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User talk:Ashley

2026-04-03T21:05:35Z

JaimeS:

{{Template:Welcome|realName=Ashley Engelund|name=Ashley}}

-- [[User:New user message|New user message]] ([[User talk:New user message|talk]]) 18:04, April 3, 2026 (UTC)

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Science for ME

2026-02-17T16:07:45Z

JaimeS:/* Critical Reception */ - none of the content was consistent with MEpedia guidelines, as it was entirely unsourced. If there are published criticisms, they could be described in such a section; however, this appeared to outline a personal and therefore uncited onus with the group. Please familiarize yourself with MEpedia guidelines before continuing to edit.

[[File:Facebook-profile-picture-v1.1.png|200px|thumb|right]]
[https://www.s4me.info/ Science for ME] (S4ME) is a British website which states that it is "an independent, patient-led, international forum for people with ME/CFS and the carers, clinicians, scientists and advocates who support us."<ref>https://www.facebook.com/pg/sci4me/about/</ref>

S4ME reported that its forum had reached 500 members on December 17th 2017<ref>https://www.s4me.info/index.php?threads/science-for-me-gains-its-500th-member.1557/#post-26245</ref>, and 2,646 members as at August 4th 2021.<ref>{{Cite web|url=https://www.s4me.info/threads/science-for-me-page-on-mepedia.21670/ | title = Science for ME page on MEpedia|website=Science for ME|language=en-US|access-date=2021-08-04}}</ref>

== Notable Forum Members ==
*[[Jonathan Edwards]]
*[[Tom Kindlon]]
*[[Simon McGrath]]
*[[Carolyn Wilshire]]
*[[David Tuller]]

== Researcher Interaction ==
*Video Q&A with Dr [[Sadie Whittaker]] from [[Solve ME/CFS Initiative]], May 2019.<ref>https://youtu.be/eIMDoRvE2yA</ref>
*Written Q&A with Professor [[Chris Ponting]], June 2018.<ref>https://www.s4me.info/threads/science-for-me-written-q-a-with-prof-chris-ponting.4743/</ref>
*Science for ME video Q&A with Dr [[Jose Montoya]], January 2018 <ref>https://youtu.be/FarVtTHmKLc</ref>
*Q&A with team members of the [[UK ME/CFS biobank]], December 14th 2017.<ref>https://www.s4me.info/index.php?threads/uk-me-cfs-biobank-ask-me-anything-thread-thursday-14th-december-2017-2-30-to-3-30pm-gmt-utc.1458/</ref>

== Forum Member Advocacy Projects ==
*Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire <ref>https://www.s4me.info/threads/s4me-submission-to-the-public-review-on-common-data-elements-for-me-cfs-problems-with-the-chalder-fatigue-questionnaire.2065/</ref>
*Open letter to [[NICE]] concerning the Guideline Committee for ME/CFS <ref>https://www.s4me.info/threads/grahams-finalised-letter-to-nice-january-2018.1885/</ref>
*Briefing document - The PACE Trial Controversy: A Summary <ref>https://www.s4me.info/threads/science-for-me-pace-briefing-document.3140/</ref>

== Publicly Visible Forums ==
*[https://www.s4me.info/ Home]
*[https://www.s4me.info/index.php?forums/me-cfs-news-and-research.80/ ME/CFS News and Research]
*[https://www.s4me.info/index.php?forums/other-news-and-research.79/ Other News and Research]
*[https://www.s4me.info/index.php?forums/advocacy.78/ Advocacy]
*[https://www.s4me.info/index.php?forums/symptoms.90/ Symptoms]
*[https://www.s4me.info/index.php?forums/treatments.32/ Treatments]
*[https://www.s4me.info/index.php?forums/doctors-and-diagnostics.77/ Doctors and Diagnostics]
*[https://www.s4me.info/index.php?forums/missed-alternative-or-co-existing-diagnoses.76/ Missed, Alternative or Co-existing Diagnoses]
*[https://www.s4me.info/index.php?forums/living-with-me-cfs.75/ Living with ME/CFS]

==Online presence==
*[https://www.s4me.info/ Website]
*[https://www.twitter.com/s4me_info Twitter]
*[https://www.facebook.com/sci4me/ Facebook]
*[https://www.youtube.com/channel/UCD17E9tRKSy8OByClNu3I6Q YouTube]

== References ==
{{Reflist}}

[[Category:Discussion forums]]
[[Category:Websites]]

Pregabalin

2026-02-03T15:12:33Z

JaimeS:Reverted edit by 169.197.85.172 (talk) to last revision by Notjusttired

[[File:Pregabalin Molecular Structure.png|150x150px|thumb|Pregabalin Molecular Structure]]
Pregabalin, marketed under the brand name [[Lyrica]] among others, is a medication used to treat epilepsy, neuropathic pain, [[fibromyalgia]], generalized anxiety disorder, [https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/symptoms-causes/syc-20371580 diabetic nerve pain], pain after [[shingles]], [[spinal cord]] injury nerve pain, and partial onset [[seizure]]s in adults (an add-on treatment) with [[epilepsy]]. It is very similar to [[gabapentin]], both chemically and pharmacologically.

Lyrica® is manufactured by the US pharmaceutical company, Pfizer, Inc.<ref>{{Cite web|url=https://www.pfizer.com/products/product-detail/lyrica_and_lyrica_cr| title = LYRICA® and LYRICA®CR (pregabalin) and (pregabalin extended release tablets) {{!}} Pfizer: One of the world's premier biopharmaceutical companies|website=pfizer.com|language=en|access-date=2018-08-12}}</ref>
==Side Effects==
[[File:Lyrica 150mg box in Finland 20110618.jpg|alt=Box of Lyrica capsules |thumb|Lyrica is a brand name for pregabelin.]]
This information contains side effect information about pregabalin, Lyrica's active ingredient. Some of the dosage forms listed on this page may not apply to the brand name Lyrica.

Always review a drug company's prescription drug's side effects and possible drug interactions with your doctor and pharmacist.

Pregnant women must always consult with their doctor and pharmacist when taking any prescription drug, over-the-counter drug, supplement, or herbal remedy for side effects, drug interactions, and possible miscarriage, injury, birth defect, addiction, or death to the embryo, fetus, or baby. Breastfeeding women should always talk to their doctor and pharmacist for information about breast milk being laced with the drug she has taken causing side effects, injury, addiction, or death, and drug interactions to the baby consuming her breast milk.

Check with your doctor and pharmacist before using any prescription or over-the-counter drug, supplement, or herbal remedy being administered to a child. Check with your doctor and pharmacist for children's side effects or drug interactions that may not be listed.

=== More commonly reported side effects ===

<div style="column-count:2;">
*Accidental injury
*bloating or swelling of the face, arms, hands, lower legs, or feet
*blurred vision
*burning, tingling, numbness or pain in the hands, arms, feet, or legs
*change in walking and balance
*clumsiness
*confusion
*dementia
*difficulty having a bowel movement
*difficulty with speaking
*double vision
*dry mouth
*false beliefs that cannot be changed by facts
*fever
*headache
*hoarseness
*increased appetite
*lack of coordination
*loss of memory
*lower back or side pain
*painful or difficult urination
*problems with memory
*rapid weight gain
*sensation of pins and needles
*shakiness
*sleepiness
*stabbing pain
*trembling, or other problems with muscle control or coordination
*unsteady walk
*unusual drowsiness
*unusual weight gain or loss<ref name=":0">{{Cite news | url=https://www.drugs.com/sfx/lyrica-side-effects.html| title = Lyrica Side Effects in Detail - Drugs.com|work=Drugs.com|access-date=2018-08-12|language=en-US}}</ref>
</div>

=== Less commonly reported ones are: ===

<div style="column-count:2;">
*Anxiety
*bloated or feeling of fullness
*chest pain
*cold sweats
*cool, pale skin
*cough producing mucus
*decrease or change in vision
*depression
*excess air or gas in the stomach or intestines
*eye disorder
*false or unusual sense of well-being
*general feeling of discomfort or illness
*increased hunger
*loss of appetite
*loss of bladder control
*loss of consciousness
*loss of strength or energy
*muscle aches, twitching or jerking, or weakness
*nausea
*nervousness
*nightmares
*noisy breathing
*pain
*passing gas
*rhythmic movement of the muscles
*runny nose
*seizures
*shivering
*slurred speech
*sweating
*trouble sleeping
*twitching
*uncontrolled eye movements
*vomiting<ref name=":0" />
</div>

=== Other less commonly reported ones are: ===
*Difficult or labored breathing
*tightness in the chest<ref name=":0" />

=== Rarely reported ones are: ===
<div style="column-count:2;">
*Blistering, peeling, or loosening of the skin
*chills
*cough
*diarrhea
*difficulty with swallowing
*dizziness
*fast heartbeat
*hives, itching, skin rash
*joint or muscle pain
*puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue
*red skin lesions, often with a purple center
*red, irritated eyes
*sore throat
*sores, ulcers, or white spots in the mouth or on the lips
*unusual tiredness or weakness<ref name=":0" />
</div>

== Generic legal battle ==
*2012, Pfizer blocked multiple drug manufacturers from selling pregabalin, a generic version of Pfizer's drug Lyrica.<ref name=":2">{{Cite news | url=https://www.reuters.com/article/pfizer-lyrica-ruling-idUSL2E8IJJQV20120719| title = Court upholds Pfizer's Lyrica patent protection | last = | first = | date = 2012-07-19|work=Reuters|access-date=2021-03-09|archive-url=|archive-date=|url-status=|language=en|quote=}}</ref>

*July 2012, the U.S. [[Food and Drug Administration]] (FDA) approved a generic version of Lyrica. Pregabalin, the active ingredient, is the generic name.<ref>{{Cite news | url=https://www.reuters.com/article/us-lupin-lyrica-idUSBRE8640Y220120705| title = U.S. OKs Lupin generic of Pfizer nerve pain drug | last = | first = | date = 2012-07-05|work=Reuters|access-date=2021-03-09|archive-url=|archive-date=|url-status=|language=en|quote=}}</ref> Two weeks after being approved by the FDA, marketing was blocked by Pfizer.<ref name=":2" />

*2014, Pfizer Inc., the maker of Lyrica, successfully blocked the marketing of Pregabalin generics until December of 2018 arguing that the generics should not be marketed and made available until their patent ran out.<ref>{{Cite news | url=https://www.bloomberg.com/news/articles/2014-02-06/pfizer-wins-ruling-to-block-generic-lyrica-until-2018| title = Pfizer Wins Ruling to Block Generic Lyrica Until 2018 | last = Decker | first = Susan | date = Feb 6, 2014|work=Bloomberg Business|access-date=|archive-url=|archive-date=|url-status=}}</ref> Warner-Lamber, (a subsidiary of Pfizer), "still holds a “second medical use” patent for the use of pregabalin in the treatment of peripheral and central neuropathic pain, which expires in July 2017. A second medical use patent is one that relates to a new medical use for a known compound."<ref>{{Cite journal | last = Wise | first = Jacqui | date = 2015-03-30| title = Doctors are warned not to prescribe generic pregabalin for pain control|url=https://www.bmj.com/content/350/bmj.h1724|journal=BMJ|language=en|volume=350|pages=h1724|doi=10.1136/bmj.h1724|issn=1756-1833|pmid=25825288}}</ref>
* Nov 2018, [https://investors.pfizer.com/investor-news/press-release-details/2018/Pfizer-Receives-Six-Months-Pediatric-Exclusivity-for-LYRICA-pregabalin/default.aspx Pfizer Receives Six Months Pediatric Exclusivity For Lyrica® (Pregabalin)]<ref name=":02">{{Cite web|url=https://investors.pfizer.com/investor-news/press-release-details/2018/Pfizer-Receives-Six-Months-Pediatric-Exclusivity-for-LYRICA-pregabalin/default.aspx| title = Pfizer Receives Six Months Pediatric Exclusivity for LYRICA® (pregabalin) | last = | first = | authorlink = | date = Nov 27, 2018 | website = investors.pfizer.com|language=en-US|archive-url=|archive-date=|url-status=|access-date=2018-12-27}}</ref>
<blockquote>Pfizer Inc. (NYSE: PFE) today announced that the U.S. Food and Drug Administration (FDA) has granted pediatric exclusivity for LYRICA<sup>®</sup>. This grant extends the period of U.S. market exclusivity for LYRICA by an additional six months, to June 30, 2019.<ref name=":02" /></blockquote>
* July 22, 1019, FDA approves first generics of Lyrica<ref name=":1">{{Cite web|url=http://www.fda.gov/news-events/press-announcements/fda-approves-first-generics-lyrica | title = FDA approves first generics of Lyrica | last = Commissioner | first=Office of the | date = 2019-09-11 | website = FDA|language=en|access-date=2019-10-11}}</ref>
<blockquote>On July 19, the [[U.S. Food and Drug Administration]] approved multiple applications for first generics of Lyrica (pregabalin) for the management of neuropathic pain associated with diabetic peripheral neuropathy, for the management of postherpetic neuralgia, as an adjunctive therapy for the treatment of partial onset seizures in patients 17 years of age and older, for the management of [[fibromyalgia]], and for the management of neuropathic pain associated with [[spinal cord]] injury.<ref name=":1" /></blockquote>

== Lyrica patient assistance ==
These assistance programs come with various insurance coverage limitations and income thresholds.
*[https://www.lyrica.com/co-pay-savings-card Co-pay Card]
*[https://www.pfizerrxpathways.com/sites/default/files/attachment/GroupDEngMay2017_0.pdf Patient Assistance Program] Check eligibility on [http://www.pfizerrxpathways.com/?step=1 Pfizer Rx Pathways]
== See also ==
*[[Fibromyalgia]]
*[[Neurontin]] (Gabapentin)
*[[Baclofen]]

