url=|archive-date=|dead-url=}}</ref> including:

* L-DOPA to [[dopamine]]
* L-[[phenylalanine]] to phenethylamine
* L-[[tyrosine]] to tyramine
* L-histidine to [[histamine]]
* L-[[tryptophan]] to tryptamine

5-HTP has been shown to increase serotonin levels in the central nervous system.<ref>{{Cite journal|last=Turner|first=Erick H|last2=Loftis|first2=Jennifer M|last3=Blackwell|first3=Aaron D|date=2006|title=Serotonin a la carte: Supplementation with the serotonin precursor5-hydroxytryptophan|url=https://escholarship.org/uc/item/58h866d5|journal=Pharmacology & Therapeutics|volume=109|issue=3|via=}}</ref>

==Evidence==
Reports about serotonin levels in ME/CFS patients are mixed. One study hypothesized, based off of their findings on tryptophan, that ME/CFS patients fell into two groups: a group with high brain serotonin, and a group with normal serotonin.<ref name=":0">{{Cite journal|last=Badawy AAB|first=AAB|last2=Morgan|first2=CJ|last3=Llewelyn|first3=MB|last4=Albuquerque|first4=SRJ|last5=Farmer|first5=A|date=2005|title=Heterogeneity of serum tryptophan concentration and availability to the brain in patients with the chronic fatigue syndrome.|url=https://www.ncbi.nlm.nih.gov/pubmed/15982993?dopt=Abstract|journal=Journal of Psychopharmacology|volume=19|issue=4|pages=385–391|via=}}</ref> Multiple studies have found high, low, or normal serotonin, due either to different diagnostic criteria or ME/CFS subgroups.<ref name=":0" />

==Risks and safety==
Because 5-HTP increases brain serotonin, users are at risk for [https://en.wikipedia.org/wiki/Serotonin_syndrome serotonin syndrome] if they also take other medications which increase brain serotonin,<ref name="webmd">{{cite web|title=5-HTP Uses, Side effects, Interactions, Doses, and Warnings|url=https://www.webmd.com/vitamins/ai/ingredientmono-794/5-htp|website=WebMD|accessdate=29 May 2018|date=|last=|first=|archive-url=|archive-date=|dead-url=}}</ref>. Medications which come under this category and which are commonly taken be ME/CFS patients include:
* Anti-depressant drugs
* Dextromethorphan (Robitussin DM, and others)
* Tramadol (Ultram)
Other medications, including other supplements, may also increase brain serotonin - make sure you tell your pharmacist and your doctor if you are taking 5-HTP.

==Costs and availability==

==Learn more==
*[https://en.wikipedia.org/wiki/5-Hydroxytryptophan Wikipedia - 5-Hydroxytryptophan]

==See also==
*[[Serotonin]]

==References==
<references />

[[Category:Amino acids]]
[[Category:Potential treatments]]
[[Category:Supplements]]

Millions Missing protests

2018-05-27T08:04:30Z

Jeshyr:Updating intros for each year's photos

[[File:MillionsMissing-1-330x330.png|right|The Millions Missing logo]]
The '''Millions Missing''' protests were first created in early 2016 by [[The MEAction Network]] with the first protests held in twelve cities around the world in May & June 2016, and further protests occurring at least yearly since. The protests originally took the form of an on-site physical protest where protestors placed empty pairs of shoes outside prominent government buildings, representing the millions of patients around the world, though some locations branched out from this format. Protest also occurred online so that homebound and bedridden patients could also participate.<ref>[http://millionsmissing.meaction.net/virtual/ Virtual protest]</ref>

==May 2018 Protests==
The Millions Missing protests were renewed for a third year running in May 2018, to coincide with ME Awareness Week. On this occasion, the number of protests were much larger, with actions in over 100 cities scheduled beforehand<ref>http://millionsmissing.meaction.net</ref> and over 300 visibility actions recorded worldwide<ref>https://mailchi.mp/meaction/millionsmissing-went-global-vj515u3wfz-2264657?e=</ref>. [https://www.meaction.net/reach/press-coverage/press-coverage-millionsmissing/ Press coverage] of the protests has become increasingly extensive, possibly in part due to the critical success of the [http://me-pedia.org/wiki/Unrest Unrest] documentary. Amongst the demands made by protesters were a significant increase in funding into the illness by the US National Institute of Health (NIH).<ref>https://www.meaction.net/2018/04/30/why-were-targeting-the-nih-for-millionsmissing/</ref>

===United States===
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Denver Photos from Denver]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Minneapolis Photos from Minneapolis]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Orlando Photos from Orlando]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Tucson Photos from Tucson]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Atlanta Photos from Atlanta]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/New-York-City Photos from New York]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Boston Photos from Boston]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Los-Angeles Photos from Los Angeles]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/San-Francisco Photos from San Francisco]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Burlington Photos from Burlington]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Rochester Photos from Rochester]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Washington-DC Photos from Washington, DC]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Seattle Photos from Seattle]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Morristown Photos from Morristown]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Rock-Spring Photos from Rock Spring]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Chicago Photos from Chicago]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Charter-Twp-of-Clinton-Detroit Photos from Detroit]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Eau-Claire Photos from Eau Claire]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Santa-Barbara- Photos from Santa Barbara]

===South America===
*[https://meaction.smugmug.com/MillionsMissing-2018/Mexico-City Photos from Mexico City, Mexico]

===Canada===
*[https://meaction.smugmug.com/MillionsMissing-2018/Ottawa Photos from Ottawa, Canada]
*[https://meaction.smugmug.com/MillionsMissing-2018/Toronto Photos from Toronto, Canada]

===United Kingdom===
*[http://me-pedia.org/wiki/Photos_from_Sheffield Photos from Sheffield, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Edinburgh Photos from Edinburgh, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Hull Photos from Hull, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/London Photos from London, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Sheffield Photos from Sheffield, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/St-Helens Photos from St Helens, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Liverpool Photos from Liverpool, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Bristol Photos from Bristol, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Southampton Photos from Southampton, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Newry Photos from Newry, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Manchester Photos from Manchester, UK]

===Europe===
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Bielefeld Photos from Bielefeld, Germany]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Göteburg Photos from Göteburg, Sweden]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Akureyri Photos from Akureyri, Iceland]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Stockholm Photos from Stockholm, Sweden]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Berlin Photos from Berlin, Germany]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Bilbao Photos from Bilbao, Spain]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Prague Photos from Prague, Czech Republic]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Châteaubourg Photos from Châteaubourg, France]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Odense Photos from Odense, Denmark]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Copenhagen Photos from Copenhagen, Denmark]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Helsinki Photos from Helsinki, Finland]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Tønsberg Photos from Tønsberg, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Stavanger Photos from Stavanger, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Geneva Photos from Geneva, Switzerland]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Mo-i-Rana Photos from Moi i Rana, Norway]

===Asia===
*[https://meaction.smugmug.com/MillionsMissing-2018/Tokyo Photos from Tokyo, Japan]

===Africa===
*[https://meaction.smugmug.com/MillionsMissing-2018/Accra Photos from Accra, Ghana]

===Australia/New Zealand===
*[https://meaction.smugmug.com/MillionsMissing-2018/Australia/Melbourne Photos from Melbourne, Australia]
*[https://meaction.smugmug.com/MillionsMissing-2018/Australia/Sydney Photos from Sydney, Australia]
*[https://meaction.smugmug.com/MillionsMissing-2018/New-Zealand/Hamilton Photos from Hamilton, New Zealand]
*[https://meaction.smugmug.com/MillionsMissing-2018/New-Zealand/Wellington Photos from Wellington, New Zealand]
*[https://meaction.smugmug.com/MillionsMissing-2018/New-Zealand/Auckland Photos from Aukland, New Zealand]
*[https://meaction.smugmug.com/MillionsMissing-2018/New-Zealand/Christchurch Photos from Christchurch, New Zealand]

===Other===
*[https://meaction.smugmug.com/MillionsMissing-2018/Virtual-Visibility-Actions Photographs from virtual visibility actions]

==May 2017 Protests==
The May 2017 Millions Missing protests were again arranged to coincide with ME Awareness Week. We took to the streets in 18 cities in seven countries to demand change. We asked for increased government funding for research, clinical trials, medical education and public awareness.

===United Kingdom===
*[https://meaction.smugmug.com/MillionsMissing-2017/Dublin-Ireland Photos from Dublin, Ireland]
*[https://meaction.smugmug.com/MillionsMissing-2017/Isle-of-Man-UK Photos from Isle of Man, UK]
*[https://meaction.smugmug.com/MillionsMissing-2017/Edinburgh-UK Photos from Edinburgh, UK]
*[https://meaction.smugmug.com/MillionsMissing-2017/Birmingham-UK Photos from Birmingham, UK]

===Europe===
*[https://meaction.smugmug.com/MillionsMissing-2017/Copenhagen-Denmark Photos from Copenhagen, Denmark]
*[https://meaction.smugmug.com/MillionsMissing-2017/Zwolle-Netherlands Photos from Zwolle, Netherlands]
*[https://meaction.smugmug.com/MillionsMissing-2017/Fredrikstad-Norway Photos from Fredrikstad, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2017/Oslo-Norway Photos from Oslo, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2017/Sandefjord-NO Photos from Sandefjord, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2017/Reykjavik-Iceland Photos from Reykjavik, Iceland]

===Australia===
*[https://meaction.smugmug.com/MillionsMissing-2017/Sydney Photos from Sydney, Australia]
*[https://meaction.smugmug.com/MillionsMissing-2017/Brisbane-Australia Photos from Brisbane, Australia]

==September 2016 protests==
On September 27th 2016, protests occurred in 24 cities around the world.

===United States===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/San-Francisco-CA Photos from San Francisco, CA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Washington-DC Photos from Washington, DC]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Lansing-MI Photos from Lansing, MI]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Seattle-WA Photos from Seattle, WA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Atlanta-GA Photos from Atlanta, GA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/New-York-NY Photos from New York, NY]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Morristown-NJ Photos from Mirristown, NJ]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Chicago-IL Photos from Chicago, IL]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Dallas-TX Photos from Dallas, TX]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Boston-MA Photos from Boston, MA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Northampton-MA Photos from Northampton, MA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Pittsburgh-PA Photos from Pittsburg, PA]

===Canada===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Canada/Toronto Photos from Toronto, Canada]

===United Kingdom===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/London Photos from London, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Belfast Photos from Belfast, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Bristol Photos from Bristol, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Cardiff Photos from Cardiff, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Nottingham Photos from Nottingham, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Oxford Photos from Oxford, UK]

===Europe===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Europe/Oslo-Norway Photos from Oslo, Norway]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Europe/Hamburg-Germany Photos from Hamburg, Germany]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Europe/The-Hague Photos from The Hague, Netherlands]

===Australia===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Australia/Melbourne Photos from Melbourne, Australia]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Australia/Other Photos from Perth, Australia]

==May 2016 protests==
[[File:Shoes-laid-out-768x574.png|center|Millions Missing protest at the US Department of Health and Human Services in Washington DC on 25th May 2016]]
The protests took place simultaneously on 25th May 2016 in 12 locations all over the world<ref>http://www.meaction.net/2016/05/26/millionsmissing-protest-in-twelve-locations-all-over-the-world/</ref>, with the Belfast (Northern Ireland) protest taking place on 16th June.

The protestors made specific demands including increased research funding and clinical trials.<ref>[http://millionsmissing.meaction.net/protest-demands/ Protest demands]</ref>

===United States===

*[https://meaction.smugmug.com/Millions-Missing/MillionsMissing-DC/ Photos from Washington D.C.]
*[https://meaction.smugmug.com/Millions-Missing/Atlanta/ Photos from Atlanta, Georgia]
*[https://meaction.smugmug.com/Millions-Missing/Boston/ Photos from Boston, Massachusetts]
*[https://meaction.smugmug.com/Millions-Missing/Dallas/ Photos from Dallas, Texas]
*[https://meaction.smugmug.com/Millions-Missing/San-Francisco/ Photos from San Francisco, California]
*[https://meaction.smugmug.com/Millions-Missing/Seattle/ Photos from Seattle, Washington]

===Canada===

*[https://meaction.smugmug.com/Millions-Missing/Canada/i-kszjPCG Photos from Ottawa]

===Europe===

*[https://meaction.smugmug.com/Millions-Missing/London/ Photos from London, UK]
*[https://meaction.smugmug.com/Millions-Missing/Bergen-Norway/ Photos from Bergen, Norway]
*[https://meaction.smugmug.com/Millions-Missing/Netherlands/i-W24D8Pc Photos from Netherlands]

===Australia===

*[https://meaction.smugmug.com/Millions-Missing/Melbourne-Australia/ Photos from Melbourne]

===Other===
*[https://meaction.smugmug.com/Millions-Missing/Virtual Photos from online virtual protest]

==Online presence==

*[http://millionsmissing.meaction.net/ Website]
*[http://facebook.com/meactnet Facebook]
*[http://twitter.com/meactnet Twitter] (and the hashtag [https://twitter.com/search?q=%23millionsmissing&src=typd #millionsmissing])
*[https://www.instagram.com/millionsmissing/ Instagram]

==Learn more==

*[https://www.meaction.net/reach/press-coverage/press-coverage-millionsmissing/ Press coverage of Millions Missing events]
*2016, [http://www.meaction.net/2016/08/05/desalvo-progress/ Activists Meet With US Assistant Secretary of Health DeSalvo]
*2016, [http://www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html #MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest]
*2016, [http://www.meaction.net/2016/05/30/millionsmissing-in-the-news/ Millions Missing in the news]
*2016, [http://www.meaction.net/2016/06/20/n-ireland-chasing-competent-care-and-millionsmissing-protest/ Northern Ireland: Chasing competent care and #millionsmissing protest]
*2016, [http://www.meaction.net/2016/06/07/canada-open-letter-to-govt-from-family-of-millionsmissing/ Canada: Open letter to government from family of #millionsmissing]
*2016, [http://www.meaction.net/2016/06/06/millionsmissing-meetings/ Millions Missing meets with government officials]
*2016, [http://www.mecfsnsw.org.au/awareness/millionsmissing-largest-protest/ MillionsMissing holds largest ever protest for ME/CFS]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-of-millionsmissing-terri-wilder/ Speeches from the front lines of #millionsmissing: Terri Wilder]
*2016, [http://www.meaction.net/2016/06/02/speeches-from-the-front-lines-of-millionsmissing-sonya-heller-irey/ Speeches from the front lines of #millionsmissing: Sonya Heller Irey]
*2016, [http://www.meaction.net/2016/06/01/speeches-from-the-front-lines-of-millionsmissing-carol-head/ Speeches from the front lines of #millionsmissing: Carol Head]
*2016, [http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ Speeches from the front lines of #millionsmissing: LA Cooper]
*2016, [http://www.meaction.net/2016/05/28/speeches-from-the-front-lines-of-millionsmissing-ryan-prior/ Speeches from the front lines of #millionsmissing: Ryan Prior]
*2016, [http://www.meaction.net/2016/05/27/speeches-from-the-front-lines-of-millionsmissing-jennifer-brea/ Speeches from the front lines of #millionsmissing: Jennifer Brea]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-ron-davis/ Speeches from the front lines of #millionsmissing: Ronald Davis, Stanford University]
*2016, [https://www.youtube.com/watch?v=vde2sOzwDTM Leonard Jason's comments at Sept. 27th, 2016 #millionsmissing protest in Chicago]
*2016, [http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/ US Millions Missing protestors to meet with DeSalvo at HHS]
*2016, [http://microbediscovery.org/2016/06/08/mecfs-community-takes-meaction/ THE #MILLIONSMISSING WITH ME/CFS ARE GETTING ORGANISED!]
*2016, [http://millionsmissing.meaction.net/press/press-release/ US press release]
*2016, [https://www.relevantnow.com/stories/sneakbee/HwCAoJNAQb8 UK press release]
*2016, [http://www.meaction.net/2016/04/24/first-millionsmissing-meeting/ Updates from the first Millions Missing meeting]

==References==
<references />

[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Millions Missing protests

2018-05-26T12:54:48Z

Jeshyr:Rearrange page to reverse chronological order, expand intro, added all photo locations available on smugmug