==Learn more==
* [https://www.youtube.com/watch?v=S3CmUJyVBbQ&feature=youtu.be&t=3m1s Alan Light - Segment 3: Update on Dr. Light's Recent CFS and FM Research]<ref>{{Cite web|url=https://www.youtube.com/watch?v=S3CmUJyVBbQ&feature=youtu.be&t=3m1s| title = Alan Light - Segment 3: Update on Dr. Light's Recent CFS and FM Research | last = | first = | authorlink = Alan Light | date = Feb 22, 2016 | website = YouTube|publisher=Richard Podell|archive-url=|archive-date=|url-status=|access-date=}}</ref>
* [https://www.lyrica.com/frequently-asked-questions Frequently Asked Questions by Lyrica][[Lyrica|<sup>®</sup>]] FAQ's for each condition Lyrica is prescribed for.
* [https://www.painnewsnetwork.org/stories/2017/1/31/lyrica-and-cymbalta-recommended-for-diabetic-neuropathy Lyrica and Cymbalta Recommended for Diabetic Neuropathy]<ref>{{Cite news | url=https://www.painnewsnetwork.org/stories/2017/1/31/lyrica-and-cymbalta-recommended-for-diabetic-neuropathy| title = Lyrica and Cymbalta Advised for Diabetic Neuropathy | last = Anson | first = Pat | date = Jan 31, 2017|work=Pain News Network|access-date=2018-08-12|archive-url=|archive-date=|url-status=|language=en-US}}</ref> (Diabetic nerve pain.)
*[https://www.webmd.com/fibromyalgia/guide/lyrica-for-fibromyalgia-treatment Lyrica for Fibromyalgia]<ref>{{Cite news | url=https://www.webmd.com/fibromyalgia/guide/lyrica-for-fibromyalgia-treatment| title = Lyrica for Fibromyalgia Treatment|work=WebMD|access-date=2018-08-12|language=en-US}}</ref>
*[https://www.sharecare.com/health/fibromyalgia-treatment-medications/lyrica-treat-nerve-pain-shingles How does Lyrica treat nerve pain from shingles?]<ref>{{Cite web|url=https://www.sharecare.com/health/fibromyalgia-treatment-medications/lyrica-treat-nerve-pain-shingles| title = How does Lyrica treat nerve pain from shingles? {{!}} Medications to Treat Fibromyalgia | last = Wiegman | first = Stacy | date = |website=Sharecare|language=en|archive-url=|archive-date=|url-status=|access-date=2018-08-12}}</ref>
*[http://press.pfizer.com/press-release/fda-approves-lyrica-management-neuropathic-pain-associated-spinal-cord-injury-based-pr FDA Approves Lyrica For The Management Of Neuropathic Pain Associated With Spinal Cord Injury Based On Priority Review]<ref>{{Cite web|url=https://press.pfizer.com/press-release/fda-approves-lyrica-management-neuropathic-pain-associated-spinal-cord-injury-based-pr| title = FDA Approves Lyrica For The Management Of Neuropathic Pain Associated With Spinal Cord Injury Based On Priority Review {{!}} Pfizer Pharmaceutical News and Media {{!}} Pfizer: the world's largest research-based pharmaceutical company|website=press.pfizer.com|language=en|access-date=2018-08-12}}</ref>
*[https://www.businesswire.com/news/home/20070301006277/en/FDA-Approves-Pfizers-Lyrica-Epilepsy-Add-On-Treatment FDA Approves Pregabalin as Epilepsy Add-On Treatment for Partial Onset Seizures]<ref>{{Cite news | url=https://www.businesswire.com/news/home/20070301006277/en/FDA-Approves-Pfizers-Lyrica-Epilepsy-Add-On-Treatment| title = FDA Approves Pfizer's Lyrica as Epilepsy Add-On Treatment for Partial Onset Seizures | last = | first = | date = Jan 13, 2005|work=Business Wire|access-date=2018-08-12|archive-url=|archive-date=|url-status=|language=en}}</ref>

== References ==

[[Category:Potential treatments]]
[[Category:Analgesics]]
{{Reflist}}

[[Category:Anticonvulsants]]

Colin McEvedy

2026-01-05T14:08:43Z

JaimeS:/* Benign myalgic encephalomyelitis controversy */ The edit about it being an "easy PhD, why not" is not neutral and does not provide additional evidence as to why the theory is not currently accepted.

{{stub}}
{{NeedsImage}}
Dr '''Colin Peter McEvedy''' (1930-2005) was a British consultant psychiatrist McEvedy best known for his research on [[hysteria]], bubonic plague and the history of [[polio]].<ref name="McEvedyBio">{{Cite journal | last = Richmond | first = Caroline | authorlink = | date = Oct 8, 2005 | title = Colin McEvedy | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1246098/ | journal = BMJ : British Medical Journal|volume=331 | issue = 7520 | pages = 847|issn=0959-8138|pmc=1246098|quote=|via=}}</ref>

==Benign myalgic encephalomyelitis controversy ==
In 1970, Colin McEvedy and fellow psychiatrist [[William Beard|A William Beard]] published an influential study of 15 epidemics of [[myalgic encephalomyelitis]], then known as ''benign myalgic encephalomyelitis'', concluding that the illness was the result of psychosocial phenomena, and caused by either "[[mass hysteria]] on the part of patients" or "altered medical perception of the community".

However, "no patient was examined, no history was taken, not even was there any consultation with any of the senior or junior physicians who had been responsible for examining and treating these injured patients."<ref name=":0">{{Cite web|url=https://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf|title=A new and simple definition of Myalgic Encephalomyelitis and a new simple definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis and an Irreverent History of Chronic Fatigue Syndrome|last=Hyde|first=Byron|authorlink=Byron Hyde|date=May 12, 2006|website=Irish M.E. Trust|archive-url=https://web.archive.org/web/20250609034420/https://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf|archive-date=June 9, 2025}}</ref> McEvedy and Beard supported their conclusions in part due to subjects' sex, saying, "We believe these epidemiological peculiarities — the predilection for young women and for institutions containing an undue proportion of them — provide good positive evidence for mass hysteria as an explanation of the illness.”<ref name="McEvedy-Beard">{{cite journal | date = | title = Concept of Benign Myalgic Encephalomyelitis |url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1700895/ | journal = [[British Medical Journal]]|volume=1 | issue = 5687 | pages = 11–5|doi=10.1136/bmj.1.5687.11|pmc=1700895|pmid=5411596 | last = McEvedy|first = CP|quote= | authorlink = Colin McEvedy | author-link2 = William Beard|via= | last2 = Beard | first2 = AW}}</ref>

The published paper was covered in Time magazine<ref>{{Cite web|url=https://time.com/archive/6816451/behavior-mass-hysteria/|title=Behavior: Mass Hysteria {{!}} TIME|website=time.com|access-date=2025-12-09}}</ref>, and resulted in, "funding [for ME research] from governments and major donors [drying] up and many physicians, perhaps influenced as much by a Time Magazine article as in the British Medical Journal, [turning] their back on this significant illness that was Myalgic Encephalomyelitis."<ref name=":0" />

==Notable studies ==
*1970, Concept of Benign Myalgic Encephalomyelitis<ref name="McEvedy-Beard" /> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1700895/ (Full text)]

==See also ==
* [[History of myalgic encephalomyelitis and chronic fatigue syndrome]]
* [[William Beard]]
* [[Epidemic myalgic encephalomyelitis]]

==Learn more ==
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1246098/ Colin McEvedy (obituary)]

==References ==
{{Reflist}}

[[Category:Researchers]]
[[Category:Psychological paradigm proponents]]
[[Category:UK researchers]]

Dynamic Neural Retraining System

2025-09-15T14:07:52Z

JaimeS:Final changes. Changed direct links to citations (direct links are for internal MEpedia, not for external links). Moved the clinical trial underway out of the "evidence" column as it de facto doesn't have any peer-reviewed evidence to report. (Data was already in previous section anyway.) Likely researchers and patients involved in the trial have been engaged in repeat edits, as the rest of our community tries to "fix". Neither of which was going well.

Annie Hopper created the '''Dynamic Neural Retraining System''' or '''DNRS''' in 2008, and states this is based on her recovery from "severe Multiple Chemical Sensitivity, Fibromyalgia and Electric Hypersensitivity Syndrome".<ref name="team">{{Cite web | url=https://retrainingthebrain.com/meet-the-dnrs-team/ | title = Meet the DNRS™ Team | last = Tozer | first = James|website=Dynamic Neural Retraining System|language=en-CA|access-date=2020-09-23}}</ref> Prior to becoming ill, recovering, and developing DNRS, Annie Hopper was a core beliefs counsellor and weekly newspaper columnist.

==Theory ==
[https://retrainingthebrain.com/ The DNRS website] positions limbic system impairment as the cause of a "maladaptive stress response" which results in symptoms contributes to a variety of different diseases, which the website lists.<ref name="about">{{Cite web|url=https://retrainingthebrain.com/program-information/|title=How The Program Works|last=Hopper|first=Annie|authorlink=|date=|website=Dynamic Neural Retraining System|language=en-CA|archive-url=|archive-date=|url-status=|access-date=2025-09-05}}</ref> Limbic system impairment can have multiple causes; the common result is a type of neurological dysregulation in the brain. This can lead to central sensitization, a condition where the brain and nervous system become hypersensitive, amplifying pain, stress, and normal sensory input. DNRS assists in recovery through mood elevation, desensitization and visualization to facilitate "new, healthy neural pathways".<ref name="about" />

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

The program includes a one-year subscription which includes 12 hours of video tutorials followed by a consistent, regular daily practice. Program registrants commit to 6 months of practice of one hour per day.<ref name="about" />

==ME/CFS ==
The DNRS website claims it can "rewire chronic illness disease patterns in the brain" and that "the program is an effective treatment for [[Multiple chemical sensitivity|chemical sensitivities]], [[chronic fatigue syndrome]], [[fibromyalgia]] and many other chronic illnesses". This rewiring is considered to be reflected through changed symptoms rather than being reliant on objective evidence of changes in brain function or connectivity.<ref name="about" /> Peripheral or [[autonomic nervous system]] changes are not discussed.<ref name="about" />

Evidence for dynamic neural retraining in the peer-reviewed evidence is scant. A 2021 meta-analysis of mind-body intervention studies in ME/CFS could not source any peer-reviewed data on DNRS in ME/CFS despite authors explicitly including related terms in their search.<ref>{{Cite journal|title=Systematic Review of Mind-Body Interventions to Treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2021-06-24|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC8305555/|journal=Medicina|volume=57|issue=7|pages=652|last=Khanpour Ardestani|first=Samaneh|last2=Karkhaneh|first2=Mohammad|last3=Stein|first3=Eleanor|last4=Punja|first4=Salima|last5=Junqueira|first5=Daniela R.|last6=Kuzmyn|first6=Tatiana|last7=Pearson|first7=Michelle|last8=Smith|first8=Laurie|last9=Olson|first9=Karin|last10=Vohra|first10=Sunita|language=en|doi=10.3390/medicina57070652|issn=1648-9144}}</ref> There appear to be no trials of DNRS in ME/CFS in the published literature as of 2025.
==Risks and safety ==
Since no clinical trials have been conducted on DNRS therapies in ME/CFS, it is challenging to state what risks it and similar treatment modalities present.<ref name="about" /><ref name="Guenter2019" />

Patients who fail to improve through DNRS and similar programs discuss feelings of guilt, as these and similar systems frame recovery as within the patient's control, even in literature that views these interventions in a positive light.<ref>{{Cite journal|title=Towards a Better Understanding of the Complexities of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID|date=2023-03-07|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC10048882/|journal=International Journal of Molecular Sciences|volume=24|issue=6|pages=5124|last=Tate|first=Warren P.|last2=Walker|first2=Max O. M.|last3=Peppercorn|first3=Katie|last4=Blair|first4=Anna L. H.|last5=Edgar|first5=Christina D.|language=en|doi=10.3390/ijms24065124|issn=1422-0067}}</ref>

A clinical trial is underway to study the effect of a mind-body treatment for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with or without Long COVID (LC). The study aims to test both subjective measures (questionnaires) and objective measures (metabolomics and gut microbiome), measuring before and after DNR. No publications have been produced from this study as of late 2025, as it is still underway.<ref>{{Cite web|url=https://clinicaltrials.gov/study/NCT06933173|title=ClinicalTrials.gov|website=clinicaltrials.gov|language=en|access-date=2025-09-15}}</ref>

==Evidence ==
In an unpublished presentation found on the DNRS website, brain imaging or brain function tests were not used to assess neuroplasticity after the DNRS course, and all results were based on patient questionnaires.<ref name="Guenter2019">{{Citation|vauthors=Guenter et al | first = | title = Neuroplasticity-based treatment for fibromyalgia, chronic fatigue and multiple chemical sensitivity: feasibility and outcomes| publisher = | date = 2019 | url=|volume=|issue=| pages=|chapter=|edition= | last2 = | first2 = }}</ref>

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

==Learn more ==
*[https://clinicaltrials.gov/study/NCT06933173 Clinical Trial,] Mind-Body in Long COVID and Myalgic Encephalomyelitis Study (MILES): A Patient-Centred RCT
*[https://paradigmchange.me/wp/retraining/ Some Comments on So-Called “Brain Retraining” Programs] - Psychologist Lisa Petrison comments on the unproven claims and potential harm - Paradigmchange.me
*[https://retrainingthebrain.com/how-the-program-works/ How the program works - DNRS]
*[https://www.virology.ws/2020/09/02/trial-by-error-what-is-the-dynamic-neural-retraining-system/ Trial By Error: What Is the Dynamic Neural Retraining System?] - [[Virology blog]]

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

==References ==
{{Reflist}}

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

Dynamic Neural Retraining System

2025-09-15T13:56:37Z

JaimeS:/* Risks and safety */ since I'm locking this page, I'm giving it a final going-over

Annie Hopper created the '''Dynamic Neural Retraining System''' or '''DNRS''' in 2008, and states this is based on her recovery from "severe Multiple Chemical Sensitivity, Fibromyalgia and Electric Hypersensitivity Syndrome".<ref name="team">{{Cite web | url=https://retrainingthebrain.com/meet-the-dnrs-team/ | title = Meet the DNRS™ Team | last = Tozer | first = James|website=Dynamic Neural Retraining System|language=en-CA|access-date=2020-09-23}}</ref> Prior to becoming ill, recovering, and developing DNRS, Annie Hopper was a core beliefs counsellor and weekly newspaper columnist.

==Theory ==
[https://retrainingthebrain.com/ The DNRS website] positions limbic system impairment as the cause of a "maladaptive stress response" which results in complex chronic conditions, which the website lists.<ref name="about">{{Cite web|url=https://retrainingthebrain.com/program-information/|title=How The Program Works|last=Hopper|first=Annie|authorlink=|date=|website=Dynamic Neural Retraining System|language=en-CA|archive-url=|archive-date=|url-status=|access-date=2025-09-05}}</ref> Limbic system impairment can have multiple causes; the common result is a type of neurological dysregulation in the brain. This can lead to central sensitization, a condition where the brain and nervous system become hypersensitive, amplifying pain, stress, and normal sensory input. DNRS assists in recovery through mood elevation, desensitization and visualization to facilitate "new, healthy neural pathways".<ref name="about" />

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

The program includes a one-year subscription which includes 12 hours of video tutorials followed by a consistent, regular daily practice. Program registrants commit to 6 months of practice of one hour per day.<ref name="about" />

==ME/CFS ==
The DNRS website claims it can "rewire chronic illness disease patterns in the brain" and that "the program is an effective treatment for [[Multiple chemical sensitivity|chemical sensitivities]], [[chronic fatigue syndrome]], [[fibromyalgia]] and many other chronic illnesses". This rewiring is considered to be reflected through changed symptoms rather than being reliant on objective evidence of changes in brain function or connectivity.<ref name="about" /> Peripheral or [[autonomic nervous system]] changes are not discussed.<ref name="about" />

Evidence for dynamic neural retraining in the peer-reviewed evidence is scant. A 2021 meta-analysis of mind-body intervention studies in ME/CFS could not source any peer-reviewed data on DNRS in ME/CFS despite authors explicitly including related terms in their search.<ref>{{Cite journal|title=Systematic Review of Mind-Body Interventions to Treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2021-06-24|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC8305555/|journal=Medicina|volume=57|issue=7|pages=652|last=Khanpour Ardestani|first=Samaneh|last2=Karkhaneh|first2=Mohammad|last3=Stein|first3=Eleanor|last4=Punja|first4=Salima|last5=Junqueira|first5=Daniela R.|last6=Kuzmyn|first6=Tatiana|last7=Pearson|first7=Michelle|last8=Smith|first8=Laurie|last9=Olson|first9=Karin|last10=Vohra|first10=Sunita|language=en|doi=10.3390/medicina57070652|issn=1648-9144}}</ref> There appear to be no trials of DNRS in ME/CFS in the published literature as of 2025.
==Risks and safety ==
As of yet, there is no direct research to connect mind-body interventions (MBIs) and how it refocuses the brain, mind, body, and behaviour to interact and improve health and well-being. it is therefore not possible to state what risks it and similar treatment modalities present.<ref name="about" /><ref name="Guenter2019" />

While some individuals may experience feelings of guilt if they do not see the improvements they hope for through DNRS or similar programs, it is important to recognize that recovery is influenced by a wide range of personal variables. These approaches emphasize individual empowerment, and responses can differ greatly depending on each person’s unique circumstances. Everyone’s health journey is unique. Prior to beginning a new treatment, it is advisable to consult with your health care provider. <ref>{{Cite journal|title=Towards a Better Understanding of the Complexities of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID|date=2023-03-07|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC10048882/|journal=International Journal of Molecular Sciences|volume=24|issue=6|pages=5124|last=Tate|first=Warren P.|last2=Walker|first2=Max O. M.|last3=Peppercorn|first3=Katie|last4=Blair|first4=Anna L. H.|last5=Edgar|first5=Christina D.|language=en|doi=10.3390/ijms24065124|issn=1422-0067}}</ref>

A [https://clinicaltrials.gov/study/NCT06933173 clinical trial] is underway to study the effect of a mind-body treatment for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with or without Long COVID (LC). A

==Evidence ==
The University of Alberta opened a [https://clinicaltrials.gov/study/NCT06933173 clinical trial on DNRS] in July of 2025 to measure the effectiveness or potential risks of DNRS, and to determine how the brain is "rewired" or "retrained" or that neural networks within the brain are altered by the treatment.<ref name="about" />

In an unpublished presentation found on the DNRS website, brain imaging or brain function tests were not used to assess neuroplasticity after the DNRS course, and all results were based on patient questionnaires.<ref name="Guenter2019">{{Citation|vauthors=Guenter et al | first = | title = Neuroplasticity-based treatment for fibromyalgia, chronic fatigue and multiple chemical sensitivity: feasibility and outcomes| publisher = | date = 2019 | url=|volume=|issue=| pages=|chapter=|edition= | last2 = | first2 = }}</ref>

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

==Learn more ==
*[https://clinicaltrials.gov/study/NCT06933173 Clinical Trial,] Mind-Body in Long COVID and Myalgic Encephalomyelitis Study (MILES): A Patient-Centred RCT
*[https://paradigmchange.me/wp/retraining/ Some Comments on So-Called “Brain Retraining” Programs] - Psychologist Lisa Petrison comments on the unproven claims and potential harm - Paradigmchange.me
*[https://retrainingthebrain.com/how-the-program-works/ How the program works - DNRS]
*[https://www.virology.ws/2020/09/02/trial-by-error-what-is-the-dynamic-neural-retraining-system/ Trial By Error: What Is the Dynamic Neural Retraining System?] - [[Virology blog]]

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

==References ==
{{Reflist}}

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

Dynamic Neural Retraining System

2025-09-15T13:53:05Z

JaimeS:changed the emotive "healing" to 'recovery'.

Annie Hopper created the '''Dynamic Neural Retraining System''' or '''DNRS''' in 2008, and states this is based on her recovery from "severe Multiple Chemical Sensitivity, Fibromyalgia and Electric Hypersensitivity Syndrome".<ref name="team">{{Cite web | url=https://retrainingthebrain.com/meet-the-dnrs-team/ | title = Meet the DNRS™ Team | last = Tozer | first = James|website=Dynamic Neural Retraining System|language=en-CA|access-date=2020-09-23}}</ref> Prior to becoming ill, recovering, and developing DNRS, Annie Hopper was a core beliefs counsellor and weekly newspaper columnist.

==Theory ==
[https://retrainingthebrain.com/ The DNRS website] positions limbic system impairment as the cause of a "maladaptive stress response" which results in complex chronic conditions, which the website lists.<ref name="about">{{Cite web|url=https://retrainingthebrain.com/program-information/|title=How The Program Works|last=Hopper|first=Annie|authorlink=|date=|website=Dynamic Neural Retraining System|language=en-CA|archive-url=|archive-date=|url-status=|access-date=2025-09-05}}</ref> Limbic system impairment can have multiple causes; the common result is a type of neurological dysregulation in the brain. This can lead to central sensitization, a condition where the brain and nervous system become hypersensitive, amplifying pain, stress, and normal sensory input. DNRS assists in recovery through mood elevation, desensitization and visualization to facilitate "new, healthy neural pathways".<ref name="about" />

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

The program includes a one-year subscription which includes 12 hours of video tutorials followed by a consistent, regular daily practice. Program registrants commit to 6 months of practice of one hour per day.<ref name="about" />

==ME/CFS ==
The DNRS website claims it can "rewire chronic illness disease patterns in the brain" and that "the program is an effective treatment for [[Multiple chemical sensitivity|chemical sensitivities]], [[chronic fatigue syndrome]], [[fibromyalgia]] and many other chronic illnesses". This rewiring is considered to be reflected through changed symptoms rather than being reliant on objective evidence of changes in brain function or connectivity.<ref name="about" /> Peripheral or [[autonomic nervous system]] changes are not discussed.<ref name="about" />

Evidence for dynamic neural retraining in the peer-reviewed evidence is scant. A 2021 meta-analysis of mind-body intervention studies in ME/CFS could not source any peer-reviewed data on DNRS in ME/CFS despite authors explicitly including related terms in their search.<ref>{{Cite journal|title=Systematic Review of Mind-Body Interventions to Treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2021-06-24|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC8305555/|journal=Medicina|volume=57|issue=7|pages=652|last=Khanpour Ardestani|first=Samaneh|last2=Karkhaneh|first2=Mohammad|last3=Stein|first3=Eleanor|last4=Punja|first4=Salima|last5=Junqueira|first5=Daniela R.|last6=Kuzmyn|first6=Tatiana|last7=Pearson|first7=Michelle|last8=Smith|first8=Laurie|last9=Olson|first9=Karin|last10=Vohra|first10=Sunita|language=en|doi=10.3390/medicina57070652|issn=1648-9144}}</ref> There appear to be no trials of DNRS in ME/CFS in the published literature as of 2025.
==Risks and safety ==
A [https://clinicaltrials.gov/study/NCT06933173 clinical trial] is underway to study the effect of a mind-body treatment for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with or without Long COVID (LC). As of yet, there is no direct research to connect mind-body interventions (MBIs) and how it refocuses the brain, mind, body, and behaviour to interact and improve health and well-being. it is therefore unclear to state what risks it and similar treatment modalities present.<ref name="about" /><ref name="Guenter2019" />

While some individuals may experience feelings of guilt if they do not see the improvements they hope for through DNRS or similar programs, it is important to recognize that recovery is influenced by a wide range of personal variables. These approaches emphasize individual empowerment, and responses can differ greatly depending on each person’s unique circumstances. Everyone’s health journey is unique. Prior to beginning a new treatment, it is advisable to consult with your health care provider. <ref>{{Cite journal|title=Towards a Better Understanding of the Complexities of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID|date=2023-03-07|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC10048882/|journal=International Journal of Molecular Sciences|volume=24|issue=6|pages=5124|last=Tate|first=Warren P.|last2=Walker|first2=Max O. M.|last3=Peppercorn|first3=Katie|last4=Blair|first4=Anna L. H.|last5=Edgar|first5=Christina D.|language=en|doi=10.3390/ijms24065124|issn=1422-0067}}</ref>

==Evidence ==
The University of Alberta opened a [https://clinicaltrials.gov/study/NCT06933173 clinical trial on DNRS] in July of 2025 to measure the effectiveness or potential risks of DNRS, and to determine how the brain is "rewired" or "retrained" or that neural networks within the brain are altered by the treatment.<ref name="about" />

In an unpublished presentation found on the DNRS website, brain imaging or brain function tests were not used to assess neuroplasticity after the DNRS course, and all results were based on patient questionnaires.<ref name="Guenter2019">{{Citation|vauthors=Guenter et al | first = | title = Neuroplasticity-based treatment for fibromyalgia, chronic fatigue and multiple chemical sensitivity: feasibility and outcomes| publisher = | date = 2019 | url=|volume=|issue=| pages=|chapter=|edition= | last2 = | first2 = }}</ref>

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

==Learn more ==
*[https://clinicaltrials.gov/study/NCT06933173 Clinical Trial,] Mind-Body in Long COVID and Myalgic Encephalomyelitis Study (MILES): A Patient-Centred RCT
*[https://paradigmchange.me/wp/retraining/ Some Comments on So-Called “Brain Retraining” Programs] - Psychologist Lisa Petrison comments on the unproven claims and potential harm - Paradigmchange.me
*[https://retrainingthebrain.com/how-the-program-works/ How the program works - DNRS]
*[https://www.virology.ws/2020/09/02/trial-by-error-what-is-the-dynamic-neural-retraining-system/ Trial By Error: What Is the Dynamic Neural Retraining System?] - [[Virology blog]]

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

==References ==
{{Reflist}}

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

Dynamic Neural Retraining System

2025-09-15T13:52:26Z

JaimeS:Protected "Dynamic Neural Retraining System":Excessive vandalism/advertising/spam:This page is subject to frequent, non-neutral editing by both promoters and detractors. If a new study is created in this domain, an admin will add it. ([Edit=Allow only administrators (full protection)] (indefinite) [Move=Allow only administrators (full protection)] (indefinite))

Annie Hopper created the '''Dynamic Neural Retraining System''' or '''DNRS''' in 2008, and states this is based on her recovery from "severe Multiple Chemical Sensitivity, Fibromyalgia and Electric Hypersensitivity Syndrome".<ref name="team">{{Cite web | url=https://retrainingthebrain.com/meet-the-dnrs-team/ | title = Meet the DNRS™ Team | last = Tozer | first = James|website=Dynamic Neural Retraining System|language=en-CA|access-date=2020-09-23}}</ref> Prior to becoming ill, healing and developing DNRS, Annie Hopper was a core beliefs counsellor and weekly newspaper columnist.

==Theory ==
[https://retrainingthebrain.com/ The DNRS website] positions limbic system impairment as the cause of a "maladaptive stress response" which results in complex chronic conditions, which the website lists.<ref name="about">{{Cite web|url=https://retrainingthebrain.com/program-information/|title=How The Program Works|last=Hopper|first=Annie|authorlink=|date=|website=Dynamic Neural Retraining System|language=en-CA|archive-url=|archive-date=|url-status=|access-date=2025-09-05}}</ref> Limbic system impairment can have multiple causes; the common result is a type of neurological dysregulation in the brain. This can lead to central sensitization, a condition where the brain and nervous system become hypersensitive, amplifying pain, stress, and normal sensory input. DNRS assists in recovery through mood elevation, desensitization and visualization to facilitate "new, healthy neural pathways".<ref name="about" />

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

The program includes a one-year subscription which includes 12 hours of video tutorials followed by a consistent, regular daily practice. Program registrants commit to 6 months of practice of one hour per day.<ref name="about" />

==ME/CFS ==
The DNRS website claims it can "rewire chronic illness disease patterns in the brain" and that "the program is an effective treatment for [[Multiple chemical sensitivity|chemical sensitivities]], [[chronic fatigue syndrome]], [[fibromyalgia]] and many other chronic illnesses". This rewiring is considered to be reflected through changed symptoms rather than being reliant on objective evidence of changes in brain function or connectivity.<ref name="about" /> Peripheral or [[autonomic nervous system]] changes are not discussed.<ref name="about" />

Evidence for dynamic neural retraining in the peer-reviewed evidence is scant. A 2021 meta-analysis of mind-body intervention studies in ME/CFS could not source any peer-reviewed data on DNRS in ME/CFS despite authors explicitly including related terms in their search.<ref>{{Cite journal|title=Systematic Review of Mind-Body Interventions to Treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2021-06-24|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC8305555/|journal=Medicina|volume=57|issue=7|pages=652|last=Khanpour Ardestani|first=Samaneh|last2=Karkhaneh|first2=Mohammad|last3=Stein|first3=Eleanor|last4=Punja|first4=Salima|last5=Junqueira|first5=Daniela R.|last6=Kuzmyn|first6=Tatiana|last7=Pearson|first7=Michelle|last8=Smith|first8=Laurie|last9=Olson|first9=Karin|last10=Vohra|first10=Sunita|language=en|doi=10.3390/medicina57070652|issn=1648-9144}}</ref> There appear to be no trials of DNRS in ME/CFS in the published literature as of 2025.
==Risks and safety ==
A [https://clinicaltrials.gov/study/NCT06933173 clinical trial] is underway to study the effect of a mind-body treatment for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with or without Long COVID (LC). As of yet, there is no direct research to connect mind-body interventions (MBIs) and how it refocuses the brain, mind, body, and behaviour to interact and improve health and well-being. it is therefore unclear to state what risks it and similar treatment modalities present.<ref name="about" /><ref name="Guenter2019" />

While some individuals may experience feelings of guilt if they do not see the improvements they hope for through DNRS or similar programs, it is important to recognize that recovery is influenced by a wide range of personal variables. These approaches emphasize individual empowerment, and responses can differ greatly depending on each person’s unique circumstances. Everyone’s health journey is unique. Prior to beginning a new treatment, it is advisable to consult with your health care provider. <ref>{{Cite journal|title=Towards a Better Understanding of the Complexities of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID|date=2023-03-07|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC10048882/|journal=International Journal of Molecular Sciences|volume=24|issue=6|pages=5124|last=Tate|first=Warren P.|last2=Walker|first2=Max O. M.|last3=Peppercorn|first3=Katie|last4=Blair|first4=Anna L. H.|last5=Edgar|first5=Christina D.|language=en|doi=10.3390/ijms24065124|issn=1422-0067}}</ref>

==Evidence ==
The University of Alberta opened a [https://clinicaltrials.gov/study/NCT06933173 clinical trial on DNRS] in July of 2025 to measure the effectiveness or potential risks of DNRS, and to determine how the brain is "rewired" or "retrained" or that neural networks within the brain are altered by the treatment.<ref name="about" />

In an unpublished presentation found on the DNRS website, brain imaging or brain function tests were not used to assess neuroplasticity after the DNRS course, and all results were based on patient questionnaires.<ref name="Guenter2019">{{Citation|vauthors=Guenter et al | first = | title = Neuroplasticity-based treatment for fibromyalgia, chronic fatigue and multiple chemical sensitivity: feasibility and outcomes| publisher = | date = 2019 | url=|volume=|issue=| pages=|chapter=|edition= | last2 = | first2 = }}</ref>

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

==Learn more ==
*[https://clinicaltrials.gov/study/NCT06933173 Clinical Trial,] Mind-Body in Long COVID and Myalgic Encephalomyelitis Study (MILES): A Patient-Centred RCT
*[https://paradigmchange.me/wp/retraining/ Some Comments on So-Called “Brain Retraining” Programs] - Psychologist Lisa Petrison comments on the unproven claims and potential harm - Paradigmchange.me
*[https://retrainingthebrain.com/how-the-program-works/ How the program works - DNRS]
*[https://www.virology.ws/2020/09/02/trial-by-error-what-is-the-dynamic-neural-retraining-system/ Trial By Error: What Is the Dynamic Neural Retraining System?] - [[Virology blog]]

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

==References ==
{{Reflist}}

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

Dynamic Neural Retraining System

2025-09-12T14:27:00Z

JaimeS:/* Evidence */ Changed some of the wording to be more neutral (again). The page is in a good place for clarity and I'm inclined to lock it.