[[File:MillionsMissing-1-330x330.png|right|The Millions Missing logo]]
The '''Millions Missing''' protests were first created in early 2016 by [[The MEAction Network]] with the first protests held in twelve cities around the world in May & June 2016, and further protests occurring at least yearly since. The protests originally took the form of an on-site physical protest where protestors placed empty pairs of shoes outside prominent government buildings, representing the millions of patients around the world, though some locations branched out from this format. Protest also occurred online so that homebound and bedridden patients could also participate.<ref>[http://millionsmissing.meaction.net/virtual/ Virtual protest]</ref>

==May 2018 Protests==
The Millions Missing protests were renewed for a third year running in May 2018, to coincide with ME Awareness Week. On this occasion, the number of protests were much larger, with actions in over 100 cities scheduled beforehand<ref>http://millionsmissing.meaction.net</ref> and over 300 visibility actions recorded worldwide<ref>https://mailchi.mp/meaction/millionsmissing-went-global-vj515u3wfz-2264657?e=[UNIQID]</ref>. [https://www.meaction.net/reach/press-coverage/press-coverage-millionsmissing/ Press coverage] of the protests has become increasingly extensive, possibly in part due to the critical success of the [http://me-pedia.org/wiki/Unrest Unrest] documentary. Amongst the demands made by protesters were a significant increase in funding into the illness by the US National Institute of Health (NIH).<ref>https://www.meaction.net/2018/04/30/why-were-targeting-the-nih-for-millionsmissing/</ref>

===United States===
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Denver Photos from Denver]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Minneapolis Photos from Minneapolis]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Orlando Photos from Orlando]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Tucson Photos from Tucson]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Atlanta Photos from Atlanta]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/New-York-City Photos from New York]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Boston Photos from Boston]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Los-Angeles Photos from Los Angeles]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/San-Francisco Photos from San Francisco]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Burlington Photos from Burlington]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Rochester Photos from Rochester]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Washington-DC Photos from Washington, DC]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Seattle Photos from Seattle]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Morristown Photos from Morristown]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Rock-Spring Photos from Rock Spring]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Chicago Photos from Chicago]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Charter-Twp-of-Clinton-Detroit Photos from Detroit]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Eau-Claire Photos from Eau Claire]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-States/Santa-Barbara- Photos from Santa Barbara]

===South America===
*[https://meaction.smugmug.com/MillionsMissing-2018/Mexico-City Photos from Mexico City, Mexico]

===Canada===
*[https://meaction.smugmug.com/MillionsMissing-2018/Ottawa Photos from Ottawa, Canada]
*[https://meaction.smugmug.com/MillionsMissing-2018/Toronto Photos from Toronto, Canada]

===United Kingdom===
*[http://me-pedia.org/wiki/Photos_from_Sheffield Photos from Sheffield, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Edinburgh Photos from Edinburgh, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Hull Photos from Hull, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/London Photos from London, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Sheffield Photos from Sheffield, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/St-Helens Photos from St Helens, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Liverpool Photos from Liverpool, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Bristol Photos from Bristol, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Southampton Photos from Southampton, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Newry Photos from Newry, UK]
*[https://meaction.smugmug.com/MillionsMissing-2018/United-Kingdom/Manchester Photos from Manchester, UK]

===Europe===
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Bielefeld Photos from Bielefeld, Germany]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Göteburg Photos from Göteburg, Sweden]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Akureyri Photos from Akureyri, Iceland]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Stockholm Photos from Stockholm, Sweden]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Berlin Photos from Berlin, Germany]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Bilbao Photos from Bilbao, Spain]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Prague Photos from Prague, Czech Republic]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Châteaubourg Photos from Châteaubourg, France]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Odense Photos from Odense, Denmark]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Copenhagen Photos from Copenhagen, Denmark]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Helsinki Photos from Helsinki, Finland]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Tønsberg Photos from Tønsberg, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Stavanger Photos from Stavanger, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Geneva Photos from Geneva, Switzerland]
*[https://meaction.smugmug.com/MillionsMissing-2018/Europe/Mo-i-Rana Photos from Moi i Rana, Norway]

===Asia===
*[https://meaction.smugmug.com/MillionsMissing-2018/Tokyo Photos from Tokyo, Japan]

===Africa===
*[https://meaction.smugmug.com/MillionsMissing-2018/Accra Photos from Accra, Ghana]

===Australia/New Zealand===
*[https://meaction.smugmug.com/MillionsMissing-2018/Australia/Melbourne Photos from Melbourne, Australia]
*[https://meaction.smugmug.com/MillionsMissing-2018/Australia/Sydney Photos from Sydney, Australia]
*[https://meaction.smugmug.com/MillionsMissing-2018/New-Zealand/Hamilton Photos from Hamilton, New Zealand]
*[https://meaction.smugmug.com/MillionsMissing-2018/New-Zealand/Wellington Photos from Wellington, New Zealand]
*[https://meaction.smugmug.com/MillionsMissing-2018/New-Zealand/Auckland Photos from Aukland, New Zealand]
*[https://meaction.smugmug.com/MillionsMissing-2018/New-Zealand/Christchurch Photos from Christchurch, New Zealand]

===Other===
*[https://meaction.smugmug.com/MillionsMissing-2018/Virtual-Visibility-Actions Photographs from virtual visibility actions]

==May 2017 Protests==
The May 2017 Millions Missing protests were again arranged to coincide with ME Awareness Week.

===United Kingdom===
*[https://meaction.smugmug.com/MillionsMissing-2017/Dublin-Ireland Photos from Dublin, Ireland]
*[https://meaction.smugmug.com/MillionsMissing-2017/Isle-of-Man-UK Photos from Isle of Man, UK]
*[https://meaction.smugmug.com/MillionsMissing-2017/Edinburgh-UK Photos from Edinburgh, UK]
*[https://meaction.smugmug.com/MillionsMissing-2017/Birmingham-UK Photos from Birmingham, UK]

===Europe===
*[https://meaction.smugmug.com/MillionsMissing-2017/Copenhagen-Denmark Photos from Copenhagen, Denmark]
*[https://meaction.smugmug.com/MillionsMissing-2017/Zwolle-Netherlands Photos from Zwolle, Netherlands]
*[https://meaction.smugmug.com/MillionsMissing-2017/Fredrikstad-Norway Photos from Fredrikstad, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2017/Oslo-Norway Photos from Oslo, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2017/Sandefjord-NO Photos from Sandefjord, Norway]
*[https://meaction.smugmug.com/MillionsMissing-2017/Reykjavik-Iceland Photos from Reykjavik, Iceland]

===Australia===
*[https://meaction.smugmug.com/MillionsMissing-2017/Sydney Photos from Sydney, Australia]
*[https://meaction.smugmug.com/MillionsMissing-2017/Brisbane-Australia Photos from Brisbane, Australia]

==September 2016 protests==
Larger protests in a larger number of cities around the world occurred on September 27th 2016.

===United States===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/San-Francisco-CA Photos from San Francisco, CA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Washington-DC Photos from Washington, DC]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Lansing-MI Photos from Lansing, MI]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Seattle-WA Photos from Seattle, WA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Atlanta-GA Photos from Atlanta, GA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/New-York-NY Photos from New York, NY]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Morristown-NJ Photos from Mirristown, NJ]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Chicago-IL Photos from Chicago, IL]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Dallas-TX Photos from Dallas, TX]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Boston-MA Photos from Boston, MA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Northampton-MA Photos from Northampton, MA]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-States/Pittsburgh-PA Photos from Pittsburg, PA]

===Canada===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Canada/Toronto Photos from Toronto, Canada]

===United Kingdom===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/London Photos from London, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Belfast Photos from Belfast, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Bristol Photos from Bristol, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Cardiff Photos from Cardiff, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Nottingham Photos from Nottingham, UK]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/United-Kingdom/Oxford Photos from Oxford, UK]

===Europe===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Europe/Oslo-Norway Photos from Oslo, Norway]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Europe/Hamburg-Germany Photos from Hamburg, Germany]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Europe/The-Hague Photos from The Hague, Netherlands]

===Australia===
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Australia/Melbourne Photos from Melbourne, Australia]
*[https://meaction.smugmug.com/MillionsMissing-SeptOct-2016/Australia/Other Photos from Perth, Australia]

==May 2016 protests==
[[File:Shoes-laid-out-768x574.png|center|Millions Missing protest at the US Department of Health and Human Services in Washington DC on 25th May 2016]]
The protests took place simultaneously on 25th May 2016<ref>[http://www.meaction.net/2016/05/26/millionsmissing-protest-in-twelve-locations-all-over-the-world/ Millions Missing protests in 12 locations all over the world]</ref>, with the Belfast (Northern Ireland) protest taking place on 16th June.

The protestors made specific demands including increased research funding and clinical trials.<ref>[http://millionsmissing.meaction.net/protest-demands/ Protest demands]</ref>

===United States===

*[https://meaction.smugmug.com/Millions-Missing/MillionsMissing-DC/ Photos from Washington D.C.]
*[https://meaction.smugmug.com/Millions-Missing/Atlanta/ Photos from Atlanta, Georgia]
*[https://meaction.smugmug.com/Millions-Missing/Boston/ Photos from Boston, Massachusetts]
*[https://meaction.smugmug.com/Millions-Missing/Dallas/ Photos from Dallas, Texas]
*[https://meaction.smugmug.com/Millions-Missing/San-Francisco/ Photos from San Francisco, California]
*[https://meaction.smugmug.com/Millions-Missing/Seattle/ Photos from Seattle, Washington]

===Canada===

*[https://meaction.smugmug.com/Millions-Missing/Canada/i-kszjPCG Photos from Ottawa]

===Europe===

*[https://meaction.smugmug.com/Millions-Missing/London/ Photos from London, UK]
*[https://meaction.smugmug.com/Millions-Missing/Bergen-Norway/ Photos from Bergen, Norway]
*[https://meaction.smugmug.com/Millions-Missing/Netherlands/i-W24D8Pc Photos from Netherlands]

===Australia===

*[https://meaction.smugmug.com/Millions-Missing/Melbourne-Australia/ Photos from Melbourne]

===Other===
*[https://meaction.smugmug.com/Millions-Missing/Virtual Photos from online virtual protest]

==Origin of the Millions Missing name==

==Online presence==

*[http://millionsmissing.meaction.net/ Website]
*[http://fb.com/meactnet Facebook]
*[http://twitter.com/meactnet Twitter] (and the hashtag [https://twitter.com/search?q=%23millionsmissing&src=typd #millionsmissing])
*[https://www.instagram.com/millionsmissing/ Instagram]

==Learn more==

*2016, [http://www.meaction.net/2016/08/05/desalvo-progress/ Activists Meet With US Assistant Secretary of Health DeSalvo]
*2016, [http://www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html #MillionsMissing: Sea of empty shoes left outside Department of Health in global ME protest]
*2016, [http://www.meaction.net/2016/05/30/millionsmissing-in-the-news/ Millions Missing in the news]
*2016, [http://www.meaction.net/2016/06/20/n-ireland-chasing-competent-care-and-millionsmissing-protest/ Northern Ireland: Chasing competent care and #millionsmissing protest]
*2016, [http://www.meaction.net/2016/06/07/canada-open-letter-to-govt-from-family-of-millionsmissing/ Canada: Open letter to government from family of #millionsmissing]
*2016, [http://www.meaction.net/2016/06/06/millionsmissing-meetings/ Millions Missing meets with government officials]
*2016, [http://www.mecfsnsw.org.au/awareness/millionsmissing-largest-protest/ MillionsMissing holds largest ever protest for ME/CFS]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-of-millionsmissing-terri-wilder/ Speeches from the front lines of #millionsmissing: Terri Wilder]
*2016, [http://www.meaction.net/2016/06/02/speeches-from-the-front-lines-of-millionsmissing-sonya-heller-irey/ Speeches from the front lines of #millionsmissing: Sonya Heller Irey]
*2016, [http://www.meaction.net/2016/06/01/speeches-from-the-front-lines-of-millionsmissing-carol-head/ Speeches from the front lines of #millionsmissing: Carol Head]
*2016, [http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ Speeches from the front lines of #millionsmissing: LA Cooper]
*2016, [http://www.meaction.net/2016/05/28/speeches-from-the-front-lines-of-millionsmissing-ryan-prior/ Speeches from the front lines of #millionsmissing: Ryan Prior]
*2016, [http://www.meaction.net/2016/05/27/speeches-from-the-front-lines-of-millionsmissing-jennifer-brea/ Speeches from the front lines of #millionsmissing: Jennifer Brea]
*2016, [http://www.meaction.net/2016/05/26/speeches-from-the-front-lines-ron-davis/ Speeches from the front lines of #millionsmissing: Ronald Davis, Stanford University]
*2016, [https://www.youtube.com/watch?v=vde2sOzwDTM Leonard Jason's comments at Sept. 27th, 2016 #millionsmissing protest in Chicago]
*2016, [http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/ US Millions Missing protestors to meet with DeSalvo at HHS]
*2016, [http://microbediscovery.org/2016/06/08/mecfs-community-takes-meaction/ THE #MILLIONSMISSING WITH ME/CFS ARE GETTING ORGANISED!]
*2016, [http://millionsmissing.meaction.net/press/press-release/ US press release]
*2016, [https://www.relevantnow.com/stories/sneakbee/HwCAoJNAQb8 UK press release]
*2016, [http://www.meaction.net/2016/04/24/first-millionsmissing-meeting/ Updates from the first Millions Missing meeting]

==References==
<references />

[[Category:Advocacy and fundraising initiatives]]
[[Category:Protests]]

Icelandic disease

2018-05-25T08:37:09Z

Jeshyr:Redirect to the outbreak itself since we have no disease page for this one. It's more useful than nothing.

#redirect [[1948-49 Akureyri outbreak]]

Portal:History and People/Intro

2018-05-25T08:17:26Z

Jeshyr:Fixed linking I just broke

[[Myalgic encephalomyelitis]] (ME), a disease that occurs both sporadically and as cluster [[outbreaks]], was first documented [[Los_Angeles_atypical_polio_outbreak|in Los Angeles in 1934]]. Since, there have been dozens of outbreaks recorded in the medical literature, most notably the [[1948-49_Akureyri_outbreak|1948-49 Akureyri, Iceland outbreak]], [[1955_Royal_Free_Hospital_outbreak|1955 Royal Free Hospital Outbreak]] in London and the [[1984_Incline_Village_chronic_fatigue_syndrome_outbreak|1984 outbreak in Incline Village, Nevada]]. The disease's existence almost certainly predates 1934, and may have been unrecognized for centuries or misdiagnosed as [[hysteria]], [[neurasthenia]], and later, [[conversion disorder]].

Myalgic encephalomyelitis was first known as atypical polio and later called "[[Icelandic disease]]" until it was officially named myalgic encephalomyelitis following the 1955 London outbreak. [https://en.wikipedia.org/wiki/History_of_chronic_fatigue_syndrome#International_classifications ME was recognized] as a neurological disease by the [[World Health Organization]] in 1969. Following the 1984 outbreak in Nevada, it was renamed and recharacterized by the [[Centers for Disease Control]] as "[[Chronic Fatigue Syndrome]]."

In 2015, the US [[Institute of Medicine]], based on a review of several decades of research, created a [[Systemic_Exertion_Intolerance_Disease#Diagnostic_Criteria|new definition]] of the disease and proposed a new name: [[Systemic exertion intolerance disease]]. Patient advocacy and a renewed interest in the disease among clinicians and scientists have led many new research groups to join the field in recent years, prompting several new discoveries and promising treatments to be tested via clinical trials. ('''[[Important events timeline|more]]...''')

Portal:History and People/Intro

2018-05-25T08:14:40Z

Jeshyr:Fixed WHO recognition date from 1970 to 1969 and linked reference

[[Myalgic encephalomyelitis]] (ME), a disease that occurs both sporadically and as cluster [[outbreaks]], was first documented [[Los_Angeles_atypical_polio_outbreak|in Los Angeles in 1934]]. Since, there have been dozens of outbreaks recorded in the medical literature, most notably the [[1948-49_Akureyri_outbreak|1948-49 Akureyri, Iceland outbreak]], [[1955_Royal_Free_Hospital_outbreak|1955 Royal Free Hospital Outbreak]] in London and the [[1984_Incline_Village_chronic_fatigue_syndrome_outbreak|1984 outbreak in Incline Village, Nevada]]. The disease's existence almost certainly predates 1934, and may have been unrecognized for centuries or misdiagnosed as [[hysteria]], [[neurasthenia]], and later, [[conversion disorder]].