Annie Hopper created the '''Dynamic Neural Retraining System''' or '''DNRS''' in 2008, and states this is based on her recovery from "severe Multiple Chemical Sensitivity, Fibromyalgia and Electric Hypersensitivity Syndrome".<ref name="team">{{Cite web | url=https://retrainingthebrain.com/meet-the-dnrs-team/ | title = Meet the DNRS™ Team | last = Tozer | first = James|website=Dynamic Neural Retraining System|language=en-CA|access-date=2020-09-23}}</ref> Prior to becoming ill, healing and developing DNRS, Annie Hopper was a core beliefs counsellor and weekly newspaper columnist.

==Theory ==
[https://retrainingthebrain.com/ The DNRS website] positions limbic system impairment as the cause of a "maladaptive stress response" which results in complex chronic conditions, which the website lists.<ref name="about">{{Cite web|url=https://retrainingthebrain.com/program-information/|title=How The Program Works|last=Hopper|first=Annie|authorlink=|date=|website=Dynamic Neural Retraining System|language=en-CA|archive-url=|archive-date=|url-status=|access-date=2025-09-05}}</ref> Limbic system impairment can have multiple causes; the common result is a type of neurological dysregulation in the brain. This can lead to central sensitization, a condition where the brain and nervous system become hypersensitive, amplifying pain, stress, and normal sensory input. DNRS assists in recovery through mood elevation, desensitization and visualization to facilitate "new, healthy neural pathways".<ref name="about" />

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

The program includes a one-year subscription which includes 12 hours of video tutorials followed by a consistent, regular daily practice. Program registrants commit to 6 months of practice of one hour per day.<ref name="about" />

==ME/CFS ==
The DNRS website claims it can "rewire chronic illness disease patterns in the brain" and that "the program is an effective treatment for [[Multiple chemical sensitivity|chemical sensitivities]], [[chronic fatigue syndrome]], [[fibromyalgia]] and many other chronic illnesses". This rewiring is considered to be reflected through changed symptoms rather than being reliant on objective evidence of changes in brain function or connectivity.<ref name="about" /> Peripheral or [[autonomic nervous system]] changes are not discussed.<ref name="about" />

Evidence for dynamic neural retraining in the peer-reviewed evidence is scant. A 2021 meta-analysis of mind-body intervention studies in ME/CFS could not source any peer-reviewed data on DNRS in ME/CFS despite authors explicitly including related terms in their search.<ref>{{Cite journal|title=Systematic Review of Mind-Body Interventions to Treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2021-06-24|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC8305555/|journal=Medicina|volume=57|issue=7|pages=652|last=Khanpour Ardestani|first=Samaneh|last2=Karkhaneh|first2=Mohammad|last3=Stein|first3=Eleanor|last4=Punja|first4=Salima|last5=Junqueira|first5=Daniela R.|last6=Kuzmyn|first6=Tatiana|last7=Pearson|first7=Michelle|last8=Smith|first8=Laurie|last9=Olson|first9=Karin|last10=Vohra|first10=Sunita|language=en|doi=10.3390/medicina57070652|issn=1648-9144}}</ref> There appear to be no trials of DNRS in ME/CFS in the published literature as of 2025.
==Risks and safety ==
A [https://clinicaltrials.gov/study/NCT06933173 clinical trial] is underway to study the effect of a mind-body treatment for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with or without Long COVID (LC). As of yet, there is no direct research to connect mind-body interventions (MBIs) and how it refocuses the brain, mind, body, and behaviour to interact and improve health and well-being. it is therefore unclear to state what risks it and similar treatment modalities present.<ref name="about" /><ref name="Guenter2019" />

While some individuals may experience feelings of guilt if they do not see the improvements they hope for through DNRS or similar programs, it is important to recognize that recovery is influenced by a wide range of personal variables. These approaches emphasize individual empowerment, and responses can differ greatly depending on each person’s unique circumstances. Everyone’s health journey is unique. Prior to beginning a new treatment, it is advisable to consult with your health care provider. <ref>{{Cite journal|title=Towards a Better Understanding of the Complexities of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID|date=2023-03-07|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC10048882/|journal=International Journal of Molecular Sciences|volume=24|issue=6|pages=5124|last=Tate|first=Warren P.|last2=Walker|first2=Max O. M.|last3=Peppercorn|first3=Katie|last4=Blair|first4=Anna L. H.|last5=Edgar|first5=Christina D.|language=en|doi=10.3390/ijms24065124|issn=1422-0067}}</ref>

==Evidence ==
The University of Alberta opened a [https://clinicaltrials.gov/study/NCT06933173 clinical trial on DNRS] in July of 2025 to measure the effectiveness or potential risks of DNRS, and to determine how the brain is "rewired" or "retrained" or that neural networks within the brain are altered by the treatment.<ref name="about" />

In an unpublished presentation found on the DNRS website, brain imaging or brain function tests were not used to assess neuroplasticity after the DNRS course, and all results were based on patient questionnaires.<ref name="Guenter2019">{{Citation|vauthors=Guenter et al | first = | title = Neuroplasticity-based treatment for fibromyalgia, chronic fatigue and multiple chemical sensitivity: feasibility and outcomes| publisher = | date = 2019 | url=|volume=|issue=| pages=|chapter=|edition= | last2 = | first2 = }}</ref>

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

==Learn more ==
*[https://clinicaltrials.gov/study/NCT06933173 Clinical Trial,] Mind-Body in Long COVID and Myalgic Encephalomyelitis Study (MILES): A Patient-Centred RCT
*[https://paradigmchange.me/wp/retraining/ Some Comments on So-Called “Brain Retraining” Programs] - Psychologist Lisa Petrison comments on the unproven claims and potential harm - Paradigmchange.me
*[https://retrainingthebrain.com/how-the-program-works/ How the program works - DNRS]
*[https://www.virology.ws/2020/09/02/trial-by-error-what-is-the-dynamic-neural-retraining-system/ Trial By Error: What Is the Dynamic Neural Retraining System?] - [[Virology blog]]

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

==References ==
{{Reflist}}

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

Dynamic Neural Retraining System

2025-08-25T14:12:23Z

JaimeS:/* ME/CFS */

Annie Hopper created the '''Dynamic Neural Retraining System''' or '''DNRS''' in 2008, and states this is based on her recovery from "severe Multiple Chemical Sensitivity, Fibromyalgia and Electric Hypersensitivity Syndrome".<ref name="team">{{Cite web | url=https://retrainingthebrain.com/meet-the-dnrs-team/ | title = Meet the DNRS™ Team | last = Tozer | first = James|website=Dynamic Neural Retraining System|language=en-CA|access-date=2020-09-23}}</ref> Prior to becoming ill, healing and developing DNRS, Annie Hopper was a core beliefs counsellor and weekly newspaper columnist.

==Theory ==
[https://retrainingthebrain.com/ The DNRS website] positions limbic system impairment as the cause of brain changes, and that this causes a "maladaptive stress response" which then causes certain physical symptoms, which the website lists.<ref name="about">{{Cite web|url=https://retrainingthebrain.com/how-the-program-works/|title=How The Program Works|last=Tozer|first=James|authorlink=|date=|website=Dynamic Neural Retraining System|language=en-CA|archive-url=|archive-date=|url-status=|access-date=2020-09-23}}</ref> Limbic system impairment can have multiple causes; the common result is a type of neurological dysregulation in the brain. This can lead to central sensitization, a condition where the brain and nervous system become hypersensitive, amplifying pain, stress, and normal sensory input. DNRS assists in recovery through mood elevation, desensitization and visualization to facilitate "new, healthy neural pathways".<ref name="about" />

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

The program includes a one-year subscription which includes 12 hours of video tutorials followed by a consistent, regular daily practice. Program registrants commit to 6 months of practice of one hour per day.<ref name="about" />

==ME/CFS ==
The DNRS website claims it can "rewire chronic illness disease patterns in the brain" and that "the program is an effective treatment for [[Multiple chemical sensitivity|chemical sensitivities]], [[chronic fatigue syndrome]], [[fibromyalgia]] and many other chronic illnesses". This rewiring is considered to be reflected through changed symptoms rather than being reliant on objective evidence of changes in brain function or connectivity.<ref name="about" /> Peripheral or [[autonomic nervous system]] changes are not discussed.<ref name="about" />

Evidence for dynamic neural retraining in the peer-reviewed evidence is scant. A 2021 meta-analysis of mind-body intervention studies in ME/CFS could not source any peer-reviewed data on DNRS in ME/CFS despite authors explicitly including related terms in their search.<ref>{{Cite journal|title=Systematic Review of Mind-Body Interventions to Treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2021-06-24|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC8305555/|journal=Medicina|volume=57|issue=7|pages=652|last=Khanpour Ardestani|first=Samaneh|last2=Karkhaneh|first2=Mohammad|last3=Stein|first3=Eleanor|last4=Punja|first4=Salima|last5=Junqueira|first5=Daniela R.|last6=Kuzmyn|first6=Tatiana|last7=Pearson|first7=Michelle|last8=Smith|first8=Laurie|last9=Olson|first9=Karin|last10=Vohra|first10=Sunita|language=en|doi=10.3390/medicina57070652|issn=1648-9144}}</ref> There appear to be no trials of DNRS in ME/CFS in the published literature as of 2025.
==Risks and safety ==
Since no clinical trials have been conducted on DNRS therapies in ME/CFS, it is challenging to state what risks it and similar treatment modalities present.<ref name="about" /><ref name="Guenter2019" />

It is generally acknowledged that patients who fail to improve through DNRS and similar programs discuss feelings of guilt, as these and similar systems frame recovery as within the patient's control, even in literature that views these interventions in a positive light.<ref>{{Cite journal|title=Towards a Better Understanding of the Complexities of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID|date=2023-03-07|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC10048882/|journal=International Journal of Molecular Sciences|volume=24|issue=6|pages=5124|last=Tate|first=Warren P.|last2=Walker|first2=Max O. M.|last3=Peppercorn|first3=Katie|last4=Blair|first4=Anna L. H.|last5=Edgar|first5=Christina D.|language=en|doi=10.3390/ijms24065124|issn=1422-0067}}</ref>

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

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

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

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

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

==References ==
{{Reflist}}

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

Dynamic Neural Retraining System

2025-08-25T14:08:58Z

JaimeS:/* ME/CFS */ added a LITTLE emphasis back re: there are no published trials of DNRS.

Annie Hopper created the '''Dynamic Neural Retraining System''' or '''DNRS''' in 2008, and states this is based on her recovery from "severe Multiple Chemical Sensitivity, Fibromyalgia and Electric Hypersensitivity Syndrome".<ref name="team">{{Cite web | url=https://retrainingthebrain.com/meet-the-dnrs-team/ | title = Meet the DNRS™ Team | last = Tozer | first = James|website=Dynamic Neural Retraining System|language=en-CA|access-date=2020-09-23}}</ref> Prior to becoming ill, healing and developing DNRS, Annie Hopper was a core beliefs counsellor and weekly newspaper columnist.

==Theory ==
[https://retrainingthebrain.com/ The DNRS website] positions limbic system impairment as the cause of brain changes, and that this causes a "maladaptive stress response" which then causes certain physical symptoms, which the website lists.<ref name="about">{{Cite web|url=https://retrainingthebrain.com/how-the-program-works/|title=How The Program Works|last=Tozer|first=James|authorlink=|date=|website=Dynamic Neural Retraining System|language=en-CA|archive-url=|archive-date=|url-status=|access-date=2020-09-23}}</ref> Limbic system impairment can have multiple causes; the common result is a type of neurological dysregulation in the brain. This can lead to central sensitization, a condition where the brain and nervous system become hypersensitive, amplifying pain, stress, and normal sensory input. DNRS assists in recovery through mood elevation, desensitization and visualization to facilitate "new, healthy neural pathways".<ref name="about" />

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

The program includes a one-year subscription which includes 12 hours of video tutorials followed by a consistent, regular daily practice. Program registrants commit to 6 months of practice of one hour per day.<ref name="about" />

==ME/CFS ==
The DNRS website claims it can "rewire chronic illness disease patterns in the brain" and that "the program is an effective treatment for [[Multiple chemical sensitivity|chemical sensitivities]], [[chronic fatigue syndrome]], [[fibromyalgia]] and many other chronic illnesses". This rewiring is considered to be reflected through changed symptoms rather than being reliant on objective evidence of changes in brain function or connectivity.<ref name="about" /> Peripheral or [[autonomic nervous system]] changes are not discussed.<ref name="about" />

Evidence for dynamic neural retraining in the peer-reviewed evidence is scant. A 2021 meta-analysis of mind-body intervention studies in ME/CFS could not source any peer-reviewed data on DNRS in ME/CFS despite authors explicitly including related terms in their search.<ref>{{Cite journal|title=Systematic Review of Mind-Body Interventions to Treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2021-06-24|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC8305555/|journal=Medicina|volume=57|issue=7|pages=652|last=Khanpour Ardestani|first=Samaneh|last2=Karkhaneh|first2=Mohammad|last3=Stein|first3=Eleanor|last4=Punja|first4=Salima|last5=Junqueira|first5=Daniela R.|last6=Kuzmyn|first6=Tatiana|last7=Pearson|first7=Michelle|last8=Smith|first8=Laurie|last9=Olson|first9=Karin|last10=Vohra|first10=Sunita|language=en|doi=10.3390/medicina57070652|issn=1648-9144}}</ref> There appear to be no trials of DNRS in ME/CFS in the published literature.
==Risks and safety ==
Since no clinical trials have been conducted on DNRS therapies in ME/CFS, it is challenging to state what risks it and similar treatment modalities present.<ref name="about" /><ref name="Guenter2019" />

It is generally acknowledged that patients who fail to improve through DNRS and similar programs discuss feelings of guilt, as these and similar systems frame recovery as within the patient's control, even in literature that views these interventions in a positive light.<ref>{{Cite journal|title=Towards a Better Understanding of the Complexities of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID|date=2023-03-07|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC10048882/|journal=International Journal of Molecular Sciences|volume=24|issue=6|pages=5124|last=Tate|first=Warren P.|last2=Walker|first2=Max O. M.|last3=Peppercorn|first3=Katie|last4=Blair|first4=Anna L. H.|last5=Edgar|first5=Christina D.|language=en|doi=10.3390/ijms24065124|issn=1422-0067}}</ref>

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

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

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

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

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

==References ==
{{Reflist}}

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

Dynamic Neural Retraining System

2025-08-25T14:07:18Z

JaimeS:/* ME/CFS */ So many edits. I think I'm going to have to semi-lock these pages, as they are frequently changed by both proponents and detractors in ways that do not meet MEpedia guidelines.