Myalgic encephalomyelitis was first known as atypical polio and later called "[[Icelandic disease]]" until it was officially named myalgic encephalomyelitis following the 1955 London outbreak. [[https://en.wikipedia.org/wiki/History_of_chronic_fatigue_syndrome#International_classifications History of chronic fatigue syndrome - International Classifications|ME was recognized]] as a neurological disease by the [[World Health Organization]] in 1969. Following the 1984 outbreak in Nevada, it was renamed and recharacterized by the [[Centers for Disease Control]] as "[[Chronic Fatigue Syndrome]]."

In 2015, the US [[Institute of Medicine]], based on a review of several decades of research, created a [[Systemic_Exertion_Intolerance_Disease#Diagnostic_Criteria|new definition]] of the disease and proposed a new name: [[Systemic exertion intolerance disease]]. Patient advocacy and a renewed interest in the disease among clinicians and scientists have led many new research groups to join the field in recent years, prompting several new discoveries and promising treatments to be tested via clinical trials. ('''[[Important events timeline|more]]...''')

Portal:History and People/Intro

2018-05-25T08:08:38Z

Jeshyr:Redirected "more" link to go to Important events timeline

[[Myalgic encephalomyelitis]] (ME), a disease that occurs both sporadically and as cluster [[outbreaks]], was first documented [[Los_Angeles_atypical_polio_outbreak|in Los Angeles in 1934]]. Since, there have been dozens of outbreaks recorded in the medical literature, most notably the [[1948-49_Akureyri_outbreak|1948-49 Akureyri, Iceland outbreak]], [[1955_Royal_Free_Hospital_outbreak|1955 Royal Free Hospital Outbreak]] in London and the [[1984_Incline_Village_chronic_fatigue_syndrome_outbreak|1984 outbreak in Incline Village, Nevada]]. The disease's existence almost certainly predates 1934, and may have been unrecognized for centuries or misdiagnosed as [[hysteria]], [[neurasthenia]], and later, [[conversion disorder]].

Myalgic encephalomyelitis was first known as atypical polio and later called "[[Icelandic disease]]" until it was officially named myalgic encephalomyelitis following the 1955 London outbreak. ME was recognized as a neurological disease by the [[World Health Organization]] in 1970. Following the 1984 outbreak in Nevada, it was renamed and recharacterized by the [[Centers for Disease Control]] as "[[Chronic Fatigue Syndrome]]."

In 2015, the US [[Institute of Medicine]], based on a review of several decades of research, created a [[Systemic_Exertion_Intolerance_Disease#Diagnostic_Criteria|new definition]] of the disease and proposed a new name: [[Systemic exertion intolerance disease]]. Patient advocacy and a renewed interest in the disease among clinicians and scientists have led many new research groups to join the field in recent years, prompting several new discoveries and promising treatments to be tested via clinical trials. ('''[[Important events timeline|more]]...''')

Important events timeline

2018-05-25T08:03:50Z

Jeshyr:/* See also */ Removed History of myalgic encephalomyelitis and chronic fatigue syndrome page - now all that info is here

==Victorian Period==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1869 || || [[George Miller Beard]] coined the term "[[neurasthenia]]." He thought it was an especially American affliction of nervous exhaustion, affected men who were "brain workers" and women who advanced too far in their education.
|-
|?? || || [[Jean-Martin Charcot]] - [[hysteria]]. Many of his patients were suffering from [[epilepsy]]. Influence on [[Sigmund Freud]] and the concept of [[functional disorder]]s.
|}

== Early 20th century ==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1934 || || [[Atypical Polio]] - an [[outbreak]] at [[Los_Angeles_atypical_polio_outbreak|Los Angeles County Hospital]] of a disease "resembling poliomyelitis" was recorded.
|}

==1950s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1955 || || [[Royal Free Hospital outbreak]] in London, England, which led to the use of the name [[Myalgic encephalomyelitis]].
|}

==1960s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1969 || || [[Myalgic encephalomyelitis]] classified by the World Health Organization (WHO) as a neurological disease.
|}

==1970s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1975 || || Outbreak in Mercy San Juan Hospital, in a suburb of Sacramento, California, Unites States ([[1975 Sacramento outbreak]]).
|}

==1980s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1980 || || Outbreak in Ayrshire, Scotland ([[1980-81 Ayrshire outbreak]]).
|-
|1984 || || Disease outbreak in [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]] near Lake Tahoe in California, United States.
|-
|1984 || || Disease outbreak in Chapel Hill, North Carolina, United States([[1984 Chapel Hill outbreak]]).
|-
|1985 || || Disease outbreak in Lyndonville, New York, United States ([[1985 Lyndonville outbreak]]).
|-
|1988 || || First definition of [[Chronic fatigue syndrome]] produced, later updated in 1994.
|}

==1990s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1994 || || [[Chronic fatigue syndrome]] criteria update to the 1994 [[Fukuda criteria]].
|-
|1994 || September || Publication of the [[1994 National Task Force Report on CFS/PVFS/ME]] by [[Westcare UK]], notably the [[London criteria]]
|-
|}

==2000s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|2009 || || Publication of the [[Judy Mikovits]] study in ''[[Science]]'' claiming a link between [[Chronic fatigue syndrome]] and the [[XMRV]] retrovirus.
|-
|2009 || || Preliminary research published by Norwegian researchers proposes assessment of the use of cancer drug [[Rituximab]] to treat the disease.
|}

==2010s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|2011 || || The controversial British [[PACE trial]] is published in ''[[The Lancet]]'', recommending [[cognitive behavioral therapy]] and [[graded exercise therapy]] as treatments.
|-
|2011 || || The ''[[Science]]'' journal retracts the [[XMRV]] paper.
|-
|2015 || || The [[Institute of Medicine report]] is released: "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an illness", which reviewed thousands of articles, and concluded that "ME/CFS is a serious, chronic, complex and multisystem disease that frequently and dramatically limits the activities of affected patients" (p. 209). The report recommended new diagnostic criteria, and a new name for the condition: [[Systemic Exertion Intolerance Disease]] (SEID).
|-
|2015 || || [[Francis Collins]] announces the intent of the [[National Institutes of Health]] to take the disease more seriously.
|-
|2015 || || The [[Open Medicine Foundation]] announces its [[End ME/CFS Project]], led by [[Ronald Davis]], has support of three Nobel prize laureates.
|-
|2016 || || [[National Institutes of Health]], United States begins study of ME/CFS patient in their in-house Clinical Center in Bethesda
|}

==See also==
*[[Osler's Web]] by [[Hillary Johnson]]
*[[Thirty Years of Disdain]] by [[Mary Dimmock]]
*[[List of outbreaks]]
*[[ME and CFS in popular culture]]
*[[Notable studies]]

==References==
<references/>

[[Category:History]]

Important events timeline

2018-05-25T04:49:04Z

Jeshyr:Added WHO classification to 1969

==Victorian Period==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1869 || || [[George Miller Beard]] coined the term "[[neurasthenia]]." He thought it was an especially American affliction of nervous exhaustion, affected men who were "brain workers" and women who advanced too far in their education.
|-
|?? || || [[Jean-Martin Charcot]] - [[hysteria]]. Many of his patients were suffering from [[epilepsy]]. Influence on [[Sigmund Freud]] and the concept of [[functional disorder]]s.
|}

== Early 20th century ==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1934 || || [[Atypical Polio]] - an [[outbreak]] at [[Los_Angeles_atypical_polio_outbreak|Los Angeles County Hospital]] of a disease "resembling poliomyelitis" was recorded.
|}

==1950s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1955 || || [[Royal Free Hospital outbreak]] in London, England, which led to the use of the name [[Myalgic encephalomyelitis]].
|}

==1960s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1969 || || [[Myalgic encephalomyelitis]] classified by the World Health Organization (WHO) as a neurological disease.
|}

==1970s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1975 || || Outbreak in Mercy San Juan Hospital, in a suburb of Sacramento, California, Unites States ([[1975 Sacramento outbreak]]).
|}

==1980s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1980 || || Outbreak in Ayrshire, Scotland ([[1980-81 Ayrshire outbreak]]).
|-
|1984 || || Disease outbreak in [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]] near Lake Tahoe in California, United States.
|-
|1984 || || Disease outbreak in Chapel Hill, North Carolina, United States([[1984 Chapel Hill outbreak]]).
|-
|1985 || || Disease outbreak in Lyndonville, New York, United States ([[1985 Lyndonville outbreak]]).
|-
|1988 || || First definition of [[Chronic fatigue syndrome]] produced, later updated in 1994.
|}

==1990s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1994 || || [[Chronic fatigue syndrome]] criteria update to the 1994 [[Fukuda criteria]].
|-
|1994 || September || Publication of the [[1994 National Task Force Report on CFS/PVFS/ME]] by [[Westcare UK]], notably the [[London criteria]]
|-
|}

==2000s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|2009 || || Publication of the [[Judy Mikovits]] study in ''[[Science]]'' claiming a link between [[Chronic fatigue syndrome]] and the [[XMRV]] retrovirus.
|-
|2009 || || Preliminary research published by Norwegian researchers proposes assessment of the use of cancer drug [[Rituximab]] to treat the disease.
|}

==2010s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|2011 || || The controversial British [[PACE trial]] is published in ''[[The Lancet]]'', recommending [[cognitive behavioral therapy]] and [[graded exercise therapy]] as treatments.
|-
|2011 || || The ''[[Science]]'' journal retracts the [[XMRV]] paper.
|-
|2015 || || The [[Institute of Medicine report]] is released: "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an illness", which reviewed thousands of articles, and concluded that "ME/CFS is a serious, chronic, complex and multisystem disease that frequently and dramatically limits the activities of affected patients" (p. 209). The report recommended new diagnostic criteria, and a new name for the condition: [[Systemic Exertion Intolerance Disease]] (SEID).
|-
|2015 || || [[Francis Collins]] announces the intent of the [[National Institutes of Health]] to take the disease more seriously.
|-
|2015 || || The [[Open Medicine Foundation]] announces its [[End ME/CFS Project]], led by [[Ronald Davis]], has support of three Nobel prize laureates.
|-
|2016 || || [[National Institutes of Health]], United States begins study of ME/CFS patient in their in-house Clinical Center in Bethesda
|}

==See also==
*[[Osler's Web]] by [[Hillary Johnson]]
*[[Thirty Years of Disdain]] by [[Mary Dimmock]]
*[[List of outbreaks]]
*[[ME and CFS in popular culture]]
*[[Notable studies]]
*[[History of myalgic encephalomyelitis and chronic fatigue syndrome]]

==References==
<references/>

[[Category:History]]

Important events timeline

2018-05-25T04:42:09Z

Jeshyr:Added hysteria link to Jean-Martin Charcot

==Victorian Period==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1869 || || [[George Miller Beard]] coined the term "[[neurasthenia]]." He thought it was an especially American affliction of nervous exhaustion, affected men who were "brain workers" and women who advanced too far in their education.
|-
|?? || || [[Jean-Martin Charcot]] - [[hysteria]]. Many of his patients were suffering from [[epilepsy]]. Influence on [[Sigmund Freud]] and the concept of [[functional disorder]]s.
|}

== Early 20th century ==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1934 || || [[Atypical Polio]] - an [[outbreak]] at [[Los_Angeles_atypical_polio_outbreak|Los Angeles County Hospital]] of a disease "resembling poliomyelitis" was recorded.
|}

==1950s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1955 || || [[Royal Free Hospital outbreak]] in London, England, which led to the use of the name [[Myalgic Encephalomyelitis]].
|}

==1960s==

==1970s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1975 || || Outbreak in Mercy San Juan Hospital, in a suburb of Sacramento, California, Unites States ([[1975 Sacramento outbreak]]).
|}

==1980s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1980 || || Outbreak in Ayrshire, Scotland ([[1980-81 Ayrshire outbreak]]).
|-
|1984 || || Disease outbreak in [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]] near Lake Tahoe in California, United States.
|-
|1984 || || Disease outbreak in Chapel Hill, North Carolina, United States([[1984 Chapel Hill outbreak]]).
|-
|1985 || || Disease outbreak in Lyndonville, New York, United States ([[1985 Lyndonville outbreak]]).
|-
|1988 || || First definition of [[Chronic fatigue syndrome]] produced, later updated in 1994.
|}

==1990s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1994 || || [[Chronic fatigue syndrome]] criteria update to the 1994 [[Fukuda criteria]].
|-
|1994 || September || Publication of the [[1994 National Task Force Report on CFS/PVFS/ME]] by [[Westcare UK]], notably the [[London criteria]]
|-
|}

==2000s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|2009 || || Publication of the [[Judy Mikovits]] study in ''[[Science]]'' claiming a link between [[Chronic fatigue syndrome]] and the [[XMRV]] retrovirus.
|-
|2009 || || Preliminary research published by Norwegian researchers proposes assessment of the use of cancer drug [[Rituximab]] to treat the disease.
|}

==2010s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|2011 || || The controversial British [[PACE trial]] is published in ''[[The Lancet]]'', recommending [[cognitive behavioral therapy]] and [[graded exercise therapy]] as treatments.
|-
|2011 || || The ''[[Science]]'' journal retracts the [[XMRV]] paper.
|-
|2015 || || The [[Institute of Medicine report]] is released: "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an illness", which reviewed thousands of articles, and concluded that "ME/CFS is a serious, chronic, complex and multisystem disease that frequently and dramatically limits the activities of affected patients" (p. 209). The report recommended new diagnostic criteria, and a new name for the condition: [[Systemic Exertion Intolerance Disease]] (SEID).
|-
|2015 || || [[Francis Collins]] announces the intent of the [[National Institutes of Health]] to take the disease more seriously.
|-
|2015 || || The [[Open Medicine Foundation]] announces its [[End ME/CFS Project]], led by [[Ronald Davis]], has support of three Nobel prize laureates.
|-
|2016 || || [[National Institutes of Health]], United States begins study of ME/CFS patient in their in-house Clinical Center in Bethesda
|}

==See also==
*[[Osler's Web]] by [[Hillary Johnson]]
*[[Thirty Years of Disdain]] by [[Mary Dimmock]]
*[[List of outbreaks]]
*[[ME and CFS in popular culture]]
*[[Notable studies]]
*[[History of myalgic encephalomyelitis and chronic fatigue syndrome]]

==References==
<references/>

[[Category:History]]

MEpedia:Suggested tasks

2018-05-25T04:39:18Z

Jeshyr:Merging of two history pages completed - moved to completed section

This page lists suggestions for improvements or additions to MEpedia.

PLEASE if at all possible, create/edit a relevant article yourself (see [[How to contribute]]), as the editors of MEpedia are all sick and working hard to improve the content in particular areas - we need your help! But if you REALLY can't make the improvement yourself, click '''Edit''' below (next to the heading "Suggestions"), add your suggestion to the end, and then click '''Save page'''.

Please keep your suggestion as brief as possible (usually one line) and be sure to include web links to sources/citations (e.g., the published study, a source for a quote, etc.).

If you merely wish to keep track of your own goals on site (but for discoverability by others), you can instead add a subpage to your user page (add a "/" and subpage, e.g., [[User:Brettz9/To-dos]]) and then add the code <nowiki>[[Category:User to-dos]]</nowiki> to your subpage article. It will then show up at [[:Category:User to-dos]].