Annie Hopper created the '''Dynamic Neural Retraining System''' or '''DNRS''' in 2008, and states this is based on her recovery from "severe Multiple Chemical Sensitivity, Fibromyalgia and Electric Hypersensitivity Syndrome".<ref name="team">{{Cite web | url=https://retrainingthebrain.com/meet-the-dnrs-team/ | title = Meet the DNRS™ Team | last = Tozer | first = James|website=Dynamic Neural Retraining System|language=en-CA|access-date=2020-09-23}}</ref> Prior to becoming ill, healing and developing DNRS, Annie Hopper was a core beliefs counsellor and weekly newspaper columnist.

==Theory ==
[https://retrainingthebrain.com/ The DNRS website] positions limbic system impairment as the cause of brain changes, and that this causes a "maladaptive stress response" which then causes certain physical symptoms, which the website lists.<ref name="about">{{Cite web|url=https://retrainingthebrain.com/how-the-program-works/|title=How The Program Works|last=Tozer|first=James|authorlink=|date=|website=Dynamic Neural Retraining System|language=en-CA|archive-url=|archive-date=|url-status=|access-date=2020-09-23}}</ref> Limbic system impairment can have multiple causes; the common result is a type of neurological dysregulation in the brain. This can lead to central sensitization, a condition where the brain and nervous system become hypersensitive, amplifying pain, stress, and normal sensory input. DNRS assists in recovery through mood elevation, desensitization and visualization to facilitate "new, healthy neural pathways".<ref name="about" />

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

The program includes a one-year subscription which includes 12 hours of video tutorials followed by a consistent, regular daily practice. Program registrants commit to 6 months of practice of one hour per day.<ref name="about" />

==ME/CFS ==
The DNRS website claims it can "rewire chronic illness disease patterns in the brain" and that "the program is an effective treatment for [[Multiple chemical sensitivity|chemical sensitivities]], [[chronic fatigue syndrome]], [[fibromyalgia]] and many other chronic illnesses". This rewiring is considered to be reflected through changed symptoms rather than being reliant on objective evidence of changes in brain function or connectivity.<ref name="about" /> Peripheral or [[autonomic nervous system]] changes are not discussed.<ref name="about" />

Evidence for dynamic neural retraining in the peer-reviewed evidence is scant. A 2021 meta-analysis of mind-body intervention studies in ME/CFS could not source any peer-reviewed data on DNRS in ME/CFS despite authors explicitly including related terms in their search.<ref>{{Cite journal|title=Systematic Review of Mind-Body Interventions to Treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2021-06-24|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC8305555/|journal=Medicina|volume=57|issue=7|pages=652|last=Khanpour Ardestani|first=Samaneh|last2=Karkhaneh|first2=Mohammad|last3=Stein|first3=Eleanor|last4=Punja|first4=Salima|last5=Junqueira|first5=Daniela R.|last6=Kuzmyn|first6=Tatiana|last7=Pearson|first7=Michelle|last8=Smith|first8=Laurie|last9=Olson|first9=Karin|last10=Vohra|first10=Sunita|language=en|doi=10.3390/medicina57070652|issn=1648-9144}}</ref>
==Risks and safety ==
Since no clinical trials have been conducted on DNRS therapies in ME/CFS, it is challenging to state what risks it and similar treatment modalities present.<ref name="about" /><ref name="Guenter2019" />

It is generally acknowledged that patients who fail to improve through DNRS and similar programs discuss feelings of guilt, as these and similar systems frame recovery as within the patient's control, even in literature that views these interventions in a positive light.<ref>{{Cite journal|title=Towards a Better Understanding of the Complexities of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID|date=2023-03-07|url=https://pmc.ncbi.nlm.nih.gov/articles/PMC10048882/|journal=International Journal of Molecular Sciences|volume=24|issue=6|pages=5124|last=Tate|first=Warren P.|last2=Walker|first2=Max O. M.|last3=Peppercorn|first3=Katie|last4=Blair|first4=Anna L. H.|last5=Edgar|first5=Christina D.|language=en|doi=10.3390/ijms24065124|issn=1422-0067}}</ref>

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

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

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

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

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

==References ==
{{Reflist}}

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

Homeopathy

2025-08-06T22:03:14Z

JaimeS:Sorry, patient testimonials are not references

'''Homeopathy''' is a form of [[alternative medicine]]. A homeopath prescribes homeopathic remedies based on the disease symptoms that the patient is displaying. Homeopathy is being used for a broad range of diseases, including physical and mental illnesses and acute and chronic conditions. The theory of homeopathy is that homeopathic remedies stimulate the innate ability of a person to recover from a disease state to a healthy state.

Homeopathy is considered controversial by many and often debated.

Some medical providers use homeopathy as part of their clinical practice. The European Committee for Homeopathy "represents all medical doctors with an additional qualification in homeopathy, organized in 30 associations in 20 European countries."<ref>{{Cite web|url=https://homeopathyeurope.org/|title=The European Committee for Homeopathy|website=The European Committee for Homeopathy|language=en-US|access-date=2024-09-19}}</ref>

=== Dilution ===
Homeopathic remedies are made as a result from a repeated process dilution of a substance in water and shaking. This process is called potentization. The substance used as base for making the remedy may be a herb, a mineral or other substance. Each substance has a "drug picture", a image of symptoms that a homeopath uses for selecting which remedy should be prescribed for the patient. The fact that a homeopathic remedy may not contain any of the original substance that was diluted makes it challenging to account for a biological effect. However, a meta-analysis of homeopathic interventions showed that the effect of homeopathic interventions differs significantly from placebo.<ref>{{Cite journal|title=Efficacy of homoeopathic treatment: Systematic review of meta-analyses of randomised placebo-controlled homoeopathy trials for any indication|date=2023-10-07|url=https://pubmed.ncbi.nlm.nih.gov/37805577/|journal=Systematic Reviews|volume=12|issue=1|pages=191|last=Hamre|first=H. J.|last2=Glockmann|first2=A.|last3=von Ammon|first3=K.|last4=Riley|first4=D. S.|last5=Kiene|first5=H.|doi=10.1186/s13643-023-02313-2|pmc=10559431|pmid=37805577|issn=2046-4053}}</ref>

=== Homeopathy for ME ===
A scientific randomized control trial using homeopathy as treatment for CFS/ME reported "There is weak but equivocal evidence that the effects of homeopathic medicine are superior to placebo."<ref>{{Cite journal|title=A randomised, controlled, triple-blind trial of the efficacy of homeopathic treatment for chronic fatigue syndrome|date=2004-02|url=https://pubmed.ncbi.nlm.nih.gov/15016577/|journal=Journal of Psychosomatic Research|volume=56|issue=2|pages=189–197|last=Weatherley-Jones|first=Elaine|last2=Nicholl|first2=Jon P.|last3=Thomas|first3=Kate J.|last4=Parry|first4=Gareth J.|last5=McKendrick|first5=Michael W.|last6=Green|first6=Stephen T.|last7=Stanley|first7=Philip J.|last8=Lynch|first8=Sean P. J.|doi=10.1016/S0022-3999(03)00377-5|pmid=15016577|issn=0022-3999}}</ref>

== See also ==

* [[Chronic Fatigue Syndrome: A Guide to the Homeopathic Treatment of CFS/M.E.]] (book)

== References ==
<references />

Dauer

2025-07-24T17:32:49Z

JaimeS:/* See also */ Removed hibernation link, page no longer exists

'''Dauer''' is the German word for persistence or long-lived.<ref name=":0" /><ref>{{Cite web | url = https://dictionary.reverso.net/german-english/Dauer | title = Dauer translation English {{!}} German dictionary {{!}} Reverso | website = dictionary.reverso.net|access-date=2020-02-25}}</ref>

== Dauer larva ==
An alternative developmental stage known as '''dauer''' or '''dauer state''' has been found to in nematode worms, particularly ''Caenorhabditis elegans'', whereby the larva goes into a type of stasis as a result of harsh environmental conditions.<ref name=":1">{{Cite journal | last = Cassada | first = Randall C. | last2 = Russell | first2 = Richard L. | date = 1975-10-01 | title = The dauerlarva, a post-embryonic developmental variant of the nematode Caenorhabditis elegans |url =http://www.sciencedirect.com/science/article/pii/0012160675901098|journal=Developmental Biology|language=en|volume=46|issue=2 | pages = 326–342|doi=10.1016/0012-1606(75)90109-8|issn=0012-1606}}</ref> The dauer worms stop feeding, and significantly reduce their movement, and have been reported to reversibly alter some of their sensory neurons.<ref name=":1" /><ref>{{Cite journal | last = Klassen | first = Matthew P. | last2 = Yuan | first2 = Quan | date = 2013-08-19 | title = Dendrite Plasticity: Branching Out for Greener Pastures |url =http://www.sciencedirect.com/science/article/pii/S0960982213008592|journal=Current Biology|language=en|volume=23|issue=16| pages=R687–R688|doi=10.1016/j.cub.2013.07.036|issn=0960-9822}}</ref>

== Used in relation to Chronic Fatigue Syndrome ==
Dauer, or hibernation, was used to explain [[Chronic Fatigue Syndrome]] in the paper [[Metabolic features of chronic fatigue syndrome|Metabolic features of chronic fatigue syndrome]]; CFS was described as a "hypometabolic response to environmental stress similar to dauer".<ref name=":0">{{Cite journal | last = Naviaux | first = Robert K. | authorlink = Robert Phair | last2 = Naviaux | first2 = Jane C. | authorlink2 = Jane Naviaux | last3 = Li | first3 = Kefeng | author-link3 = Kefeng Li | last4 = Bright | first4 = A. Taylor | author-link4 = | last5 = Alaynick | first5 = William A. | author-link5 = William Alaynick | last6 = Wang | first6 = Lin | author-link6 = Lin Wang | last7 = Baxter | first7 = Asha | author-link7 = | last8 = Nathan | first8 = Neil | author-link8 = | last9 = Anderson | first9 = Wayne | author-link9 = | date = 2016-08-29 | title = Metabolic features of chronic fatigue syndrome | url =http://www.pnas.org/content/early/2016/08/24/1607571113.full|journal=Proceedings of the National Academy of Sciences|language=en|volume=113|issue=37| pages = E5472–E5480|doi=10.1073/pnas.1607571113|issn=0027-8424|pmc = 5027464|pmid=27573827|access-date=Feb 25, 2020|quote=|via=}}</ref>

=== Letter: Reply to Vogt et at.===
A letter by Vogt et at. (2016) challenged the conclusions drawn, stating that psychosocial or psychological causes could not be ruled and challenging the validity of the diagnosis of [[chronic fatigue syndrome]].<ref name="VogtLetter2016">{{Cite journal | last = Vogt | first = Henrik | last2 = Ulvestad | first2 = Elling | last3 = Wyller | first3 = Vegard Bruun | date = 2016-11-15 | title = Metabolic features of chronic fatigue syndrome revisited | url =https://www.pnas.org/content/113/46/E7140|journal=Proceedings of the National Academy of Sciences|language=en|volume=113|issue=46| pages = E7140–E7141|doi=10.1073/pnas.1615143113|issn=0027-8424|pmid=27810961}}</ref> Naviaux et al. replied that "... chemical details of the metabolic findings in ME/CFS led directly to a survey of other hypometabolic syndromes like dauer, diapause, torpor, hibernation, and caloric restriction. It was the detailed nature and specific pattern of abnormalities affecting six pathways (sphingolipids, phospholipids, purines, cholesterol, polyamines, and redox metabolism), and not the over 50 other biochemical pathways interrogated, that focused our attention on dauer. In dauer, there is a reprioritization of sensory processing that is metabolically controlled (9). This situation bears similarities to ME/CFS."<ref name="ReplyToVogt15112016">{{Cite journal | last = Naviaux | first = Robert K. | last2 = Naviaux | first2 = Jane C. | last3 = Li | first3 = Kefeng | last4 = Bright | first4 = A. Taylor | last5 = Alaynick | first5 = William A. | last6 = Wang | first6 = Lin | last7 = Baxter | first7 = Asha | last8 = Nathan | first8 = Neil | last9 = Anderson | first9 = Wayne | date = 2016-11-03 | title = Reply to Vogt et al.: Metabolomics and chronic fatigue syndrome | url =https://www.pnas.org/content/113/46/E7142|journal=Proceedings of the National Academy of Sciences|language=en|volume=113|issue=46| pages = E7142–E7143|doi=10.1073/pnas.1616261113|issn=0027-8424}}</ref>

== Letter: Reply to Roerink et al. ==
A letter from Roerink et al. raised questions and concerns about the lack of controls for exercise, diet and drug use, which they stated may have affected the results.<ref>{{Cite journal | last = Roerink|first = Megan E. | authorlink = | last2 = Bronkhorst | first2 = Ewald M. | authorlink2 = | last3 = Meer | first3 = Jos W.M. | author-link3 = Jos van der Meer | last4 = van deer Meer | first4 = | author-link4 = | date = 2017-02-07 | title = Metabolome of chronic fatigue syndrome | url =https://www.pnas.org/content/114/6/E910|journal=Proceedings of the National Academy of Sciences|language=en|volume=114|issue=6| pages = E910–E910|doi=10.1073/pnas.1618447114|issn=0027-8424|pmc=|pmid=28126718|access-date=|quote=|via=}}</ref> Naviaux and Gordon replied that the initial phase was done only with ambulatory CFS patients (i.e., able to walk/mobile), and clarified and corrected points raised about statistical methods used.<ref>{{Cite journal | last = Naviaux | first = Robert K. | authorlink = Robert Naviaux | last2 = Gordon | first2 = Eric | authorlink2 = Eric Gordon | date = 2017-01-26 | title = Reply to Roerink et al.: Metabolomics of chronic fatigue syndrome | url =https://www.pnas.org/content/114/6/E911|journal=Proceedings of the National Academy of Sciences|language=en|volume=114|issue=6| pages = E911–E912|doi=10.1073/pnas.1618984114|issn=0027-8424|pmc=|pmid=|access-date=|quote=|via=}}</ref>

== Open Medicine Foundation ==
[[Category:Medical hypotheses]]
After the publication of the article, Dr [[Ronald Davis|Ron Davis]] invited [[Robert Naviaux]] to join the OMF Scientific Advisory Board.<ref>{{Cite journal | last = National Academy of Sciences | first = | authorlink = | date = 2017-05-02 | title = Correction for Naviaux et al., Metabolic features of chronic fatigue syndrome | url =https://www.pnas.org/content/114/18/E3749|journal=Proceedings of the National Academy of Sciences|language=en|volume=114|issue=18| pages = E3749–E3749|doi=10.1073/pnas.1703858114|issn=0027-8424|pmc=|pmid=28439011|access-date=|quote=|via=}}</ref>

==See also==
*[[Robert Naviaux]]
*[[Severe and very severe ME]]
*[[Metabolism]]
*[[Paralysis]]

== References ==
{{reflist}}

Talk:Colin Tait

2025-07-24T17:30:44Z

JaimeS:/* Needs major revisions */ new section

== Needs major revisions -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 17:30, July 24, 2025 (UTC) ==

To make claims such as this page you'd need to cite scholarly sources that support the information here.

User talk:DarthNZ

2025-07-24T17:26:28Z

JaimeS:This was my explanation to DarthNZ regarding the creation of multiple new articles without using our guidelines over about 48 hours.

{{Template:Welcome|realName=DarthNZ|name=DarthNZ}}

-- [[User:New user message|New user message]] ([[User talk:New user message|talk]]) 15:15, July 11, 2025 (UTC)

__________________________

--Hey, DarthNZ! Please do take a look at the editing guidelines for MEpedia. Many of the pages you have added within the past 48 hours do not meet our guidelines.

1) Including names of clinicians with just contact information is not the layout for our information re: well-known persons in ME/CFS. Please refer to the article layouts as described in the MEpedia guidelines linked at the end of this message.

2) Creating a page for "human hibernation" is duplicative, as there is a page for Dauer.

You can find more information about how to use MEpedia and how it is organized here: https://me-pedia.org/wiki/Category:MEpedia_guidelines

Graded exercise therapy

2025-07-24T17:13:01Z

JaimeS:Removed strength training page link that no longer exists

[[File:Increasingvalueschart-gradedexercise.png|thumb|200x200px]]
'''Graded exercise therapy''' (GET) is a form of physical therapy for the treatment of [[chronic fatigue syndrome]] (CFS) where physical activity is gradually increased over time, regardless of how the patient is feeling and ignoring any increased symptoms or new symptoms. GET was offered as a primary treatment for [[ME/CFS]] to [[UK]] patients by the [[National Health Service]] (NHS), as specified in the [[NICE guidelines]] from 2007-2021, but the GET recommendation was removed by the 2021 [[NICE guidelines]] update because of high rates of harm.<ref name="ng206">{{Cite web | url=https://www.nice.org.uk/guidance/ng206 | title = Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline. | last = NICE Guideline Development Group | first = | authorlink = | publisher = [[National Institute for Health and Care Excellence]] | date = 2021-10-29}}</ref> The use of Graded Exercise Therapy as a treatment is based on the disputed [[deconditioning]] hypothesis, and the highly controversial [[biopsychosocial model]] (BPS) of ME/CFS.<ref name=":0" />

Alternative names used for graded exercise therapy include [[graded activity management|'''Graded Activity Management''']] (GAM), and '''Graded Activity Therapy''' (GAT).<ref name="SharpeCampling">{{Cite book | title = Chronic Fatigue Syndrome | pages = 157|isbn=978-0-19-157971-4|edition=|volume=|language=en|title-link=| url = https://books.google.co.uk/books?id=DTefP_zDgyQC&pg=PT157&lpg=PT157&dq=%22graded+activity+therapy%22|access-date= | date = 2008-07-02| publisher = OUP Oxford | last = Campling | first = Frankie | authorlink = | last2 = Sharpe | first2 = Michael | authorlink2 = Michael Sharpe|veditors=|others=|doi=|oclc=|quote=GET is similar in many ways to CBT, but it concentrates more on changing coping behaviour rather than thinking. It might be better called graded activity therapy.|archive-url=|archive-date=|location=|editor-last = }}</ref><ref name="southtees2018">{{Cite web | url=https://www.southtees.nhs.uk/content/uploads/Session-1-full-updated-summer-2018-1.pdf | date = 2018 | website = South Tees Hospitals NHS Foundation | title = Group Rehabilitation Programme for people with CFS / ME. SESSION 1 | last = South Tees Specialist CFS/ME Service|at=Slide 17|access-date=2021-11-03|quote=GRADED EXERCISE THERAPY = GRADED ACTIVITY THERAPY}}</ref><ref name="elft">{{Cite web | url=https://www.elft.nhs.uk/service/419/Bedfordshire-Chronic-Fatigue-Service | title = ELFT - Services - Bedfordshire Chronic Fatigue Service | last = | first = | authorlink = | date = 2021-10-30 | website = East London NHS|archive-url=|archive-date=|url-status=|access-date=2021-11-03|quote=NICE recommended Cognitive Behaviour Therapy (CBT) and Graded Activity Management (GAM)}}</ref>

Graded Activity Therapy is defined in several different ways:
* As identical to graded exercise therapy,<ref name="SharpeCampling" /><ref name="southtees2018" /> or
* As the same approach but including [[cognitive dysfunction|cognitive / mental activity]] as well as physical activity<ref name="Cheshire2020">{{Cite journal | last = Cheshire | first = Anna | last2 = Ridge | first2 = Damien | last3 = Clark | first3 = Lucy | last4 = White | first4 = Peter | date = 2020-01-30 | title = Guided graded Exercise Self-help for chronic fatigue syndrome: patient experiences and perceptions| url = https://doi.org/10.1080/09638288.2018.1499822|journal=Disability and Rehabilitation|volume=42|issue=3 | pages = 368–377|doi=10.1080/09638288.2018.1499822|issn=0963-8288|pmid=30325677}}</ref><ref name="srft">{{Cite web | url=https://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=56453&type=full&servicetype=Inline | date = 2018 | title = Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalopathy (ME) Management Programme|website=Salford Royal NHS Foundation Trust | last = |access-date=2021-11-03|quote=Scheduling Rest and Activity<br />The aim of cognitive-behaviour and graded activity therapy is not simply to be more active, but to make activity and rest consistent, rather than symptom dependent. By doing this you will be able to gradually increase your ability to carry out everyday activities while slowly cutting down on excessive rest.}}</ref>

== Evidence ==

=== Patient reports of harm ===
Clinical trials have resulted in mixed results.<ref name=":0" /><ref name=":1" /><ref name=":5" /> Surveys of patients conducted by patient charities have universally found Graded Exercise Therapy to be harmful, although a minority of patients found it helped them or simply ineffective.<ref name=":2" /><ref name=":3" /> A number of severely ill patients have reported that starting Graded Exercise Therapy with moderate symptoms cause a severe escalation of symptoms, leaving them permanently worse. Two highly influential peer-reviewed articles often used to support the use of Graded Exercise Therapy, the [[Cochrane]] review and the [[PACE trial]], have had widescale calls for retraction based on criticism of the scientific method and standards used.<ref name=":5" />

[[Robin Brown]], a British doctor with ME/CFS has created petition that many thousands have signed calling for GET and related [[Cognitive behavioral therapy|CBT]] to be removed from the UK treatment guidelines immediately.<ref>{{Cite web | url=https://www.change.org/p/nice-stop-harming-me-cfs-patients-take-cbt-get-out-of-me-cfs-guidelines-now | title = NICE stop harming ME/CFS patients - Take CBT and GET out of the CFS guidelines NOW! {{!}} Sign the Petition | last = Brown | first = Robin | authorlink = Robin Brown | date = |website=Change.org|language=en-GB|archive-url=|archive-date=|access-date=2018-11-13}}</ref>

=== Physical fitness unchanged ===
A number of studies by proponents of GET have found that it did not improve fitness, when self-rated perception of fatigue did improve after GET, no improvements in exercise capacity were statistically significant.<ref name=":0" /><ref>{{Cite journal | last = Moss-Morris | first = Rona | authorlink = Rona Moss-Morris | last2 = Sharon | first2 = Cynthia | authorlink2 = Cynthia Sharon | last3 = Tobin | first3 = Roseanne | authorlink3 = Roseanne Tobin | last4 = Baldi | first4 = James C. | authorlink4 = James Baldi | authorlink5 = | date = Mar 2005 | title = A Randomized Controlled Graded Exercise Trial for Chronic Fatigue Syndrome: Outcomes and Mechanisms of Change| url = https://journals.sagepub.com/doi/abs/10.1177/1359105305049774|journal=Journal of Health Psychology|language=en|volume=10|issue=2 | pages = 245–259|doi=10.1177/1359105305049774|issn=1359-1053|quote=|via=}}</ref><ref name=":4" /> The controversial PACE trial's 6 minute walk test results showed those successfully completing GET were unable to walk as far as older patients awaiting a lung transplant or those with heart failure; data that was omitted from the original trial report.<ref name=":4" />

==Patient analysis of PACE results==
[[Graham McPhee]] and others created videos investigating the PACE trial data in relation to GET.<ref>{{Cite web | url=https://vimeo.com/21850334 | title = PACEindividuals|website=Vimeo|language=en|access-date=2018-10-13}}</ref><ref>{{Cite web | url=https://vimeo.com/21852891 | title = PACEgraph|website=Vimeo|language=en|access-date=2018-10-13}}</ref> Several re-analyses of the PACE trial results have been published since the detailed PACE trial data was released into the public domain.<ref name=":4" />

==Fear of exercise==
The [[PACE Trial Management Group|PACE trial investigators]] have stated that they believe a significant maintaining factor in the persistence of ME/CFS is fear of [[exercise]].<ref>{{Cite journal | last = Torjesen | first = Ingrid | date = 2015-10-28 | title = Tackling fear about exercise produces long term benefit in chronic fatigue syndrome| url = https://www.bmj.com/content/351/bmj.h5771|journal=BMJ|language=en|volume=351 | pages = h5771|doi=10.1136/bmj.h5771|issn=1756-1833|pmid=26511755}}</ref> This claim has been criticized as unsupported by trial results.<ref>{{Cite journal | date = 2018-10-13 | title = Objective measures found a lack of improvement for CBT & GET in the PACE Trial: subjective improvements may simply represent response biases or placebo effects in this non-blinded trial| url = https://www.bmj.com/content/350/bmj.h227/rr-10|journal=The BMJ|language=en}}</ref> A study by [[Jo Nijs|Nijs]] et al. in 2004 concluded:

{{Quote box|quote=These results indicate a lack of correlation between kinesiophobia and exercise capacity, activity limitations, or participation restrictions, at least in patients with [[chronic fatigue syndrome |CFS]] who are experiencing widespread [[myalgia |muscle]] or [[arthralgia |joint pain]]. | title = Chronic Fatigue Syndrome: Lack of Association between Pain-Related Fear of Movement and Exercise Capacity and Disability|source=Jo Nij, Katrien Vanherberghen, William Duquet & Kenny De Meirleir (2004)}}

==Doctors who are patients with ME/CFS==
[[File:GET-CBT-ME-chronicfatiguesyndrome.jpeg|alt=Graded exercise therapy and CBT. "As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by GET, I am in a unique position to answer how harmful GET and cognitive behavioral therapy (CBT) really are. The basis of these therapies is false illness beliefs, meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise (2)." - Maik Speedy (2015). Annals of Internal Medicine.|upright=1|thumb|right|Graded exercise therapy caused a permanent relapse that left Dr [[Maik Speedy]] bedridden.]]<br />
A number of doctors diagnosed with ME/CFS have shared their personal experiences of [[graded exercise therapy]] or have spoken out against GET to both other doctors and patients. These include:
* [[Robin Brown]], author of [[M.E. and Me: A Doctor's Struggle with Chronic Fatigue Syndrome]]
* [[Nina Muirhead]], a British surgeon
* [[Maik Speedy]], who became [[Severe and very severe ME|severely ill]] as a result of GET and has not improved since
* [[Mark Vink]], a former marathon runner, GP, and Dutch national hockey captain with [[severe and very severe ME#verysevere|very severe ME]], who published a study demonstrating his body responded to walking down the hall to the toilet in a similar way to elite athletes in competition<br style="clear:both">

==NICE's 2019 patient survey ==
An independent patient survey of UK patients was comissioned by [[NICE]] in 2019, as part of the [[NHS]] guideline review process.<ref name="OxBrookesSummary">{{Cite web | url= https://meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Executive-Summary-from-Forward-ME-03.04.19.pdf | type=pdf | date = 2019-04-03 | title = Forward-ME Executive Summary|website=ME Association | last = Forward-ME | authorlink = Forward-ME}}</ref>

{| class="wikitable"
! colspan="4" class="center" | Effects of GET on ME/CFS
|-
!
! improved
! no change
! worsened
|-
| physical health
| 13%
| 12%
| 67%
|-
| mental health
| 13%
| 26%
| 53%
|}

{| class="wikitable"
|-
! colspan="3" class="center" |ME/CFS symptoms after GET
|-
!
!yes
!no
|-
| one of more symptoms worsened because of GET
|81%
|13%
|-
| new symptom(s) developed because of GET
| 37%
|
|}

{| class="wikitable"
|-
! colspan="3" class="center" |Patient had severe ME/CFS
|-
| before treatment
|13%
|-
| after treatment
| 35%
|-
|}