==Priority pages for expansion==
'''Science:''' [[Citric acid cycle]], [[Mitochondria]], [[Exercise]], [[Natural killer cell]], [[Central nervous system]], [[Nitric oxide hypothesis]], [[Brain]], [[Brain imaging]], [[Microbiome hypothesis]], [[Primer_for_journalists#Prognosis|Primer for journalists (''Prognosis'' section)]], [[PACE trial]]

=Suggestions - High Priority=
'''When a task is complete move it to the COMPLETED section at the bottom of the page'''

*Add photos of ALL the May (and Belfast in June) Millions Missing protests to the MM page http://me-pedia.org/wiki/Millions_Missing_protests
*Create a page for Lyrica/Pregabalin and add this talk by Alan Light https://www.youtube.com/watch?v=S3CmUJyVBbQ&feature=youtu.be&t=3m1s
*Make sure this study on relative quality of life is documented and cited, especially the chart http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421
*Add the Stats.org editorial & 7,000 word criticism to the PACE page :
**Make sure that all the specific significant criticisms they make are covered in the Criticism section if not already
**(''IN PROGRESS'') Include (and explain) this chart from article https://twitter.com/Katiissick/status/713080268756619264
*Categorize all uncategorized pages (list of uncategorized pages here: http://me-pedia.org/wiki/Special:UncategorizedPages)
* Add a [[Wikipedia:Portal:Contents/Portals|portal]] on Wikipedia for CFS or umbrella (e.g., auto-immune-related conditions), bringing more awareness and contributions on Wikipedia (also through subpages, such as "B cells and CFS"), and which we could reference here

=Suggestions - Five Minute Tasks=
'''When a task is complete move it to the COMPLETED section at the bottom of the page'''

*Add https://grants.nih.gov/grants/guide/notice-files/NOT-AI-16-046.html
*Add http://www.healthrising.org/blog/2016/04/06/immune-system-fatigue-brain-me-cfs-fibromyalia/
*Make sure MEpedia covers the GETSET study https://spoonseeker.com/2016/05/23/a-few-notes-on-getset/
*Add https://twitter.com/Firestormmer/status/734650703847784449
*Add http://www.freezepage.com/1374761286EFCHIYENBE
*Add http://www.healthrising.org/blog/2016/05/19/25-disease-chronic-fatigue-syndrome-mecfs-unique-many-people-homebound/
*Add http://www.meaction.net/2016/05/18/uk-plans-worlds-biggest-biomedical-mecfs-study/
*Find source and add https://twitter.com/Firestormmer/status/733001836186238976
*Add to ketogenic diet page under exogenous ketones https://ketosource.co.uk/exogenous-ketone-supplements-review/
*Add http://www.meassociation.org.uk/2016/05/remember-shine-the-spotlight-on-mecfs-research-and-management-dr-shepherd-recalls-highlights-of-burgess-hill-meeting-14-may-2016/
*Add http://medicalxpress.com/news/2016-05-chronic-fatigue-patients-suppress-emotions.html
*Add to ritux/b-cell pages http://forums.phoenixrising.me/index.php?threads/extended-b-cell-phenotype-in-patients-with-me-cfs-a-cross-sectional-study.41743/#post-674305
*Add http://www.meassociation.org.uk/2016/05/me-associations-contributions-towards-mitochondrial-muscle-research-in-mecfs-17-may-2016/
*Add new page for MEGA UK study https://www.actionforme.org.uk/news/mega-new-me-research-project/#.Vzn9sbBp4gk.twitter
*Add http://www.meaction.net/2016/05/15/brain-connectivity-problems-causing-signalling-problems/
*Add details of new Crawley study to her page, and mention AfME funding it, also mention that on AfME page http://forums.phoenixrising.me/index.php?threads/esther-crawley-paediatric-prevalence-study-funded-by-action-for-me.44622/#post-724857
*Add to MAGENTA page http://apps.who.int/trialsearch/Trial2.aspx?TrialID=ISRCTN23962803
*Add http://www.theestablishment.co/2016/05/13/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers/
*Add https://cfsremission.wordpress.com/2016/05/14/cortisol-cfs-and-microbiome/
*Add http://www.meassociation.org.uk/2016/05/ive-suffered-with-me-since-i-was-eight-and-the-way-im-treated-hasnt-changed-in-30-years-the-independent-12-may-2016/
*Add https://www.ncbi.nlm.nih.gov/pubmed/27165859
*Add http://phoenixrising.me/archives/28077
*Add http://www.meaction.net/2016/05/11/fluge-and-mellas-search-for-genetic-markers/
*Add http://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/
*Add to Ritux page https://twitter.com/Firestormmer/status/730399214686056448
*Add https://selfhacked.com/2016/05/11/21-proven-science-based-reasons-magnesium-amazing-including-drawbacks/
*Add http://scienmag.com/further-clues-in-the-fight-against-chronic-fatigue-syndrome/
*Add http://www.eurekalert.org/pub_releases/2016-05/bawh-etg050616.php
*Add https://www.ncbi.nlm.nih.gov/pubmed/9771781
*Add http://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/
*Add http://www.healthrising.org/blog/2016/05/09/activated-mast-cell-activation-syndrome-mecfsfm/
*Add https://www.ncbi.nlm.nih.gov/pubmed/9745235
*Add http://healthy-magazines.com/chronic-fatigue-syndrome-mecfs-uncovering-mystery/
*Add https://www.researchgate.net/publication/283476227_Psychogenic_explanations_of_physical_illness_Time_to_examine_the_evidence
*Add http://chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract
*Add http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0873-1
*Add http://www.meaction.net/2016/05/05/progressive-brain-changes-in-patients-with-chronic-fatigue-syndrome-are-our-brains-starved-of-oxygen/
*Add http://www.meactionuk.org.uk/Response-to-Dr-Stuart-Spencer.htm
*Add https://selfhacked.com/2016/05/03/mmp9/
*Add http://forums.phoenixrising.me/index.php?threads/norwegian-professor-in-biology-supportive-of-pace.44177/page-5#post-721234
*Add to NIH page http://www.occupycfs.com/2016/05/03/staying-the-course-to-where/
*Add http://www.huffingtonpost.com/-stephanie-land/patients-with-chronic-ill_b_9818754.html
*Add https://www.ncbi.nlm.nih.gov/pubmed/9292244
*Add https://tipsforme.wordpress.com/2015/10/19/resource-walking-problems/?utm_content=bufferb75ff&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
*Add https://www.researchgate.net/publication/11813965_What_is_Chronic_Fatigue_Syndrome_Heterogeneity_Within_an_International_Multicentre_Study
*Add http://www.meaction.net/2016/05/01/patients-and-professor-publish-biomedical-mecfs-paper/
*Add https://www.ncbi.nlm.nih.gov/pubmed/15784798
*Add http://www.healthrising.org/blog/2016/04/24/nath-nih-chronic-fatigue-syndrome-study-push-back/
*Add https://corsius.wordpress.com/2016/04/23/biased-research-on-cfs/
*Add http://www.itv.com/news/tyne-tees/update/2013-05-08/teenager-with-m-e-says-shes-accused-of-exaggerating-her-illness/
*Add http://www.healthrising.org/forums/threads/can-simple-blood-tests-help-to-identify-chronic-fatigue-syndrome-me-cfs.4228/
*Add http://chi.sagepub.com/content/early/2016/04/22/1742395316644770.long
*Add http://onlinelibrary.wiley.com/doi/10.1002/jmri.25283/full
*Add https://www.ncbi.nlm.nih.gov/pubmed/9018051
*Add http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598
*Add http://www.meaction.net/2016/04/27/nih-study-will-bring-new-technology-and-expertise-to-mecfs/
*Add https://www.ncbi.nlm.nih.gov/pubmed/27114901
*Add quote to IOM report page and patient mental health pages https://twitter.com/ollie72/status/724948447024009217?cn=cmV0d2VldA%3D%3D&refsrc=email
*Add https://www.ncbi.nlm.nih.gov/pubmed/27116645
*Add https://meagenda.wordpress.com/2009/10/27/dr-nigel-speight-resigns-from-children-and-young-persons-organisation-ayme/
*Add to MS/Ritux pages http://www.gene.com/media/press-releases/14609/2015-10-08/genentechs-ocrelizumab-first-investigati
*Add http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0859-z
*Add http://www.mdpi.com/2075-4418/6/2/16
*Add https://www.ncbi.nlm.nih.gov/pubmed/27095328
*Add http://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC486360/?page=8
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350897/pdf/bmj00539-0053d.pdf
*Add http://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-016-1497-z
*Add https://twitter.com/LouCorsius/status/719993266876391424/photo/1
*Make sure this article is linked to on the ME page, maybe elsewhere too https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf
*Add this study on cytokines to the cytokines page (and pages for the specific ones affected) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC368231/pdf/cdli00002-0112.pdf
*Add this 1994 article to the Chronic Fatigue Syndrome page https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1615008/pdf/amjph00453-0124.pdf
*Add this article to the e-coli page https://cfsremission.wordpress.com/2016/03/29/the-care-and-feeding-of-e-coli-probiotics/
*Add this article to the autoimmunity page http://cellfatigue.blogspot.co.uk/2016/03/autoimmunity-and-self-tolerance-in-mecfs.html
*Make sure this study is mentioned on the ketogenic diet page https://www.ncbi.nlm.nih.gov/pubmed/24847102
*Create a basic outline page about this UK ME support group http://www.mesupport.co.uk/index.php?page=anniversary-statement You can copy-paste an outline from the outlines page http://me-pedia.org/wiki/MEpedia_article_outlines#Patient_Group.2FCharity
*Add new simple protocol article to Ken Lassesen's hypothesis page (probiotics) https://cfsremission.wordpress.com/2016/03/31/best-two-probiotics-to-start-probiotic-approach/ and also add this https://cfsremission.wordpress.com/2016/03/27/pictures-of-cfs/
*Add this interesting anecdote to the MS page http://www.cortjohnson.org/forums/threads/a-chronic-fatigue-syndrome-pots-patient-responds-to-a-multiple-sclerosis-drug-what-does-it-mean.4028/
*Make sure this video about Klimas' gene study is included on her page, and wherever the study is covered (perhaps its own page needed?) https://sharkmedia.nova.edu/media/ME+CFS+Genes+Study/1_06vh90p0
*Add 2006 announcement of fatigue service at Barts UK led by Peter White to White's page, and Shirley Conran page and Maurice Murphy pages. https://web.archive.org/web/20070522194545/http://www.bartsandthelondon.nhs.uk/formedia/press/release.asp?id=1216
*Add ME Advocacy article to NIH study page under Learn more http://www.meadvocacy.org/nih_sidesteps_critical_problems_with_the_me_cfs_study
*Add Cort article to PACE page, Learn more section http://www.cortjohnson.org/forums/threads/pace-trial-gets-most-devastating-critique-yet.4003/#post-15641
*Add to MRI pages https://www.ncbi.nlm.nih.gov/pubmed/8141020
*Add Guardian article to list of articles about ME http://www.theguardian.com/lifeandstyle/2016/apr/04/chronic-fatigue-syndrome-cfs-taken-seriously#comment-71789644 Maybe also to PACE page, and pages for Montoya, Hornig & Dimmock.
*Add study https://www.ncbi.nlm.nih.gov/pubmed/1282370
*Add study https://www.ncbi.nlm.nih.gov/pubmed/1446478
*Add study https://www.ncbi.nlm.nih.gov/pubmed/1337562
*Add NK study https://www.ncbi.nlm.nih.gov/pubmed/1287238
*Add this article to Cort Johnson page http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=28684
*Add http://carersfight.blogspot.co.uk/2015/12/the-pace-trial-concerns-raised-by.html
*Add https://m.facebook.com/photo.php?fbid=955820941179099&id=100002536068526&set=a.274636879297512.61710.100002536068526&source=57
*Add https://twitter.com/senseaboutsci/status/683616829923831808?s=09
*Add https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment
*Add http://simmaronresearch.com/2015/12/ian-lipkin-three-to-five-years-to-solve-chronic-fatigue-syndrome-mecfs/
*Add http://www.meassociation.org.uk/2015/12/plenty-of-new-blood-and-enthusiasm-at-the-uk-mecfs-biobank-23-december-2015/
*Add https://pubpeer.com/publications/22870204
*Add http://my.meaction.net/local_chapters/mepedia/forum_threads/4224?token=9408280d9eecf4e9b52677e3e5d6acd6e397162f#message_16831
*Add http://my.meaction.net/local_chapters/mepedia/forum_threads/4116?token=9408280d9eecf4e9b52677e3e5d6acd6e397162f#message_16842
*Add http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
*Add http://www.mrijournal.com/article/S0730-725X(15)00303-3/abstract
*Add https://dl.dropboxusercontent.com/u/23608059/PDW-re-theft.pdf
*Add https://twitter.com/LetsDoIt4ME/status/678983105865195520/photo/1
*Add https://twitter.com/bengoldacre/status/679228319234195456
*Add http://forums.phoenixrising.me/index.php?threads/peter-white-barts-comments-on-draft-nice-guidelines-insight-into-their-views.1239/
*Add http://www.investinme.org/InfoCentre-vaccines-popup-1.htm
*Add http://articles.latimes.com/1986-06-07/news/mn-9956_1_lake-tahoe
*Add https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf
*Add http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full
*Add http://www.cortjohnson.org/forums/threads/severely-ill-chronic-fatigue-syndrome-me-cfs-study-expanded.3432/
*Add https://twitter.com/postersandme/status/677469604348870657/photo/1
*Add http://www.qmul.ac.uk/media/news/items/smd/81841.html
*Add https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome
*Add https://twitter.com/TomKindlon/status/677173627532402688
*Add http://www.investinme.org/Article-419%20Professor%20Hooper%20Response%20to%20The%20Observer%20Newspaper%20Aug2011.htmhttp://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
*Add to Walitt and NIH study pages http://thoughtsaboutme.com/2016/03/21/keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability-benefits/
*Article to add to Fibromyalgia, Younger and LDN pages http://nationalpainreport.com/fibromyalgia-can-we-crack-the-code-and-put-the-patient-first-8829846.html
*Add this article to Brian Walitt page http://www.cortjohnson.org/forums/threads/brian-walitt-and-the-psychosomaticism-of-fibromyalgia-another-look.3915/
*Make sure this Lightning Process study is on the LP page https://www.ncbi.nlm.nih.gov/pubmed/26983138?dopt=Abstract
*Add a link to this discussion between Elizabeth Dowsett & P. D. Welsby to her page https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2399326/pdf/postmedj00061-0066.pdf
*Add this article (and the study referred to) to Leonard Jason's page (maybe others?) http://www.meaction.net/2016/03/18/study-says-scientists-must-agree-on-classifying-patients/
*Make sure the Ramsay-style criteria created my Shepherd, Goudsmit & Howes is linked to on its own page, and those of the authors http://www.axfordsabode.org.uk/me/mecrit2014.htm
*Pick a page about a person (patient, doctor, researcher, journalist etc) and add a photo to their page.

*Add to NIH page http://www.healthrising.org/blog/2016/05/26/proposal-vastly-increase-funding-mecfs-nih-passes-first-test/
*Make sure this crucial chart of ME quality of life and related study are included and study referenced http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

*Add to NAC page https://selfhacked.com/2016/05/27/top-25-science-based-health-benefits-n-acetyl-cysteine-nac/
*Add to mitochondria and Eric Gordon pages http://www.gordonmedical.com/unravelling-complex-chronic-illness/gordon-medical-research-center-now-funding-replication-study-on-cfidsme-findings/
*Add to fatigue page http://www.healthrising.org/blog/2016/05/31/fatigue-japanese-way/
*Make sure we have a page on the GETSET trial http://forums.phoenixrising.me/index.php?threads/getset-graded-exercise-therapy-guided-self-help-treatment-getset.44749/
*Make sure the ME Association page link to purple book gets to the latest one http://www.meassociation.org.uk/2016/06/the-eight-edition-of-our-clinical-and-research-masterwork-is-published-today-1-june-2016/
*Add to NK cell and b cell pages and key author pages http://forums.phoenixrising.me/index.php?threads/novel-identification-and-characterisation-of-transient-receptor-potential-melastatin-3-ion-channels.44932/
*Add to Davis page and severely ill study page http://www.meaction.net/2016/06/04/davis-at-invest-in-me-new-severe-patients-data/
*Add to page on Fisetin https://selfhacked.com/2016/06/04/15-science-based-health-benefits-fisetin-1-favorite/
*Add to Davis and mitochondria and severely ill study pages http://www.meaction.net/2016/06/04/ron-davis-errors-metabolism/
*Add to Weardon page, maybe others http://bmcfampract.biomedcentral.com/articles/10.1186/s12875-016-0453-8
*Add to Davis page and list of news articles https://www.thejournal.ie/readme/me-invisible-illness-2792636-Jun2016/
*Add to microbiome page and Simon Carding page https://www.ncbi.nlm.nih.gov/pubmed/27275835
*Add to cognitive dynsfunction page http://www.healthrising.org/blog/2016/06/12/cognition-chronic-fatigue-syndrome-key-findings/
*Add White study http://www.jpsychores.com/article/S0022-3999(16)30327-0/abstract
*Add to vision page http://www.meresearch.org.uk/news/vision-thesis/
*Add to NIH page http://www.occupycfs.com/2016/06/14/responding-to-the-nih-rfi/
*Add to chronic fatigue page, maybe also primer(s)? http://www.self.com/wellness/2016/06/the-difference-between-chronic-fatigue-syndrome-and-extreme-tiredness/
*Add to OMF and/or severely ill study page http://www.openmedicinefoundation.org/expanded-mecfs-metabolomics-study/
*Add to mtDNA page http://www.nytimes.com/2016/06/24/science/mitochondrial-dna-mothers.html
*This appears to be Kew UK Gov archive, add to relevant page for easy access https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf

=Suggestions=
'''When a task is complete move it to the COMPLETED section at the bottom of the page'''

*Add Margaret Williams article about PACE criticism http://www.investinme.org/IIME-Newslet-1603-01.htm
*Add this UK TV segment about a patient https://www.youtube.com/watch?v=I8lsRlUhRps&feature=youtu.be Where? Possibly a new page listing TV segments, or a page for each segment, linking to all those featured?
*Pick a member of the OMF advisory board, and make sure we have a page for them giving a summary of who they are. http://me-pedia.org/wiki/Open_Medicine_Foundation
*Read Osler's Web and document key events/people/documents it refers to, linking to the book for readers to learn more.(please note the page# where she discusses the change in fingerprints, add here http://me-pedia.org/wiki/Fingerprint_change)
*Read Mary Dimmock's "Thirty Years of Disdain" and ensure MEpedia covers the key events/people/resources referred to, with citations.
*Read this summary of ME/CFS research, add details to all relevant pages http://paradigmchange.me/me-abnormalities/

==Implement acronyms as a category==
http://me-pedia.org/wiki/List_of_acronyms
:I don't think this is necessary? The current abbreviations page serves its function perfectly, as it is alphabetized, linked and has explanatory notes. A category seems like an unnecessary duplication. --[[User:Samsara|Samsara]] ([[User talk:Samsara|talk]]) 02:18, 3 November 2016 (PDT)

==Historical articles==
Add these articles:

*http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1584694/pdf/canmedaj00332-0046.pdf
*http://jama.jamanetwork.com/article.aspx?articleid=311962
*http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1277260/
*https://books.google.com/books?id=Yoi11TCZSE8C&pg=PA21&lpg=PA21&dq=Lewis+effort+syndrome+mottle&source=bl&ots=FX5vL0oafQ&sig=oGydqO_vAY5zS6A9JEGPxR6vpBI&hl=en&sa=X&ei=rG46VbzsKcWHsQSTlYCgDg&ved=0CC4Q6AEwAg#v=onepage&q=Lewis%20effort%20syndrome%20mottle&f=false
*https://books.google.com/books?id=jtcCAAAAYAAJ&pg=PA76&lpg=PA76&dq=cardiac+phase+of+the+war+neuroses&source=bl&ots=-EvPo4rQJg&sig=wbuUYp39tiPaA4sLRiTHNsAJwWM&hl=en&sa=X&ei=yLY6VbHAMuKIsQSQ84CgAg&ved=0CCoQ6AEwBA#v=onepage&q=cardiac%20phase%20of%20the%20war%20neuroses&f=false
*https://books.google.com/books?id=1AVHAQAAMAAJ&pg=PA1919&lpg=PA1919&dq=irritable+heart+of+soldiers+dacosta+1871&source=bl&ots=yeXur4uyW0&sig=8boB-L18PKPSpqVJAyk2LO9pC9w&hl=en&sa=X&ei=0oE6VZCQL-SwsAT584HQDQ&ved=0CEoQ6AEwCA#v=onepage&q=irritable%20heart%20of%20soldiers%20dacosta%201871&f=false

There are also a very large number of resources here that need to be added: http://forums.phoenixrising.me/index.php?threads/historical-me-research-literature-and-related-information.10282/

==Stem cell treatments==

Info such as at http://www.bbc.com/news/health-35065905 and http://www.prohealth.com/library/showarticle.cfm?libid=14735 would be interesting to have. [[User:Brettz9|Brettz9]] ([[User talk:Brettz9|talk]]) 11:37, 19 January 2016 (PST)

==Treatments==

A great rundown of infections related to ME/CFS and potential treatments. Link can be added to "Further reading" on the [[List of treatments]] page. Information here can also be included on the appropriate pages for specific infectious agents and specific antivirals. https://sites.google.com/site/cfstestingandtreatmentroadmap/ --[[User:JenB|JenB]] ([[User talk:JenB|talk]]) 09:24, 11 December 2015 (PST)

==Basic biochemistry==

* Cross reference with CFS research to all [[Vitamin]] and [[Mineral]] pages Also [[choline]] and [[essential fatty acid]] --[[User:JenB|JenB]] ([[User talk:JenB|talk]]) 11:47, 10 December 2015 (PST)

==Infectious disease==

New study shows that EBV can infect neurons. Apparently we didn't know this before! http://www.meaction.net/2015/12/10/study-shows-epstein-barr-virus-can-infect-human-neurons/ Consider updating the [[Herpesvirus]] page with any relevant information. I think it would be really great to expand the EBV (and really all the herpesvirus pages) with information on the association of these viruses with both [[CFS]] and other diseases, especially those involving [[B cell]]s and the possible infection of nervous tissue. --[[User:JenB|JenB]] ([[User talk:JenB|talk]]) 08:38, 16 March 2016 (PDT)

=Completed=
'''When a task is complete move it HERE'''

*Merge the two history pages together: http://me-pedia.org/wiki/History_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome and http://me-pedia.org/wiki/Important_events_timeline
*Add https://www.ncbi.nlm.nih.gov/pubmed/27088131
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170049/
*Source this chart and add to MEpedia https://twitter.com/mjdesignart/status/732061326420250626
*Add https://www.ncbi.nlm.nih.gov/pubmed/15157711
*Add http://www.meaction.net/2016/05/17/uk-mecfs-biobank-opens-for-business/
*Make sure this study and a copy of the Guardian article are in MEpedia https://twitter.com/JaneCColby/status/734460704607080448 [Note: no digital record of 1997 Guardian article; original journal article cited in Guardian and pdf included under authors and journal pages]
* Create a page for "Cell danger response", link to Wikipedia, link to our mitochondria page (both ways) and add this https://www.ncbi.nlm.nih.gov/pubmed/23981537 [Note: there is no Wikipedia page for cell danger response]
*Add http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-415
*Add https://grants.nih.gov/grants/guide/notice-files/NOT-NS-16-024.html
*Add https://www.ncbi.nlm.nih.gov/pubmed/8809350
*Add recent White paper on attitudes to treatment http://www.ncbi.nlm.nih.gov/pubmed/27521650
*Fix VanElzakker quote references: http://twitter.com/MBVanElzakker/status/770364493415219200 and http://twitter.com/MBVanElzakker/status/772885740669767680 and http://twitter.com/MBVanElzakker/status/765686260195332096 [Note: These quotes were opted not to be included because better quotes were found.] -- [[User:Kmdenmark|Kmdenmark]]
*Add https://www.ncbi.nlm.nih.gov/pubmed/27118537
*Add https://www.ncbi.nlm.nih.gov/pubmed/10189612
*Add to ME/CFS page, and also consider adding to one or more primers http://www.openmedicinefoundation.org/what-is-mecfs/
*Add to author pages, and a topic page for drugs https://www.ncbi.nlm.nih.gov/pubmed/27229907
*Add http://www.openmedicinefoundation.org/2016/05/17/new-metabolomics-study-begins/ (broken link)
*Add http://www.meaction.net/2016/05/19/dr-hornigs-talk-in-sweden-now-available/
*Add http://www.sheknows.com/health-and-wellness/articles/1119407/chronic-fatigue-syndrome
*Add https://www.ncbi.nlm.nih.gov/pubmed/27177188
*Add https://www.ncbi.nlm.nih.gov/pubmed/10189122
*Add https://www.ncbi.nlm.nih.gov/pubmed/24510231
*Add http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf
*Add https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4482824/
*Add Bateman talk slides http://www.fcclinic.com/SLEEP%20research%20CDC%20talk%20090914%20final.pdf
*Add to LDN page http://scienmag.com/revamped-ldn-site-launched-biggest-patient-initiated-drug-discovery-program-in-history/
*Add https://www.ncbi.nlm.nih.gov/pubmed/10545311
*Add to page on cell danger response https://www.ncbi.nlm.nih.gov/pubmed/23981537
*Add http://m.chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract (link broken)
*Ensure all the studies from this excellent document are in the relevant pages (topics, authors) in MEpedia https://drive.google.com/file/d/0B_Dn3IXWlI9fTGdpSjkzcmtWRUU/view
*Add Tuller/Racaniello pieces to Tuller & PACE pages http://www.virology.ws/2016/09/01/trial-by-error-continued-my-questions-for-lancet-editor-richard-horton/ http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/ http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/ http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/
*Add the infamous house of lords discussion from 2013 to PACE and countess of mar pages https://youtu.be/Fo5hdL7zXxQ?t=1 and the transcript http://www.meassociation.org.uk/2013/02/house-of-lords-debates-the-pace-trial-verbatim-report-and-youtube-6-february-2013/
*Add http://www.virology.ws/2016/05/23/an-open-letter-to-plos-one/
*Add article by QMUL student http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/
*Add blog post data release http://www.thefacultylounge.org/2016/09/the-pace-study-results-exposed-as-meaningless-and-harmful.html
*Add Rehmeyer Statnews piece https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
*Add news coverage of data release http://www.appliedclinicaltrialsonline.com/tribunal-orders-release-withheld-data-london-trial and http://www.sbs.com.au/news/thefeed/article/2016/08/29/do-you-suffer-chronic-fatigue-syndrome-theres-some-good-news-you and http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712 http://www.meaction.net/2016/09/09/qmul-releases-pace-data/ https://www.wddty.com/news/2016/09/chronic-fatigue-sufferers-getting-the-wrong-treatment-thanks-to-a-falsified-study.html http://nymag.com/scienceofus/2016/09/a-big-chronic-fatigue-syndrome-study-has-been-discredited.html?mid=twitter-share-scienceofus http://occupyme.net/2016/09/21/pace-grossly-exaggerated/ http://uk.businessinsider.com/flawed-lancet-study-me-cfs-chronic-fatigue-2016-9
*Add http://www.simonwessely.com/Downloads/Publications/CFS/85.pdf
*Add http://dspace.nwu.ac.za/handle/10394/17668
*Add to Maryann Spurgin page http://www.meadvocacy.org/circulatory_impairment
*Add this new Marshall-Gradisnik study to all relevant pages https://www.ncbi.nlm.nih.gov/pubmed/27001659
*Add http://link.springer.com/article/10.1007%2Fs11306-015-0816-5
*Add to CMRC page http://www.meresearch.org.uk/news/cmrc-agm-2016-conference-news/
*Add https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf
*Add Nath talk https://www.youtube.com/watch?v=g8z-v1F6Ax0
*Add this 2011 Klimas talk to her page https://www.youtube.com/watch?v=UMimz3iDk0s
*Add to the quotations page the quote from Nancy Klimas where she said she'd choose HIV over ME/CFS
*Add to Unumatz page http://www.eurekalert.org/pub_releases/2016-06/jl-nft060716.php
*Add https://www.youtube.com/watch?v=wsUhaGEKXBg
*Add http://www.occupycfs.com/2016/05/21/cfs-advisory-committee-meeting-outcomes/
*Add to [[Enterovirus]] http://www.ncbi.nlm.nih.gov/pubmed/2161907
*Add to Neil McGregor page https://meaustralia.net/2016/08/08/meet-the-scientists-dr-neil-mcgregor/
*Add https://twitter.com/TomKindlon/status/680141293863829505?s=09
*Add the Morris/Maes papers to both their pages and relevant topic pages, a list is here http://forums.phoenixrising.me/index.php?threads/can-you-help-working-on-mitochondria-page.45729/page-2#post-744173
*Add to Q Fever page https://cfsremission.wordpress.com/2016/05/28/post-infection-fatigue/
*Add to NIH page http://forums.phoenixrising.me/index.php?threads/transcript-of-dr-vicky-whittemores-me-cfs-proposal-to-the-nih-council-26-may-2016.44845/
*Add http://www.huffingtonpost.com/maureen-hanson/be-aware-and-beware-chron_b_10057510.html
*Add to IiME conference page http://www.healthrising.org/blog/2016/06/09/bacteria-brainstem-rituximab-progress-invest-me-chronic-fatigue-syndrome/
*Add to IiME conference page http://phoenixrising.me/archives/28153
*Add this article on three "biomarkers" for the disease to relevant pages http://www.mecfsnsw.org.au/research/three-new-biomarkers-for-mecfs/
*Add these THREE segments of interview with Alan Light https://www.youtube.com/watch?v=ZZyXUL7CPks&feature=youtu.be
*Add book http://www.meaction.net/2016/06/16/new-mecfs-book-lighting-up-a-hidden-world/
*Add Lucibee article on PACE and Chalder fatigue scale (she was a sub-editor at Lancet). Also find her previous article on PACE and add that. Also add to Chalder page, and possibly also a new page on the Chalder Fatigue Scale itself to explain it. https://lucibee.wordpress.com/2016/04/02/fatigued-by-scales-as-outcome-measures/ Here's a link to the Chalder Fatigue Scale http://www.goodmedicine.org.uk/files/assessment,%20chalder%20fatigue%20scale.pdf Also study https://www.ncbi.nlm.nih.gov/pubmed/8463991
*Add to Chalder Fatigue Scale page http://evaluatingpace.phoenixrising.me/aps3chalder.html
*Add disease symptom scale, and somehow group all symptom scales (lerner, bell, chalder, de paul, etc) https://twitter.com/TomKindlon/status/721423210919669760?s=09
*Add https://afectadasporlosrecortessanitarios.wordpress.com/2016/05/11/risk-of-suicide-due-to-neglect-amongst-pwme/ added to [[Spain]], [[Epidemiology]], [[Suicide]]
*Add this study to the GET page https://www.ncbi.nlm.nih.gov/pubmed/26995250
*Add new blog post about Karina Hansen to her page http://valerieeliotsmith.com/2016/04/04/karina-hansen-4-timeline-torture-tragedy/
*Add article to Lyme page http://www.perthnow.com.au/news/western-australia/lyme-disease-a-ticking-timebomb-that-health-authorities-say-does-not-exist/story-fnhocxo3-1226886911487
*Add to melatonin page https://www.ncbi.nlm.nih.gov/pubmed/27226183
*Pick a country page and make sure there is a flag image on it (use one that's about 200 pixels wide to avoid the need for a thumbnail image, which is currently broken).
*Add https://www.ncbi.nlm.nih.gov/pubmed/9861623
*Add this interview with Susan Levine to her page https://www.youtube.com/watch?v=Akc5upzbFxs&feature=youtu.be
*Add a photo of Ampligen to the page
*copy Tuller articles from PACE Trial to Tuller page (already done by someone)
*Make sure the Glenn Beck page links back to this post https://www.facebook.com/GlennBeck/posts/10153736242213188
*Add FINE consent form http://retractionwatch.com/wp-content/uploads/2016/05/11.4.16-Mitchell-Response-consent-form-version3-MREC-2460904.pdf
*Add to FINE page https://forbetterscience.wordpress.com/2016/05/20/plos-correction-removes-previously-available-anonymised-patient-clinical-trial-data/
*Add to IBS page https://jcoynester.wordpress.com/2016/05/21/no-irritable-bowel-syndrome-is-not-all-in-your-head/
*Add to MTHFR page https://selfhacked.com/2016/05/18/need-know-mthfr-genespolymorphisms-c677t-rs1801133/
*Add to Rikva Solomon page https://www.statnews.com/2016/05/24/chronic-fatigue-syndrome-myalgic-encephalomyelitis/
*Add to Tom Kindlon page https://www.pinterest.com/tomkindlon/
*Add this article about preliminary findings from Davis work to pages for Davis, Mitochondria, End ME/CFS Project, and Naviaux pages http://www.cortjohnson.org/forums/threads/end-me-cfs-severe-patient-study-turns-to-the-mitochondria.3949/page-2
*Add this article to Learn More section of NIH study page http://www.medpagetoday.com/Neurology/GeneralNeurology/56772
*Add this interview with Jennifer Brea to her page in "Talks & interviews" section https://secure-ec.libsyn.com/p/1/c/3/1c390d4707a99658/WMCLive_Episode159.mp3?d13a76d516d9dec20c3d276ce028ed5089ab1ce3dae902ea1d06cd8f33d6cd5b120e&c_id=11198959
*Make sure the Fukuda/CDC criteria page includes a link to the actual criteria definition: http://www.cfids-me.org/cdcdefine.html
*Make sure Alan Light's gene expression chart that so strikingly shows the effects of exercise on patients is included in MEpedia.(Pace Trial)
*Add educational video on central nervous system https://www.youtube.com/watch?v=q8NtmDrb_qo (Nervous System)
*Add educational video on autonomic nervous system https://www.youtube.com/watch?v=71pCilo8k4M (and POTS & OI pages?)
*Add educational video on parasympathetic nervous system https://www.youtube.com/watch?v=qqU-VjqjczE (Nervous System)
*Add educational video on sympathetic nervous system https://www.youtube.com/watch?v=0IDgBlCHVsA (Nervous System)
*Look over the original study and add new information to [[Epstein-Barr virus]] page http://www.meaction.net/2015/12/10/study-shows-epstein-barr-virus-can-infect-human-neurons/
*Add https://batemanhornecenter.org/link-between-gut-microbiome-and-pem/
*Add this article on PEM to the PEM page http://me-cfs.se/blogg/suggestion-to-replace-pem-by-par/
*Add this study to PEM page, Zinn pages, Jason page, maybe others https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/#!po=2.51799
*Add this study to page on cognitive symptoms https://www.ncbi.nlm.nih.gov/pubmed/27032787
*Replace this page with a category and ensure all sub-pages are categorised into a useful structure http://me-pedia.org/wiki/Research_initiatives_Europe
*Replace this page with a category http://me-pedia.org/wiki/Clinical_doctors_worldwide categorise all pages within it
*Replace this page with a category http://me-pedia.org/wiki/Patient_Groups_Worldwide
*Add article to Shirley Conran page http://www.dailymail.co.uk/femail/article-3511666/The-one-lesson-ve-learned-life-Author-Shirley-Conran-surviving-ME.html
*Make sure this recent update by IiME on their Rituximab research is included on the Rituximab page under Learn more http://www.ukrituximabtrial.org/Rituximab%20news-Mar16%2001.htm
*Add photos (pre-illness and post) to Whitney Dafoe's page http://me-pedia.org/wiki/Whitney_Dafoe
*Add Ampligen http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/ArthritisAdvisoryCommittee/UCM334430.pdf
*Add vitamin B study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297139/
*Add this Lassesen article to the LDS page under Learn More https://cfsremission.wordpress.com/2016/03/19/review-of-low-dose-naltrexone/
*Add latest video (with Q&A) to PACE page and Tuller page. On the video Tuller states he was involved in Act Up, please add that fact to his page. https://www.youtube.com/watch?v=1fS6Gzc52VI
*Added the appropriate Linus Pauling Institute page to all vitamins and minerals pages
*Add this Mary Schweitzer post to the NIH study page http://slightlyalive.blogspot.co.uk/2016/03/open-letter-to-dr-sanjay-gupta-on-in.html
*Add https://www.youtube.com/watch?v=bCUvygbYdXs
*Add https://www.ncbi.nlm.nih.gov/pubmed/10209352
*Make sure this study is linked to from the natural killer cell page https://www.dovepress.com/articles.php?article_id=26236
*Add this Norwegian TV segment about Rituximab (and private availability) to Rituximab page https://www.youtube.com/watch?v=MfqJWRhgVx0&feature=youtu.be
https://dl.dropboxusercontent.com/u/23608059/simon%20on%20eysenck.pdf
*Add this study on endothelial function by Julia Newton https://www.ncbi.nlm.nih.gov/pubmed/22078396
*Add https://www.ncbi.nlm.nih.gov/pubmed/10535608
*Add http://solvecfs.org/spring-chronicle/spring-chronicle-2016.pdf
*Add http://www.meaction.net/2016/04/24/transcript-solve-mecfs-interviews-dr-avi-nath/
*Add SPECT study https://www.ncbi.nlm.nih.gov/pubmed/1491843
*Add https://twitter.com/EUROMEALL
*Add https://www.ncbi.nlm.nih.gov/pubmed/9476743
*Add https://www.youtube.com/watch?v=87zAPTEtxas
*Add https://www.youtube.com/watch?v=wJB95m4FLa0&feature=youtu.be
*Add Ron Davis MM interview to his page https://www.youtube.com/watch?v=fiSPS85sTkw&feature=youtu.be
*Make sure the IACFS name change definition is included http://iacfsme.org/ME-CFS-Primer-Education/Pages/ME-CFS-Name-Change.aspx
*Add http://iacfsme.org/PDFS/2016MayNesletter/Attachment-08-Dr-Keith-Geraghty-Doing-CFS-research.aspx
*Add https://www.ncbi.nlm.nih.gov/pubmed/27088059
*Make sure this study is linked to on the Carnitine page https://www.ncbi.nlm.nih.gov/pubmed/8148455
*Add http://www.meadvocacy.org/eileen_holderman_cfsac_public_comment_about_nih_study
*Add http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html
*Add https://www.ncbi.nlm.nih.gov/pubmed/27091026
*Add https://www.ncbi.nlm.nih.gov/pubmed/9226729
*Add https://www.ncbi.nlm.nih.gov/pubmed/9170115
*Add quote on quotations, cause of death and Chu pages https://twitter.com/TomKindlon/status/728660598125408257?s=09
*Add https://www.ncbi.nlm.nih.gov/pubmed/19228959
*Add http://www.healthrising.org/forums/threads/an-eye-on-the-mitochondria-man-robert-naviaux-and-chronic-fatigue-syndrome-me-cfs.4163/
*Add https://www.ncbi.nlm.nih.gov/pubmed/9149090
*Add a picture of Rituximab to the Rituximab page
*Make sure the IOM report page includes a link to their brief summary: http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf
*Add to POTS page http://hic.sagepub.com/content/2/1/2324709614527812.full
*Add ritux update http://www.healthrising.org/forums/threads/rituximab-study-update-researchers-focus-on-rare-gene-variant.4319/
*Add https://batemanhornecenter.org/uncovering-biomarkers-fcg-receptors/
*Add https://www.facebook.com/notes/jan-van-roijen/re-dr-avi-nath-me/10154382672523322
*Add https://www.youtube.com/watch?v=li7zQgN-PxQ&feature=youtu.be
*Add https://www.youtube.com/watch?v=xMcZ-UTlRmU&feature=youtu.be
*Make sure this study is on author pages and maybe elsewhere too https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/#!po=2.51799
*Make sure this study is on NK cell page https://www.ncbi.nlm.nih.gov/pubmed/2824604
*Add to POTS page http://forums.phoenixrising.me/index.php?threads/is-postural-orthostatic-tachycardia-a-useful-diagnostic-marker-in-chronic-fatigue-syndrome-patients.44915/
*Make sure this study is linked to from the HHV6 page https://twitter.com/EricaVerrillo/status/715599637021859840?s=09
*Add https://www.ncbi.nlm.nih.gov/pubmed/27187093
*Add to microbiome page https://cfsremission.wordpress.com/2016/06/25/83-accuracy-in-mecfs-diagnosis-with-microbiome-analysis/
*Add https://www.ncbi.nlm.nih.gov/pubmed/27223465
*On the home page click on "Immune exhaustion hypothesis" to create the page, and add this article to it (and for extra points, the studies referenced, you may be able to copy & paste from eg the Hornig page) http://simmaronresearch.com/2016/03/are-chronic-fatigue-syndrome-mecfs-and-fibromyalgia-immune-exhaustion-disorders/
*Pick a member of the IOM report committee and ensure we have a page on who they are [[Institute_of_Medicine_report]] page
*Add this Q-fever article on persistence post-infection http://qjmed.oxfordjournals.org/content/95/12/832.long
*Make sure we have a page (however small/simple) on the Canadian Criteria, that links to the criteria document: http://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf
*Immunosuppression from Rituximab may cause reactivation of a persistent enteroviral infection with potentially dangerous neurological complications http://www.sciencedirect.com/science/article/pii/S0042682210007683
*Make sure this article is on the list of articles about MECFS http://www.huffingtonpost.com/-stephanie-land/chronic-fatigue-syndrome-_1_b_9513498.html
*Add Peter White letter to the Wall St Journal. http://www.wsj.com/articles/public-release-of-cfs-data-is-limited-by-privacy-rules-1458846440 (full text here http://forums.phoenixrising.me/index.php?threads/peter-white-writes-to-wall-street-journal.43750/)