== Articles explaining GET not appropriate for ME/CFS ==
* 2005, [http://stonebird.co.uk/GET.pdf Issues relating to Severe ME And Graded Exercise]<ref>{{Cite web | url=http://stonebird.co.uk/GET.pdf | title=Issues relating to Severe ME And Graded Exercise | last = Crowhurst | first = Greg | authorlink=Greg Crowhurst | date = Sep 3, 2005 | website = Stonebird|archive-url=|archive-date=|access-date=}}</ref>
* 2016, [https://undark.org/article/chronic-fatigue-graded-exercise-pace/ Worse Than the Disease: A popular therapy for chronic fatigue syndrome made many patients worse. Adding insult to injury, research supporting it is now unraveling.]<ref name=":6" />
* 2017, [https://www.buzzfeed.com/camillamaxted/this-is-why-i-quit-exercise-therapy This is why I quit Exercise Therapy]<ref>{{Cite news | url=https://www.buzzfeed.com/camillamaxted/this-is-why-i-quit-exercise-therapy | title = This Is Why I Quit Exercise Therapy | last = Maxted | first = Camilla | date = Aug 6, 2017|work=BuzzFeed|access-date=2018-11-29|archive-url=|archive-date=|language=en|quote=}}</ref>
* 2017, [http://journals.sagepub.com/doi/full/10.1177/1359105317697323 Do graded activity therapies cause harm in chronic fatigue syndrome?]<ref>{{Cite journal | last = Kindlon | first = Tom | date = 2017-03-20 | title = Do graded activity therapies cause harm in chronic fatigue syndrome?| url = http://journals.sagepub.com/doi/full/10.1177/1359105317697323|journal=Journal of Health Psychology|language=en|volume=22|issue=9 | pages = 1146–1154|doi=10.1177/1359105317697323|issn=1359-1053}}</ref>
*2018, [https://repository.uel.ac.uk/download/b9ef0ae9a8494102fe0bfface6eb12d5651bc78be4eda0401b72d1896cb16858/137216/2012_Goudsmit_etal_Pacing.doc Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document]<ref name="Goudsmit2018Pacing">{{Cite journal | last = Goudsmit | first = Ellen M. | authorlink = Ellen Goudsmit | last2 = Nijs | first2 = Jo | authorlink2 = Jo Nijs | last3 = Jason | first3 = Leonard A. | authorlink3 = Leonard Jason | last4 = Wallman | first4 = Karen E. | authorlink4 = | date = 2011-12-19 | title = Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document| url = https://dx.org/10.3109/09638288.2011.635746|journal=Disability and Rehabilitation|volume=34|issue=13 | pages = 1140–1147|doi=10.3109/09638288.2011.635746|issn=0963-8288|pmc=|pmid=|access-date=|quote=|via=}}</ref>
::''Describing graded exercise in comparison with symptom-contingent graded exercise therapy or pacing''
* 2019, [https://blogs.bmj.com/medical-humanities/2019/07/04/why-graded-exercise-therapy-and-cognitive-behaviour-therapy-are-controversial-in-chronic-fatigue-syndrome/ Why Graded Exercise Therapy and Cognitive Behaviour Therapy are Controversial in Chronic Fatigue Syndrome]<ref name="Tack2019">{{Cite web | url=https://blogs.bmj.com/medical-humanities/2019/07/04/why-graded-exercise-therapy-and-cognitive-behaviour-therapy-are-controversial-in-chronic-fatigue-syndrome/ | title = Why Graded Exercise Therapy and Cognitive Behaviour Therapy are Controversial in Chronic Fatigue Syndrome | last = Michiel | first = Tack | authorlink = Michiel Tack | date = Jul 4, 2019 | website = BMJ Medical Humanities Blog|language=en-US|archive-url=|archive-date=|access-date=2019-07-09}}</ref>

==Criticism==
*2008, [https://meassociation.org.uk/2008/05/mea-position-on-graded-exercise-therapy-get/ ME Association position on graded exercise therapy (GET)]<ref name="MEA2007">{{Cite web | url=https://meassociation.org.uk/2008/05/mea-position-on-graded-exercise-therapy-get/ | title = ME Association position on graded exercise therapy (GET) | last = The ME Association | first = | authorlink = ME Association | date = 2008-05-11 | website = ME Association|language=en-GB|archive-url=|archive-date=|access-date=2020-09-19}}</ref> - [[ME Association]]
*2010, At the [[Invest in ME International ME Conference]] Doctor [[Paul Cheney]] said "The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane".<ref>{{Cite news | url=https://paradigmchange.me/me/exercise-quotes/ | title = Quotes About Exercise Intolerance from M.E. Experts|work=Myalgic Encephalomyelitis|access-date=2018-10-13|language=en-US}}</ref>
*2011, [http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]<ref name=":2">{{Cite web | url=http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx | title = Bulletin of the IACFS/ME 59 Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | last = Kindlon | first = Tom | authorlink = Tom Kindlon | date = |website=IACFSME|archive-url=|archive-date=|access-date=}}</ref>
*2011, Health-related quality of life in patients with chronic fatigue syndrome: group [[Cognitive behavioral therapy|cognitive behavioural therapy]] and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up<ref>{{Cite journal | last = Núñez | first = Montserrat | authorlink = Montserrat Núñez | last2 = Fernández-Solà | first2 = Joaquim | authorlink2 = | last3 = Nuñez | first3 = Esther | authorlink3 = | last4 = Fernández-Huerta | first4 = José-Manuel | authorlink4 = | last5 = Godás-Sieso | first5 = Teresa | authorlink5 = | last6 = Gomez-Gil | first6 = Esther | authorlink6 = | date = Mar 2011 | title = Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up | url =http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.467.4965&rep=rep1&type=pdf|journal=Clinical Rheumatology|volume=30|issue=3 | pages = 381–389|doi=10.1007/s10067-010-1677-y|issn=1434-9949|pmid=21234629|quote=|via=}}</ref> [http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.467.4965&rep=rep1&type=pdf (Full Text)]
*2015, [http://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf ME/CFS Illness Management Survey Results “No decisions about me without me”]<ref name=":3">{{Cite web | url=http://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf | title=ME/CFS Illness Management Survey Results - “No decisions about me without me” Part 1 | last = | first = | date = May 2015 | website = meassociation.org|archive-url=|archive-date=|access-date=}}</ref>
*2016, Do graded activity therapies cause harm in chronic fatigue syndrome?<ref>{{Cite journal | last = Kindlon | first = Tom | date = 2017-03-20 | title = Do graded activity therapies cause harm in chronic fatigue syndrome?| url = http://journals.sagepub.com/doi/full/10.1177/1359105317697323|journal=Journal of Health Psychology|language=en|volume=22|issue=9 | pages = 1146–1154|doi=10.1177/1359105317697323|issn=1359-1053|quote= | author-link = Tom Kindlon|via=}}</ref> [https://journals.sagepub.com/doi/full/10.1177/1359105317697323 (Full Text)] - Tom Kindlon
*2016, Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial<ref name=":4">{{Cite journal | last = Wilshire | first = Carolyn | last2 = Kindlon | first2 = Tom | last3 = Matthees | first3 = Alem | last4 = McGrath | first4 = Simon | date = 2016-12-14 | title = Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial| url = http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=5|issue=1 | pages = 43–56|doi=10.1080/21641846.2017.1259724|issn=2164-1846}}</ref> [http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724 (Full Text)]
*2016, [https://undark.org/article/chronic-fatigue-graded-exercise-pace/ Worse Than the Disease: A popular therapy for chronic fatigue syndrome made many patients worse. Adding insult to injury, research supporting it is now unraveling.]<ref name=":6">{{Cite news | url=https://undark.org/article/chronic-fatigue-graded-exercise-pace/ | title = For Chronic Fatigue Syndrome Sufferers, a Dubious Treatment Unravels | last = Tuller | first = David | date = 2016-10-27|work=Undark|access-date=2018-11-27|archive-url=|archive-date=|language=en-US | authorlink = David Tuller}}</ref>
*2017, Bias, misleading information and lack of respect for alternative views have distorted perceptions of [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]] and its treatment<ref>{{Cite journal | last1 = Goudsmit | first1 = Ellen M | authorlink1=Ellen Goudsmit | last2 = Howes | first2 = Sandra | authorlink2 = Sandra Howes | title =Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment|journal=J Health Psychol|volume=22|issue=9 | page = 1159-1167 | date = 2017|pmid=|doi=10.1177/1359105317707216}}</ref> [http://journals.sagepub.com/doi/full/10.1177/1359105317707216 (Full Text)]
*2017, [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html Getting it wrong on chronic fatigue syndrome]<ref>{{Cite news | url=https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html | title = Opinion {{!}} Getting It Wrong on Chronic Fatigue Syndrome | last = Rehmeyer | first = Julie | date = 2018-03-18|work=New York Times|access-date=2018-11-27|archive-url=|archive-date=| publisher = New York Times | last2 = Tuller | first2 = David|publication-date=Jul 2018|language=en | authorlink = Julie Rehmeyer | authorlink2 = David Tuller}}</ref>
*2018, Rethinking the treatment of Chronic Fatigue Syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT<ref>{{Cite journal | last = Wilshire | first = Carolyn E. | authorlink = Carolyn Wilshire | last2 = Kindlon | first2 = Tom | authorlink2 = Tom Kindlon | last3 = Courtney | first3 = Robert | authorlink3 = Robert Courtney | last4 = Matthees | first4 = Alem | authorlink4 = Alem Matthees | last5 = Tuller | first5 = David | authorlink5 = David Tuller | last6 = Geraghty | first6 = Keith | authorlink6 = Keith Geraghty | last7 = Levin | first7 = Bruce | authorlink7 = Bruce Levin | date = 2018-03-22 | title = Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT| url = https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3|journal=BMC Psychology|language=en|volume=6|issue=1 | pages = |doi=10.1186/s40359-018-0218-3|issn=2050-7283|pmc=5863477|pmid=29562932|quote=|via=}}</ref> [https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3 (Full Text)]
*2018, Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review<ref name=":5">{{Cite journal | last = Vink | first = Mark | authorlink = Mark Vink | last2 = Vink-Niese | first2 = Alexandra | authorlink2 = Alexandra Vink-Niese | date = 2018-10-08 | title = Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review | url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6176540/|journal=Health Psychology Open|volume=5|issue=2 | pages = |doi=10.1177/2055102918805187|issn=2055-1029|pmc=|pmid=30305916|quote=|via=}}</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6176540/ (Full Text)]
*2018, [https://healthycontrolblog.wordpress.com/2018/11/29/my-complaint-to-the-cochrane-governing-board-about-the-cochrane-review-of-exercise-for-chronic-fatigue-syndrome/ My complaint to the Cochrane Governing Board about the Cochrane review of Exercise for chronic fatigue syndrome]<ref>{{Cite news | url=https://healthycontrolblog.wordpress.com/2018/11/29/my-complaint-to-the-cochrane-governing-board-about-the-cochrane-review-of-exercise-for-chronic-fatigue-syndrome/ | title = My complaint to the Cochrane Governing Board about the Cochrane review of Exercise for chronic fatigue syndrome | last = Struthers | first = Caroline | date = 2018-11-29|work=Healthy Control|access-date=2018-11-29|archive-url=|archive-date=|language=en-US|quote= | author-link = Caroline Struthers}}</ref> - Caroline Struthers
*2019, [https://www.meassociation.org.uk/2019/04/forward-me-and-oxford-brookes-university-announce-results-of-patient-survey-on-cbt-and-get-in-me-cfs-03-april-2019/ Forward-ME and Oxford Brookes University announce the results of patient survey on CBT and GET in ME/CFS]<ref name="OxBrookesMEA">{{Cite web | url=https://www.meassociation.org.uk/2019/04/forward-me-and-oxford-brookes-university-announce-results-of-patient-survey-on-cbt-and-get-in-me-cfs-03-april-2019 | date = 2019-04-03 | title = Forward-ME and Oxford Brookes University announce the results of patient survey on CBT and GET in ME/CFS|website=ME Association | last = Forward-ME | authorlink = Forward-ME | last2 = Oxford Brookes University|access-date= | first = | first2 = | authorlink2 = |archive-url=|archive-date=}}</ref>- Survey commissioned by NICE to help inform the review of the UK's ME/CFS treatment guidelines
::Survey results showed the effects of GET were:
::*Physical health deteriorated in 67% of ME/CFS patients as a result of GET
::*Physical health improved in 13% of ME/CFS patients as a result of GET
::*One or more symptoms worsened in 81% because of GET, particularly [[pain]] and [[fatigue]]
::*One or more new symptoms developed in 37% because of GET
::*No symptoms worsened for 13% because of GET
::*Mental health deteriorated in 53% of ME/CFS patients as a result of GET
::*Mental health improved in 13% of ME/CFS patients as a result of GET
*2020, [https://meassociation.org.uk/wp-content/uploads/ForwardME-Letter-re-Covid-19-Management-and-Exercise-Caution-27.08.20.pdf Letter re Covid-19 Management and Exercise Caution]<ref name="GETcovidForwardME">{{Cite web | url=https://meassociation.org.uk/wp-content/uploads/ForwardME-Letter-re-Covid-19-Management-and-Exercise-Caution-27.08.20.pdf | date = 2020-08-27 | last = Forward-ME | authorlink = Forward-ME| title = Letter re Covid-19 Management and Exercise Caution}}</ref> - [[Forward-ME]]

==CDC withdrawal of GET treatment ==

July 3, 2017, The [[Centers for Disease Control and Prevention]]'s (CDC) website Chronic Fatigue Syndrome page has been changed to "[[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (ME/CFS)" and GET and CBT recommendations have been removed.<ref>[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref>[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref>

==StopGET petitions==

A number of different patients and patient charities have created <nowiki>#stopGET</nowiki> petitions to campaign for an end to graded exercise therapy treatment in [[ME/CFS]]:
* Stop GET trials - MEAction<ref>{{Cite news | url=https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs | title = STOP GRADED EXERCISE THERAPY TRIALS FOR ME/CFS|work=#MEAction|access-date=2018-10-20|language=en}}</ref>
* Stop harming ME/CFS patients - take CBT/GET out of NICE guidelines NOW. - [[Robin Brown|Dr. Hng's]] [[United Kingdom|UK]] petition to stop GET and CBT
* The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision - a petition the ME Association delivered to Andrew Dillon at NICE
* Suspend all trials of graded exercise therapy in children and adults with ME/CFS - [[UK]] parliament petition (archived)<ref>{{Cite news | url=https://petition.parliament.uk/petitions/166601 | title = Archived Petition: Suspend all trials of graded exercise therapy in children and adults with ME/CFS|work=Petitions - UK Government and Parliament|access-date=2018-10-20|language=en-GB}}</ref>

== GET after COVID-19 ==
Concerns have been raised about the potential harms of graded exercise therapy to patients who have developed fatigue or other symptoms after COVID-19, patients needing rehabilitation after COVID-19, and patients who may develop postviral ME/CFS after COVID-19.<ref name="GETcovidForwardME" />