[[Category:User to-dos]]
[[Category:MEpedia guidelines]]

Important events timeline

2018-05-25T04:37:49Z

Jeshyr:Added all events from the History of myalgic encephalomyelitis and chronic fatigue syndrome page to here

==Victorian Period==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1869 || || [[George Miller Beard]] coined the term "[[neurasthenia]]." He thought it was an especially American affliction of nervous exhaustion, affected men who were "brain workers" and women who advanced too far in their education.
|-
|?? || || [[Jean-Martin Charcot]]. Many of his patients were suffering from [[epilepsy]]. Influence on [[Sigmund Freud]] and the concept of [[functional disorder]]s.
|}

== Early 20th century ==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1934 || || [[Atypical Polio]] - an [[outbreak]] at [[Los_Angeles_atypical_polio_outbreak|Los Angeles County Hospital]] of a disease "resembling poliomyelitis" was recorded.
|}

==1950s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1955 || || [[Royal Free Hospital outbreak]] in London, England, which led to the use of the name [[Myalgic Encephalomyelitis]].
|}

==1960s==

==1970s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1975 || || Outbreak in Mercy San Juan Hospital, in a suburb of Sacramento, California, Unites States ([[1975 Sacramento outbreak]]).
|}

==1980s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1980 || || Outbreak in Ayrshire, Scotland ([[1980-81 Ayrshire outbreak]]).
|-
|1984 || || Disease outbreak in [[1984 Incline Village chronic fatigue syndrome outbreak|Incline Village]] near Lake Tahoe in California, United States.
|-
|1984 || || Disease outbreak in Chapel Hill, North Carolina, United States([[1984 Chapel Hill outbreak]]).
|-
|1985 || || Disease outbreak in Lyndonville, New York, United States ([[1985 Lyndonville outbreak]]).
|-
|1988 || || First definition of [[Chronic fatigue syndrome]] produced, later updated in 1994.
|}

==1990s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|1994 || || [[Chronic fatigue syndrome]] criteria update to the 1994 [[Fukuda criteria]].
|-
|1994 || September || Publication of the [[1994 National Task Force Report on CFS/PVFS/ME]] by [[Westcare UK]], notably the [[London criteria]]
|-
|}

==2000s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|2009 || || Publication of the [[Judy Mikovits]] study in ''[[Science]]'' claiming a link between [[Chronic fatigue syndrome]] and the [[XMRV]] retrovirus.
|-
|2009 || || Preliminary research published by Norwegian researchers proposes assessment of the use of cancer drug [[Rituximab]] to treat the disease.
|}

==2010s==
{| class="wikitable" width="100%"
! style="width:6%" | Year || style="width:12%" | Date || Event
|-
|2011 || || The controversial British [[PACE trial]] is published in ''[[The Lancet]]'', recommending [[cognitive behavioral therapy]] and [[graded exercise therapy]] as treatments.
|-
|2011 || || The ''[[Science]]'' journal retracts the [[XMRV]] paper.
|-
|2015 || || The [[Institute of Medicine report]] is released: "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an illness", which reviewed thousands of articles, and concluded that "ME/CFS is a serious, chronic, complex and multisystem disease that frequently and dramatically limits the activities of affected patients" (p. 209). The report recommended new diagnostic criteria, and a new name for the condition: [[Systemic Exertion Intolerance Disease]] (SEID).
|-
|2015 || || [[Francis Collins]] announces the intent of the [[National Institutes of Health]] to take the disease more seriously.
|-
|2015 || || The [[Open Medicine Foundation]] announces its [[End ME/CFS Project]], led by [[Ronald Davis]], has support of three Nobel prize laureates.
|-
|2016 || || [[National Institutes of Health]], United States begins study of ME/CFS patient in their in-house Clinical Center in Bethesda
|}

==See also==
*[[Osler's Web]] by [[Hillary Johnson]]
*[[Thirty Years of Disdain]] by [[Mary Dimmock]]
*[[List of outbreaks]]
*[[ME and CFS in popular culture]]
*[[Notable studies]]
*[[History of myalgic encephalomyelitis and chronic fatigue syndrome]]

==References==
<references/>

[[Category:History]]

Activity management based on 2-day cardiopulmonary exercise testing results

2018-05-25T04:01:42Z

Jeshyr:Added Category:Management strategies

The results from a [[two-day cardiopulmonary exercise testing | two-day cardiopulmonary exercise test]] can help [[ME/CFS]] patients manage their activity levels in order to minimize [[post-exertional malaise]] (PEM).

==Theory==
In "Conceptual model for physical therapist management of chronic fatigue syndrome/myalgic encephalomyelitis" by [[Todd Davenport | Todd E. Davenport]], [[Staci Stevens | Staci R. Stevens]], [[Mark VanNess | Mark J. VanNess]], [[Christopher Snell | Christopher R. Snell]], and Tamara Little, recommendations are divided into two categories: pacing self-management and therapeutic exercise.<ref>http://ptjournal.apta.org/content/90/4/602.long</ref>

Pacing self-management focuses on staying below the anaerobic threshold (AT) heart rate, as determined by a [[2-day CPET]]. Strategies include wearing a heart rate monitor, frequent breaks including diaphragmatic breathing, alternate positions, and use of adaptive equipment, and keeping an activities log to further identify activities that induce [[post-exertional malaise]] [[PEM]].

Therapeutic exercise is designed to prevent excessive use of the aerobic respiration system. They recommend starting with stretching and active range of motion exercises. When these are well tolerated without triggering PEM, the patient can move on to strength training: short duration, low intensity strengthening exercises with adequate rest intervals. Finally, patients can advance to short duration, low intensity interval training. Patients who can tolerate this can move on to short-duration aerobic interval training.

In all these stages, interval duration should be under 2 minutes, and the heart rate kept at 10% below the AT. The paper stresses caution and slow changes, as tolerated.

In the absence of [[2-day CPET]] results, they suggest 3 methods of estimating the anaerobic threshold (AT) heart rate:
* estimating the AT from V̇o2max measurements obtained during submaximal exercise testing;
* the heart rate corresponding to Borg Rating of Perceived Exertion<ref>http://sportsmedicine.about.com/cs/strengthening/a/030904.htm</ref> ratings of 13 to 15 during submaximal exercise testing may be used.
* estimating the heart rate at AT by calculating 55% of the HR at the V̇o2max as a starting point, although specific establishment of the HR at the AT in this population requires additional research. In the general population, this is calculated by the formula (220-age) * 0.55.

In "Functional Outcomes of Anaerobic Rehabilitation in a Patient with Chronic Fatigue Syndrome" by [[Staci Stevens]] and [[Todd Davenport]] recommendations for an [[ME/CFS]] patient were again divided into two categories, pacing self-management and therapeutic exercise.<ref>http://iacfsme.org/ME-CFS-Primer-Education/Bulletins/BulletinRelatedPages2/FUNCTIONAL-OUTCOMES-OF-ANAEROBIC-REHABILITATION-IN.aspx</ref>

Pacing self-management focused on keeping the heart rate below the ventilatory threshold, and using diaphragmatic breathing.<ref>http://www.cortjohnson.org/blog/2013/08/13/heart-rate-monitor-program-improves-heart-functioning-in-chronic-fatigue-syndrome-mecfs/</ref>

Restorative strengthening and flexibility exercises were recommended as follows:
* keeping the heart rate below the AT;
* 3 times weekly;
* exercises were done lying down<ref>http://www.cortjohnson.org/blog/2013/08/13/heart-rate-monitor-program-improves-heart-functioning-in-chronic-fatigue-syndrome-mecfs/</ref>

At the one year follow-up, the patient showed 75% improvement in the time it took her to recover from the 2-day CPET itself. She also reported increased ability to complete daily activities.

==Evidence==
* Case report on one-year follow-up of patient who was given a rehabilitation program after a [[2-day CPET]],<ref>http://iacfsme.org/ME-CFS-Primer-Education/Bulletins/BulletinRelatedPages2/FUNCTIONAL-OUTCOMES-OF-ANAEROBIC-REHABILITATION-IN.aspx</ref> and descriptive article by [[Cort Johnson]] on the study, providing additional information <ref>http://www.cortjohnson.org/blog/2013/08/13/heart-rate-monitor-program-improves-heart-functioning-in-chronic-fatigue-syndrome-mecfs/</ref>

==Clinicians==
*[[Staci Stevens]] at the [[Workwell Foundation]], California, USA
*[[Betsy Keller]] at Ithaca College, New York, USA.

==Risks & safety==
Although the [[Institute of Medicine]] (IOM) report states that [[2-day CPET]] is very reliable to objectively measure [[post-exertional malaise]] PEM, the IOM committee emphasized "that the CPET is not required to diagnose patients with ME/CFS. Further, this test carries substantial risk for these patients as it may worsen their condition (Nijs et al., 2010; VanNess et al., 2010)."<ref>Chapter 4, Review of the Evidence on Major ME/CFS Symptoms and Manifestations." Institute of Medicine. ''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.'' Washington, DC: The National Academies Press, 2015. doi:10.17226/19012. Retrieved from http://www.nap.edu/read/19012/chapter/6?term=CPET#83</ref>

==Costs & availability==
[[2-day CPET]] testing is available at the following locations:
*[[Workwell Foundation]] (California, United States)
*[[Betsy Keller]] at Ithaca College (New York, United States) - Cost is $2200. Because they are based in a college setting (not healthcare setting), they cannot process insurance (including Medicare or Medicaid), so the patient would need to work directly with their insurer about reimbursement.<ref>private email</ref>
*[[Charles Lapp]] at the Hunter-Hopkins Center in Charlotte, NC
*[[Laura Black]] in the Hunter-Hopkins Center in Charlotte, NC

==Learn more==
*Wikipedia

==See also==
[[Cardiopulmonary exercise testing]] ([[CPET]])

==References==
<references/>

[[Category:Potential treatments]]
[[Category:Management strategies]]

Staphylococcus vaccine

2018-05-25T03:51:09Z

Jeshyr:Added Category:Immunomodulators

'''Staphylococcus vaccine''' (Staphypan) has been proposed as an immunomodulatory therapy in the treatment of [[Chronic Fatigue Syndrome]]. It was first used in Sweden with patients who became ill after a 1957 outbreak of [[Asian flu]].<ref name="youtubegottfries">[https://www.youtube.com/watch?v=TCF_RYCnHW4 YouTube - Interview with Professor Carl-Gerhard Gottfries, Part 1: Background and Vaccine]</ref>

A Swedish study found significant improvement in [[Fibromyalgia]] and Chronic Fatigue Syndrome patients with a mean reduction in [[CPRS-15]] scores of 50%.<ref>[http://iacfsme.org/ME-CFS-Primer-Education/Bulletins/2009/Immunotherapy-of-Fibromyalgia-and-Chronic-Fati-(1).aspx IACFS/ME - Immunotherapy of Fibromyalgia and Chronic Fatigue Syndrome by a Staphylococcus Toxoid Vaccine]</ref><ref name="zachrisson2002" />

A second study found significantly increased capacity of serum to neutralise alpha-toxin and a significant increase in serum IgG to [[alpha-toxin]] and [[lipase]] in patients receiving Staphypan.<ref name="zachrisson2004" />

Staphypan is no longer being commercially manufactured.<ref name="youtubegottfries" /> Another staphylococcal toxoid vaccine manufactured by Russian Medgamal is being used by some patients, but it does not contain the same antigens as Staphypan. Its efficacy is unclear but is thought to be less than that of Staphypan.

Staphylococcal vaccine favors [[Th1]] dominance.<ref>Reference needed</ref>

==Learn more==
*[https://www.youtube.com/watch?v=TCF_RYCnHW4 Interview with Professor Carl-Gerhard Gottfries, Part 1: Background and Vaccine], YouTube
*[https://cfsremission.wordpress.com/2016/01/30/a-forgotten-treatment-for-fibromyalgiachronic-fatigue-syndrome/ A forgotten treatment for fibromyalgia/chronic fatigue syndrome?], CFS Remission blog, January 30, 2016

==See also==
*[[Staphylococcus aureus]]

==References==
<references>

<ref name="zachrisson2002">{{Citation| issn = 1090-3801| volume = 6| issue = 6| pages = 455–466| last1 = Zachrisson| first1 = Olof| last2 = Regland| first2 = Björn| last3 = Jahreskog| first3 = Marianne| last4 = Jonsson| first4 = Michael| last5 = Kron| first5 = Margareta| last6 = Gottfries| first6 = Carl-Gerhard| title = Treatment with staphylococcus toxoid in fibromyalgia/chronic fatigue syndrome--a randomised controlled trial| journal = European Journal of Pain (London, England)| date = 2002| pmid = 12413434}}</ref>

<ref name="zachrisson2004">{{Citation| doi = 10.1007/s10096-003-1062-8| issn = 0934-9723| volume = 23| issue = 2| pages = 98–105| last1 = Zachrisson| first1 = O.| last2 = Colque-Navarro| first2 = P.| last3 = Gottfries| first3 = C. G.| last4 = Regland| first4 = B.| last5 = Möllby| first5 = R.| title = Immune modulation with a staphylococcal preparation in fibromyalgia/chronic fatigue syndrome: relation between antibody levels and clinical improvement| journal = European Journal of Clinical Microbiology & Infectious Diseases: Official Publication of the European Society of Clinical Microbiology| date = February 2004| pmid = 14735403}}</ref>

</references>

[[Category:Potential treatments]]
[[Category:Immunomodulators]]

Talk:Energy Envelope Theory

2018-05-22T10:11:55Z

Jeshyr:Page title capitalisation question

=Capitalisation?=

I think this page should be called [[Energy envelope theory]] (without the two later words being capitalised) to match with the rest of the site, but I'm not sure what the rename procedure is around here so hopefully someone sees this in the avalanche of Recent changes! [[User:Jeshyr|Jeshyr]] ([[User talk:Jeshyr|talk]])

Intravenous immunoglobulin

2018-05-22T10:04:23Z

Jeshyr:Added Category:Immunomodulators

'''Intravenous immunoglobulin''' (IVIG) is a proposed treatment for [[chronic fatigue syndrome]].

==Theory==

==Evidence==
There has been inconsistent evidence for the use of IVIG in the treatment of [[ME]] or CFS. This may be due to the heterogeneity of triggers and immune system involvement in the [[ME/CFS]] population.

''The American Journal of Medicine'' published two studies with different conclusions following each other in the November 1990 issue. The two studies were done in different countries and neither report the case definitions used to identify patients. The study with positive results used a dose twice that as the study with negative results. Following are the abstracts.

===Positive results===
*1990, A double-blind, placebo-controlled trial of intravenous immunoglobulin therapy in patients with chronic fatigue syndrome. Done by the Department of Infectious Diseases, Prince Henry Hospital, Sydney, Australia. This study found that a low CD4 count at baseline before IVIG treatment commenced was a predictor of which ME/CFS patients would do well on IVIG.
<blockquote>"'''METHOD''': Forty-nine patients (40 with abnormal cell-mediated immunity) participated in a randomized, double-blind, placebo-controlled trial to determine the effectiveness of high-dose intravenously administered immunoglobulin G. The patients received three intravenous infusions of a placebo solution or immunoglobulin at a dose of 2 g/kg/month. Assessment of the severity of symptoms and associated disability, both before and after treatment, was completed at detailed interviews by a physician and psychiatrist, who were unaware of the treatment status. In addition, any change in physical symptoms and functional capacity was recorded using visual analogue scales, while changes in psychologic morbidity were assessed using patient-rated indices of depression. Cell-mediated immunity was evaluated by T-cell subset analysis, delayed-type hypersensitivity skin testing, and lymphocyte transformation with phytohemagglutinin.
'''RESULTS''': At the interview conducted by the physician 3 months after the final infusion, 10 of 23 (43%) immunoglobulin recipients and three of the 26 (12%) placebo recipients were assessed as having responded with a substantial reduction in their symptoms and recommencement of work, leisure, and social activities. The patients designated as having responded had improvement in physical, psychologic, and immunologic measures (p less than 0.01 for each).
'''CONCLUSION''':Immunomodulatory treatment with immunoglobulin is effective in a significant number of patients with CFS, a finding that supports the concept that an immunologic disturbance may be important in the pathogenesis of this disorder."<ref name="lloyd1990" /></blockquote>

===Negative results===
*1990, A controlled trial of intravenous immunoglobulin G in chronic fatigue syndrome. Done by the Department of Medicine, Hennepin County Medical Center, Minneapolis, Minnesota.
<blockquote>"'''METHODS''': Thirty patients with CFS were enrolled in a double-blind, placebo-controlled trial of IV IgG. The treatment regimen consisted of IV IgG (1 g/kg) or intravenous placebo (1% albumin solution) administered every 30 days for 6 months. Participants completed a self-assessment form prior to each of the six treatments, which was used to measure severity of symptoms, functional status, and health perceptions. Patients were also asked to report adverse experiences defined as worsening of symptoms occurring within 48 hours of each treatment.
'''RESULTS''': Twenty-eight patients completed the trial. At baseline, all 28 patients complained of moderate to severe fatigue, and measures of social functioning and health perceptions showed marked impairment. Low levels of IgG1 were found in 12 (42.9%), and 18 (64.3%) had low levels of IgG3. At the end of the study, no significant therapeutic benefit could be detected in terms of symptom amelioration or improvement in functional status, despite restoration of IgG1 levels to a normal range. Major adverse experiences were observed in 20% of both the IV IgG and placebo groups.
'''CONCLUSION''': The results of this study indicate that IV IgG is unlikely to be of clinical benefit in CFS.<ref name="peterson1990" /></blockquote>

===Other Positive Studies===
*2008, [[Tae Park]], MD, presented his study about IVIG for ME/CFS patients at the [http://www.investinme.eu/IIMEC3.shtml#report 3rd Invest in ME International ME Conference]. He checked the Glomerular filtration rate (GFR) in 125 ME/CFS patients who met the [[Fukuda criteria]] by measuring s-creatinine clearance with cockcroft-auld formula. "We found there were significant renal blood flow improvements in 60 patients (50%) with IVIG treatment...the improvement of renal blood flow is between 35% and 60% of previous GFR. These findings of improved renal blood flow may be evidence of improved cerebral blood flow...[and] may explain the improvement of cognitive function and other symptoms of ME/CFS patients with IVIG treatments."<ref name="iime2008" />

*2003, "Successful Intravenous Immunoglobulin Therapy in 3 Cases of Parvovirus B19-Associated Chronic Fatigue Syndrome"<blockquote>"ABSTRACT: Three cases of chronic fatigue syndrome (CFS) that followed acute parvovirus B19 infection were treated with a 5-day course of intravenous immunoglobulin (IVIG; 400 mg/kg per day), the only specific treatment for parvovirus B19 infection. We examined the influence of IVIG treatment on the production of cytokines and chemokines in individuals with CFS due to parvovirus B19. IVIG therapy led to clearance of parvovirus B19 viremia, resolution of symptoms, and improvement in physical and functional ability in all patients, as well as resolution of cytokine dysregulation."<ref name="Kerr, 2003"/></blockquote>

*1999, "Five-Year Follow-Up of Young People with Chronic Fatigue Syndrome Following the Double Blind Randomised Controlled Intravenous Gammaglobulin Trial.<blockquote>"Summary: Three and 5 year follow-up studies of eighty-nine young people with Chronic Fatigue Syndrome who completed a double blind randomised controlled trial of intravenous gammaglobulin has been conducted to determine whether the improvement following the intravenous gammaglobulin was sustained...Follow-up data were obtained on 86 of 89 after the study concluded...There was no persistent deterioration in function related to CFS in any young person. Four had reported recurrence of symptoms lasting 3-8 months and again improved. Others remained ‘improved’ or continued to improve...Seventeen per cent of those who responded were still moderately unwell with another 23% ‘not back to normal yet.’ Sixty per cent of participants considered they were ‘well’ at the last follow-up with 45% scoring 10/10...There was no deterioration in overall function over the 5 years following participation in the gammaglobulin trial, and young people continued to improve although a significant number were still disabled."<ref name="Rowe, K, 1999"/></blockquote>

*1997, "Double-blind randomized controlled trial to assess the efficacy of intravenous gammaglobulin for the management of chronic fatigue syndrome in adolescents." Done at the Department of Paediatrics, University of Melbourne Royal Children's Hospital, Victoria, Australia. <blockquote>"ABSTRACT: A double blind randomized controlled trial was conducted in 71 adolescents aged 11-18 years... [fulfilling] Fukuda et al., 1994...Three infusions of 1 gm/kg ... were given one month apart. The dummy solution was a 10% w/v maltose solution with 1% albumin of equivalent volume for weight. Efficacy was assessed by difference in a mean functional score including school attendance, school work, social activity and physical activity, between baseline, three months and six months after the final infusion. There was a significant mean functional improvement at the six month follow-up of 70 adolescents with Chronic Fatigue Syndrome of average duration 18 months. There was also a significant improvement for both groups from the beginning of the trial to the six month post infusion follow-up.<ref name="Rowe, K, 1997"/></blockquote>

*1992, "Immunological and psychological dysfunction in patients receiving immunotherapy for chronic fatigue syndrome." Study done at Mood Disorders Unit, Prince Henry Hospital, Little Bay, Australia. <blockquote>"ABSTRACT: Associations between immunological and psychological dysfunction in 33 patients with Chronic Fatigue Syndrome (CFS) were examined before and in response to treatment in a double blind, placebo-controlled trial of high dose intravenous immunoglobulin. Only those patients who received active immunotherapy demonstrated a consistent pattern of correlations between improvement in depressive symptoms and markers of cell-mediated immunity (CMI). This finding lends some support to the hypothesis that depressive symptoms in patients with CFS occur secondary to, or share a common pathophysiology with, immunological dysfunction. This pattern and the lack of strong associations between depression and immunological disturbance prior to treatment are less supportive of the view that CFS is primarily a form of depressive disorder or that immunological dysfunction in patients with CFS is secondary to concurrent depression.<ref name="Hickie, 1992"/></blockquote>

==Clinicians==
Dr. [[Irving Spurr]] of the UK, "uses immunogloulin treatment extensively and has not done a RCT [randomized controlled trial] because he does not believe it is ethical to not offer it to clients. There are apparently problems with the use of IVIG in the UK and so he used IM."<ref name="iime2008" />

Dr. [[John Chia]] of the US, uses IVIG in patients with both hypogammaglobulinemia and CFS.<ref>[https://med.stanford.edu/chronicfatiguesyndrome/infections/entero/entero-treatment.html Stanford ME/CFS Initiative – Enteroviruses Treatment Options – Physician Perspective: John Chia, MD]</ref>

==Risks & safety==
The risks of IGIV administration must be carefully weighed against potential benefits.

From 1-15% of people receiving IVIG infusions report mild self-limited symptoms, including: fever, chills, headache, myalgia, nausea and/or vomiting, low back pain, increased heart rate, blood pressure changes, shortness of breath and chest tightness. Onset of symptoms range from 30 minutes to several days post-infusion. The cause is thought to be from pathogen die-off and/or a mild allergic reaction. As with any blood product, severe and even fatal anaphylactoid reactions may occur. When using IVIG, the risk is in patients with anti-IgA antibodies of the IgG and IgE isotypes in the patient's serum, though this condition is extremely rare.<ref name="duhem1994" /><ref>[https://primaryimmune.org/wp-content/uploads/2011/11/Work-Group-Report-III.pdf American Academy of Allergy, Asthma & Immunology – Work Group Report on the appropriate use of intravenously administered immunoglobulin (IGIV)] (pdf)</ref>

Reports of renal failure associated with IVIG occur in less than 1% of cases. Caution is urged for those patients with pre-existing renal insufficiency.<ref name="ahsan1998" />

One case study recorded a paradoxical effect where IVIG administration increased the replication of [[Parvovirus B19]], a pathogen associated with CFS.<ref name="attard2015" />

==Costs & availability==
IVIG for [[ME/CFS]] is considered an off-use or non-[[FDA]] approved treatment. As a result, few physicians prescribe it and insurance companies will not cover it, unless a co-morbid condition that merits IVIG exists. The estimated out of pocket cost in the U.S. for a four dose course of IVIG for a 70 kg/155 lb person at 2 g/kg could cost $25,000-$26,000.<ref>http://www.medscape.com/viewarticle/523523_5</ref>

==List of studies==

*[http://www.journalofclinicalvirology.com/article/S1386-6532(14)00447-8/abstract Paradoxical response to intravenous immunoglobulin in a case of Parvovirus B19-associated chronic fatigue syndrome], Attard, Luciano et al.Journal of Clinical Virology , Volume 62 , 54 - 57

==Learn more==

==See also==

==References==
<references>
<ref name="Hickie, 1992">
{{Citation
| last1 = Hickie | first1 = I. | authorlink1 =
| last2 = Lloyd | first2 = A. | authorlink2 =
| last3 = Wakefield | first3 = D. | authorlink3 =
| title = Immunological and psychological dysfunction in patients receiving immunotherapy for chronic fatigue syndrome.
| journal = The Australian and New Zealand Journal of Psychiatry | volume = 26 | issue = 2 | page = 249-56
| date = June 1992
| pmid = 1642616
| url = http://www.ncbi.nlm.nih.gov/pubmed/1642616
}}
</ref>

<ref name="Rowe, K, 1997">
{{Citation
| last1 = Rowe | first1 = K.S. | authorlink1 = Kathy Rowe
| title = Double-blind randomized controlled trial to assess the efficacy of intravenous gammaglobulin for the management of chronic fatigue syndrome in adolescents.
| journal = Journal of Psychiatric Research | volume = 31 | issue = 1 | page = 133-47
| date = 1997
| pmid = 9201655
}}
</ref>

<ref name="Rowe, K, 1999">
{{Citation
| last1 = Rowe | first1 = K.S. | authorlink1 = Kathy Rowe
| title = Five-Year Follow-Up of Young People with Chronic Fatigue Syndrome Following the Double Blind Randomised Controlled Intravenous Gammaglobulin Trial
| journal = Journal of Chronic Fatigue Syndrome | volume = 5 | issue = 3-4 | page = 97-107
| date = 1999
| doi = 10.1300/J092v05n03_08
}}
</ref>

<ref name="Kerr, 2003">
{{Citation
| last1 = Kerr | first1 = J. R. | authorlink1 =
| last2 = Cunniffe1 | first2 = V. S. | authorlink2 =
| last3 = Kelleher | first3 = P. | authorlink3 =
| last4 = Bernstein | first4 = R. M. | authorlink4 =
| last5 = Bruce | first5 = I. N. | authorlink5 =
| title = Successful Intravenous Immunoglobulin Therapy in 3 Cases of Parvovirus B19-Associated Chronic Fatigue Syndrome
| journal = Clinical Infectious Diseases | volume = 36 | issue = 9 | page = 100-106
| date = 2003
| doi = 10.1086/374666
}}
</ref>

<ref name="attard2015">{{Citation| doi = 10.1016/j.jcv.2014.11.021| issn = 1386-6532| volume = 62| pages = 54–57| last1 = Attard| first1 = Luciano| last2 = Bonvicini| first2 = Francesca| last3 = Gelsomino| first3 = Francesco| last4 = Manfredi| first4 = Roberto| last5 = Cascavilla| first5 = Alessandra| last6 = Viale| first6 = Pierluigi| last7 = Varani| first7 = Stefania| last8 = Gallinella| first8 = Giorgio| title = Paradoxical response to intravenous immunoglobulin in a case of Parvovirus B19-associated chronic fatigue syndrome| journal = Journal of Clinical Virology| accessdate = 2016-12-12| date = 2015-01-01| url = http://www.journalofclinicalvirology.com/article/S1386-6532(14)00447-8/abstract| pmid = 25542471}}</ref>

<ref name="ahsan1998">{{Citation| issn = 1121-8428| volume = 11| issue = 3| pages = 157–161| last = Ahsan| first = N.| title = Intravenous immunoglobulin induced-nephropathy: a complication of IVIG therapy| journal = Journal of Nephrology| date = June 1998| pmid = 9650125}}</ref>

<ref name="duhem1994">{{Citation| issn = 0009-9104| volume = 97| issue = Suppl 1| pages = 79–83| last1 = Duhem| first1 = C| last2 = Dicato| first2 = M A| last3 = Ries| first3 = F| title = Side-effects of intravenous immune globulins.| journal = Clinical and Experimental Immunology| accessdate = 2016-12-12| date = July 1994| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1550378/| pmid = 8033440}}</ref>

<ref name="peterson1990">{{Citation| issn = 0002-9343| volume = 89| issue = 5| pages = 554–560| last1 = Peterson| first1 = P. K.| last2 = Shepard| first2 = J.| last3 = Macres| first3 = M.| last4 = Schenck| first4 = C.| last5 = Crosson| first5 = J.| last6 = Rechtman| first6 = D.| last7 = Lurie| first7 = N.| title = A controlled trial of intravenous immunoglobulin G in chronic fatigue syndrome| journal = The American Journal of Medicine| date = November 1990| pmid = 2239975}}</ref>

<ref name="lloyd1990">{{Citation| issn = 0002-9343| volume = 89| issue = 5| pages = 561–568| last1 = Lloyd| first1 = A.| last2 = Hickie| first2 = I.| last3 = Wakefield| first3 = D.| last4 = Boughton| first4 = C.| last5 = Dwyer| first5 = J.| title = A double-blind, placebo-controlled trial of intravenous immunoglobulin therapy in patients with chronic fatigue syndrome| journal = The American Journal of Medicine| date = November 1990| pmid = 2146875}}</ref>

<ref name="iime2008">[http://www.investinme.eu/IIMEC3.shtml#report 3rd Invest in ME International ME Conference 2008 – Report]</ref>

</references>
[[Category:Potential treatments]]
[[Category:Immunomodulators]]

Glossary

2018-05-22T09:51:43Z

Jeshyr:/* O */ Fixing capitalisation

A glossary of *key* ME-related terms.

== 1-10 ==

== A ==

== B ==

== C ==
[[Canadian Consensus Criteria]]

[[Chronic fatigue syndrome|Chronic Fatigue Syndrome]]

crash - (noun) -- see post-exertional malaise

== D ==

== E ==
[[Energy Envelope Theory]]

== F ==

== G ==

== H ==

[[Heart rate monitor]] (HRM) - (noun) a device that measures your heart rate / pulse. Typically a chest strap, wrist strap, or mobile phone app. See also [[Pacing with a heart rate monitor]]

[[Heart rate variability]] (HRV) - a measurement of the specific changes in time (or variability) between successive heart beats. This is related to autonomic and cardiovascular function. See also [[Pacing with a heart rate monitor]]

== I ==
[[International Consensus Criteria]]

== J ==

== K ==

== L ==

== M ==
[[Myalgic encephalomyelitis|Myalgic Encephalomyelitis]]

== N ==

== O ==
[[Orthostatic intolerance]] (OI) -- is the development of symptoms when standing upright which are relieved when reclining

== P ==

[[Pacing]]

[[Pacing with a heart rate monitor]]

[[post-exertional malaise]] (PEM)- (noun) a worsening of ME symptoms due to physical or cognitive exertion

[[post-exertional neuroimmune exhaustion]] -- see post-exertional malaise

[[Postural orthostatic tachycardia syndrome]] (POTS) -- a form of Orthostatic Intolerance where the cardinal symptom is excessive tachycardia from lying to upright position.

[[PwME]] Person with Myalgic Encephalomyelitis

== Q ==

== R ==

== S ==

== T ==

[[Two-day cardiopulmonary exercise test]]

== U ==

== V ==

== W ==

== X ==

== Y ==

== Z ==

CPET

2018-05-22T05:33:08Z

Jeshyr:Fix double redirect

#REDIRECT [[Two-day cardiopulmonary exercise test]]

Cardiopulmonary exercise testing

2018-05-22T05:32:48Z

Jeshyr:Fix double redirect

#redirect [[Two-day cardiopulmonary exercise test]]

Two day exercise test

2018-05-22T05:31:39Z

Jeshyr:Fix double redirect

#REDIRECT [[Two-day cardiopulmonary exercise test]]

2-day CPET

2018-05-22T05:31:10Z

Jeshyr:Fix double-redirect

#REDIRECT [[Two-day cardiopulmonary exercise test]]

[[Category:Tests]]

Two-day cardiopulmonary exercise test

2018-05-22T05:30:12Z

Jeshyr:Removed link to 2-Day CPET which redirects back to here

'''Two-day cardiopulmonary exercise test''' or 2-day CPET is an accepted, reliable test for [[post-exertional malaise]] (PEM), one of the cardinal symptoms that distinguishes between individuals with and without [[ME/CFS]].<ref>Davenport TE, Stevens SR, Baroni K, Van Ness M, Snell CR. (2011). Diagnostic accuracy of symptoms characterising chronic fatigue syndrome. ''Disability and Rehabilitation, 33''(19-20):1768-75. doi: 10.3109/09638288.2010.546936. Epub 2011 Jan 6. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/21208154</ref> The hypothesis is that ME/CFS patients are almost unique in having a severe deterioration in the second of the two cardiopulmonary exercise tests performed on consecutive days.<ref>Logan, Russell. 2-Day CPET: A gold standard test for ME fatigue. (24 Sept 2014). ''Shoutout About ME'' blog. Retrieved from http://www.shoutoutaboutme.com/testing/the-2-day-cpet-a-gold-standard-test-for-mecfs/</ref>

The CPET is the same non-invasive test given to measure the fitness levels of athletics, as well as, people with cardiopulmonary illness.<ref>K Albouaini, M Egred, and A Alahmar, D J Wright. (2007). Cardiopulmonary exercise testing and its application. ''Postgraduate Medical Journal, 83''(985): 675–682. doi: 10.1136/hrt.2007.121558 PMCID: PMC2734442 Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2734442/</ref> However, if the test is repeated 24 hours later, ME/CFS patients will fare significantly worst than they did on the first day. The [[Institute of Medicine report]] states that: "ME/CFS patients have significantly lower results on CPET 2 than on CPET 1 on one or more of the following parameters: VO2max (Keller et al., 2014; VanNess et al., 2007; Vermeulen et al., 2010),<ref name="Vermeulen2010" /> VO2 at ventilatory threshold (Keller et al., 2014), and maximal workload or workload at ventilatory threshold (Keller et al., 2014; Snell et al., 2013)."<ref>Chapter 4, Review of the Evidence on Major ME/CFS Symptoms and Manifestations." Institute of Medicine. ''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.'' Washington, DC: The National Academies Press, 2015. doi:10.17226/19012. Retrieved from http://www.nap.edu/read/19012/chapter/6?term=CPET#83</ref>

Although the [[Institute of Medicine report]] states that 2-day CPET is very reliable to objectively measure [[PEM]], the [[IOM]] committee emphasized "that the CPET is not required to diagnose patients with ME/CFS. Further, this test carries substantial risk for these patients as it may worsen their condition ([[Jo Nijs|Nijs]] et al., 2010; [[Mark VanNess|VanNess]] et al., 2010)."<ref>Chapter 4, Review of the Evidence on Major ME/CFS Symptoms and Manifestations." Institute of Medicine. ''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.'' Washington, DC: The National Academies Press, 2015. doi:10.17226/19012. Retrieved from http://www.nap.edu/read/19012/chapter/6?term=CPET#83</ref>

==Evidence==
*2017, [https://www.ncbi.nlm.nih.gov/pubmed/28782878 Physiological measures in participants with chronic fatigue syndrome, multiple sclerosis and healthy controls following repeated exercise: a pilot study] (Lynette Hodges, T. Nielsen, D. Baken)<ref name="Hodges, 2017"/>
*2014, [https://www.ncbi.nlm.nih.gov/pubmed/24755065 Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO₂peak indicates functional impairment] ([[Betsy Keller]])
*2013, [https://www.ncbi.nlm.nih.gov/pubmed/23813081 Discriminative validity of metabolic and workload measurements for identifying people with chronic fatigue syndrome] ([[Christopher Snell]], [[Staci Stevens]], [[Todd Davenport]], [[Mark VanNess]])

==Cost and availability==
*[[Workwell Foundation]] (United States, CA)
*[[Betsy Keller]] at Ithaca College (United States, NY) Cost is $2200. Because they are based in a college setting (not healthcare setting), they cannot process insurance (including Medicare or Medicaid), so the patient would need to work directly with their insurer about reimbursement. (private email)
*[[Charles Lapp]] and [[Laura Black]], both at Hunter-Hopkins, Charlotte, NC
*[http://www.openmedicineinstitute.org/the-clinic.html Open Medicine Institute Clinic]
*[http://physiologic.com.au/ Physiologic 334 Scottsdale Drive, Robina, Gold Coast, Australia]

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

==Learn more==
*[http://www.workwellfoundation.org/testing-for-disability/ The Workwell Foundation: Testing for Disability]
*2013, [http://www.cortjohnson.org/blog/2013/07/30/busted-exercise-study-finds-energy-production-system-is-broken-in-chronic-fatigue-syndrome/ Busted! Exercise Study Finds Energy Production System is Broken in Chronic Fatigue Syndrome]
*2013, [http://phoenixrising.me/archives/17902/ Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity]
*2007, [http://www.name-us.org/MECFSExplainPages/2007CiccolellaLegalStressTest.pdf Legal and Scientific Considerations of the Exercise Stress Test]

==See also==

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

==References==
<references>
<ref name="Hodges, 2017">
{{Citation
| last1 = Hodges | first1 = Lynette | authorlink1 =
| last2 = Nielsen | first2 = T. | authorlink2 =
| last3 = Baken | first3 = D. | authorlink3 =
| title = Physiological measures in participants with chronic fatigue syndrome, multiple sclerosis and healthy controls following repeated exercise: a pilot study
| journal = Clinical Physiology and Functional Imaging | volume = Aug 2017 | issue = | page =
| date = Aug 2017
| pmid =
| doi = 10.1111/cpf.12460
}}
</ref>
<ref name="Vermeulen2010">
{{Citation
| last1 = Vermeulen | first1 = RC | authorlink1 = RC Vermeulen
| last2 = Kurk | first2 = RM | authorlink2 = RM Kurk
| last3 = Visser | first3 = FC | authorlink3 = Franz Visser
| last4 = Sluiter | first4 = W | authorlink4 = W Sluiter
| last5 = Scholte | first5 = HR | authorlink5 = HR Scholte
| display-authors =
| title = Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity
| journal = J Transl Med | volume = | issue = | page =
| date = October 2010
| pmid = 20937116
| doi = 10.1186/1479-5876-8-93
}}
</ref>

</references>

[[Category:Tests]]

D lactate

2018-05-22T05:22:43Z

Jeshyr:... properly fix broken redirect

#redirect [[D-Lactate]]

D lactate

2018-05-22T05:21:49Z

Jeshyr:Fix broken redirect

#redirect [[D-lactate]]