{{See also|Post-COVID-19 illness||Long COVID|}}

==Notable studies==
*2004, Chronic Fatigue Syndrome: Lack of Association between Pain-Related Fear of Movement and Exercise Capacity and Disability <ref>{{Cite journal | last = Nijs | first = Jo | author-link =Jo Nijs | last2 = Vanherberghen | first2 = Katrien | authorlink2 = Katrien Vanherberghen | last3 = Duquet | first3 = William | authorlink3 = William Duquet | last4 = De Meirleir | first4 = Kenny | authorlink4 = Kenny De Meirleir | date = 2004-08-01 | title = Chronic Fatigue Syndrome: Lack of Association Between Pain-Related Fear of Movement and Exercise Capacity and Disability| url = https://doi.org/10.1093/ptj/84.8.696|journal=Physical Therapy|language=en|volume=84|issue=8 | pages = |doi=10.1093/ptj/84.8.696|issn=1538-6724|quote=These results indicate a lack of correlation between kinesiophobia and exercise capacity, activity limitations, or participation restrictions, at least in patients with CFS who are experiencing widespread muscle or joint pain.|via=}}</ref> [https://academic.oup.com/ptj/article/84/8/696/2857531 (Full Text)]
*2009, 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<ref name=":0">{{Cite journal | last = Twisk | first = Frank N.M. | last2 = Maes | first2 = Michael | date = 2009 | 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| url = https://www.ncbi.nlm.nih.gov/m/pubmed/19855350/|journal=Neuro Endocrinology Letters|volume=30|issue=3 | pages = 284–299|issn=0172-780X|pmid=19855350}}</ref> [https://www.ncbi.nlm.nih.gov/m/pubmed/19855350/ (Abstract)]
*2016, Exercise therapy for chronic fatigue syndrome<ref name=":1">{{Cite journal | last = Larun | first = Lillebeth | last2 = Brurberg | first2 = Kjetil G. | last3 = Odgaard‐Jensen | first3 = Jan | last4 = Price | first4 = Jonathan R. | date = 2016 | title=Exercise therapy for chronic fatigue syndrome| url = https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub5/abstract|journal=Cochrane Database of Systematic Reviews|language=en|issue=6|doi=10.1002/14651858.CD003200.pub5|issn=1465-1858}}</ref> [https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub5/abstract (Full Text)]
*2016, Neurocognitive improvements after best-practice intervention for chronic fatigue syndrome: Preliminary evidence of divergence between objective indices and subjective perceptions.<ref>{{Cite journal | last = Cvejic | first = Erin | last2 = Lloyd | first2 = Andrew R. | last3 = Vollmer-Conna | first3 = Uté | date = 2016 | title=Neurocognitive improvements after best-practice intervention for chronic fatigue syndrome: Preliminary evidence of divergence between objective indices and subjective perceptions| url = https://www.ncbi.nlm.nih.gov/pubmed/26995250|journal=Comprehensive Psychiatry|volume=66 | pages = 166–175|doi=10.1016/j.comppsych.2016.02.002|issn=1532-8384|pmid=26995250|via=}}</ref> [[pubmed:26995250|(Abstract)]]
*2017, PACE investigators' response is misleading regarding patient survey results<ref>{{Cite journal | last = Kirke | first = Karen D | authorlink = | date = 2017-05-11 | title = PACE investigators’ response is misleading regarding patient survey results| url = https://doi.org/10.1177/1359105317703787|journal=Journal of Health Psychology|language=en|volume=22|issue=9 | pages = 1168–1176|doi=10.1177/1359105317703787|issn=1359-1053|quote=|via=}}</ref> [https://doi.org/10.1177%2F1359105317703787 (Full Text)]
*2018, Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT <ref>{{Cite journal | last = Wilshire | first = Carolyn E. | authorlink = Carolyn Wilshire | last2 = Kindlon | first2 = Tom | authorlink2 = Tom Kindlon | last3 = Courtney | first3 = Robert | authorlink3 = Robert Courtney | last4 = Matthees | first4 = Alem | authorlink4 = Alem Matthees | last5 = Tuller | first5 = David | authorlink5 = David Tuller | last6 = Geraghty | first6 = Keith | authorlink6 = Keith Geraghty | last7 = Levin | first7 = Bruce | authorlink7 = | date = 2018-03-22 | title = Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT| url = https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3|journal=BMC Psychology|language=en|volume=6|issue=1 | pages = |doi=10.1186/s40359-018-0218-3|issn=2050-7283|quote=|via=}}</ref> [https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3 (Full Text)]

* 2019, Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT<ref name="OxfordBrookesSurvey">{{Cite web | url = https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf | title =Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT | last = Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS)|location=Oxford Brookes University | date = Feb 27, 2019}}</ref> [https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf (Full text)]

==Learn more==
*[https://blogs.plos.org/absolutely-maybe/2019/02/08/consumer-contested-evidence-why-the-me-cfs-exercise-dispute-matters-so-much/ Consumer contested evidence: Why the ME/CFS exercise dispute matters so much] - [[Hilda Bastian]], 2019
* [http://anilvanderzee.com/for-patients-with-cfs-going-to-the-bathroom-is-similar-to-running-a-marathon/ For patients with CFS, going to the bathroom is similar to running a marathon.] - Anil van der Zee
* [https://www.buzzfeed.com/camillamaxted/this-is-why-i-quit-exercise-therapy This is why I quit Exercise Therapy] - Camilla Maxted, Buzzfeed
*[https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/chronic-fatigue-syndrome-cfs Chronic fatigue syndrome - GET, CBT and Counselling] - NHS Scotland (2020)

==See also==
*[[Biopsychosocial model|Biopsychosocial model]]
*[[Cognitive behavioral therapy]]
*[[Deconditioning]]
*[[Exercise]]
*[[Illness beliefs]]
*[[Intimidation and bullying of PACE trial critics]]
*[[PACE trial]]
*[[Post-exertional malaise]]

==References==
{{Reflist}}

[[Category:Exercise treatments]]
[[Category:Psychological paradigm]]
[[Category:Potential treatments]]
[[Category:Psychological and behavioral therapies]]

Brian Walitt

2025-06-16T13:11:37Z

JaimeS:/* References */ Changed a dead link to go to the wayback

[[File:doctor_brian_wallit.jpg|right]]
'''Brian Walitt''', M.D., M.P.H. is a researcher in the Division of Intramural Research within the [[National Center for Complementary and Integrative Health]] at the [[National Institutes of Health]] (NIH) in the United States and oversees intramural clinical protocols. He is the lead clinical investigator of the [[NIH Post-Infectious ME/CFS Study]].

==Research==
Dr. Walitt's research interests include "pain and related interoceptive disorders (i.e. [[fibromyalgia]], [[chronic fatigue syndrome|chronic fatigue]])" and "social construction of illness and disease."

He is interested in studying "perceptual illness" which he defines as follows:

<blockquote>"In these disorders, a person experiences a range of different bodily sensations, such as pain and fatigue, without any clear external cause. In some, these sensations can be bothersome while in others they can be disabling. The perceptual illnesses that interest me change their names with every generation, with current disorders being called fibromyalgia, chronic fatigue syndrome, and [[Lyme disease|post-Lyme syndrome]]." <ref>https://web.archive.org/web/20201022065553/https://www.georgetownhowardctsa.org/research/meet-our-researchers/brian-t-walitt-md</ref></blockquote>Walitt was one coauthor on a small uncontrolled study (n = 9) in 2013 exploring the relationship between [[wikipedia:Gene_expression|genetic expression]] and [[wikipedia:Pain_catastrophizing|pain catastrophizing]] in fibromyalgia, which used a score of 16 on the Pain Catastrophizing Scale as the threshold for determination of "high catastrophizing".<ref>[http://www.nursingoutlook.org/article/S0029-6554%2813%2900062-6/fulltext/ Gene expression profiles of fatigued fibromyalgia patients with different categories of pain and catastrophizing: A preliminary report]</ref> That is lower than the threshold of 30 recommended by the scale's manual to indicate a "clinically relevant level of catastrophizing," and a mean score for 851 injured workers was 20.90.<ref>{{Cite web|url=https://sullivan-painresearch.mcgill.ca/pdf/pcs/PCSManual_English.pdf|title=The Pain Catastrophizing Scale User Manual|website=web.archive.org|archive-url=https://web.archive.org/web/20141021234111/https://sullivan-painresearch.mcgill.ca/pdf/pcs/PCSManual_English.pdf|archive-date=21 October 2014|access-date=2025-06-15}}</ref> The high catastrophizing subgroup (n = 5) in the study averaged a pain catastrophizing score of 23.6, below the threshold recommended by the scale manual. The authors concluded that "specific physiological pathways may possibly delineate pain and catastrophizing mechanisms."

==Views on Fibromyalgia and ME/CFS==

Walitt stated in 2015 his belief that [[fibromyalgia]] is a "psychosomatic experience," a variant of normal, and not an abnormal disease state that should be medicalized.<ref>[http://www.familypracticenews.com/specialty-focus/rheumatology/single-article-page/video-fibromyalgia-doesnt-fit-the-disease-model/e913134880916685f3005dac5459ab88.html VIDEO: Fibromyalgia doesn’t fit the disease model]</ref> He stated that fibromyalgia is not a disease but rather a way of "dealing with the difficulties of just being a human.”<ref>[http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/ NIH lead clinical investigator thinks CFS and fibro are somatoform], #MEAction, February 20, 2016</ref>

In a 2015 paper on [[chemotherapy]] related [[cognitive dysfunction]]<ref>[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4750385/ Chemobrain: A critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy]</ref> co-authored by Walitt, [[fibromyalgia]] and [[chronic fatigue syndrome]] are referred to as [[somatoform]] illnesses, with their hallmark being a "...discordance between the severity of subjective experience and that of objective impairment...".

Walitt also wrote in 2013 that "Fibromyalgia is closely allied with and often indistinguishable from [[neurasthenia]]" and goes on to claim that "Time brings clarity to confusing illnesses of the past, and we now recognize that hysteria, neurasthenia, and railway spine were almost always psychogenic disorders."<ref>[http://www.nature.com/nrrheum/journal/v9/n12/abs/nrrheum.2013.96.html/ Culture, science and the changing nature of fibromyalgia]</ref>

Discussing the results of the NIH Post-Infectious ME/CFS study, Walitt said in 2024 that "Rather than physical exhaustion or a lack of motivation, fatigue may arise from a mismatch between what someone thinks they can achieve and what their bodies perform."<ref>{{Cite news|url=https://www.nih.gov/news-events/nih-research-matters/insight-into-mechanisms-mecfs|title=Insight into mechanisms of ME/CFS|work=National Institutes of Health (NIH)|access-date=2025-06-15|language=en}}</ref>

==Notable studies==

* 2024, Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome [https://www.nature.com/articles/s41467-024-45107-3 (Full text)]

*2020, Characterization of post–exertional malaise in patients with myalgic encephalomyelitis/chronic fatigue syndrome<ref name="Stussman2020">{{Cite journal | last = Stussman | first = Barbara | author-link = | last2 = Williams | first2 = Ashley | author-link2 = | last3 = Snow | first3 = Joseph | author-link3 = Joseph Snow | last4 = Gavin | first4 = Angelique | author-link4 = | last5 = Scott | first5 = Remle | author-link5 = | last6 = Nath | first6 = Avindra | author-link6 = Avindra Nath | last7 = Walitt | first7 = Brian | author-link8 = Brian Walitt | date = 2020 | title = Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | url =https://www.frontiersin.org/articles/10.3389/fneur.2020.01025/full | journal = Frontiers in Neurology|language=English | volume = 11 | issue = | pages=|doi=10.3389/fneur.2020.01025|issn=1664-2295|pmc=|pmid=|access-date=|quote=|via=}}</ref> [https://www.frontiersin.org/articles/10.3389/fneur.2020.01025/full (Full text)]
*2015, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4750385/ Chemobrain: A critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy]
*2015, [http://europepmc.org/abstract/med/26717948 Neuroimaging of Central Sensitivity Syndromes: Key Insights from the Scientific Literature]
*2013, Increased Brain White Matter Axial Diffusivity Associated with Fatigue, Pain and Hyperalgesia in Gulf War Illness [http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0058493 (Full Text)]<ref>Rayhan RU, Stevens BW, Timbol CR, Adewuyi O, Walitt B, VanMeter JW, [[James Baraniuk|Baraniuk JN]]. (2013) Increased Brain White Matter Axial Diffusivity Associated with Fatigue, Pain and Hyperalgesia in Gulf War Illness. PLoS ONE 8(3): e58493. https://doi.org/10.1371/journal.pone.0058493</ref>
*2012, [https://www.arthritis-research.org/files/Wolfe%20(2012)%20Culture,%20science%20and%20the%20changing%20nature%20of%20fibromyalgia%20-%20NRR%20submission%20version.pdf The Changing Nature of Fibromyalgia]
*2007, [http://www.ncbi.nlm.nih.gov/pubmed/17634904 The effects of multidisciplinary therapy on positron emission tomography of the brain in fibromyalgia: a pilot study]

==Talks and interviews==
*2015, [https://www.youtube.com/watch?v=vGOZ-Rfcjmc VIDEO: Fibromyalgia: Finding a new narrative] (there is a transcript<ref>[http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/ NIH lead clinical investigator thinks CFS and fibro are somatoform]</ref>)

==Online presence==
*[http://www.ncbi.nlm.nih.gov/pubmed/?term=Walitt%5BAuthor%5D PubMed - Brian Walitt]
==Online presence==
*PubMed
*Twitter
*Facebook
*LinkedIn
*[https://nccih.nih.gov/research/intramural/laboratory-clinical-investigations-branch/staff/walittb NIH - Dr Brian Walitt]
*[https://www.arthritis-research.org/research/brian-walitt-md-mph Arthritis Research - Brian Walitt]

==See also==
*[[NIH Post-Infectious ME/CFS Study]]
*[[Avindra Nath]]

==Learn more==
*2009, [http://cfsnova.com/sp-Walitt.html#events Fibromyalgia 201]
*2012, [https://www.arthritis-research.org/files/Wolfe%20%282012%29%20Culture,%20science%20and%20the%20changing%20nature%20of%20fibromyalgia%20-%20NRR%20submission%20version.pdf The Changing Nature of Fibromyalgia Frederick Wolfe and Brian Walitt]
*2013, [https://www.youtube.com/watch?v=1DTwkooHUF8 Demystifying Medicine 2013 - Pain: How It Happens and What Can Be Done?]
*2015, [https://www.youtube.com/watch?v=FmSKgd-940s Prevalence of Fibromyalgia in Elderly Women]
*2016, [http://www.cortjohnson.org/forums/threads/the-psychosomatic-researcher-in-the-nihs-big-chronic-fatigue-syndrome-me-cfs-study.3757/ The Psychosomatic Researcher in the NIH's Big Chronic Fatigue Syndrome (ME/CFS) Study]
*2016, [http://www.meaction.net/2016/02/23/nihs-initial-response-to-article-and-comments-on-walitt/ NIH's initial response to comments and article on Walitt]
*2016, [http://thoughtsaboutme.com/2016/02/21/brian-walitts-radical-bias-disorders-of-subjective-perception-mecfs-as-normal-life-experience/ Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?]

==References==
{{Reflist}}

[[Category:Researchers]]
[[Category:US researchers]]
[[Category:United States National Institutes of Health officials]]
[[Category:NIH post-infectious ME/CFS study investigator]]
[[Category:Psychological paradigm proponents]]

Brian Walitt

2025-06-16T13:09:36Z

JaimeS:/* Research */ just changed capitalization (disease names are not capitalized unless they are named after a person, i.e. Huntington's.)

[[File:doctor_brian_wallit.jpg|right]]
'''Brian Walitt''', M.D., M.P.H. is a researcher in the Division of Intramural Research within the [[National Center for Complementary and Integrative Health]] at the [[National Institutes of Health]] (NIH) in the United States and oversees intramural clinical protocols. He is the lead clinical investigator of the [[NIH Post-Infectious ME/CFS Study]].

==Research==
Dr. Walitt's research interests include "pain and related interoceptive disorders (i.e. [[fibromyalgia]], [[chronic fatigue syndrome|chronic fatigue]])" and "social construction of illness and disease."

He is interested in studying "perceptual illness" which he defines as follows:

<blockquote>"In these disorders, a person experiences a range of different bodily sensations, such as pain and fatigue, without any clear external cause. In some, these sensations can be bothersome while in others they can be disabling. The perceptual illnesses that interest me change their names with every generation, with current disorders being called fibromyalgia, chronic fatigue syndrome, and [[Lyme disease|post-Lyme syndrome]]." <ref>[http://georgetownhowardctsa.org/researchers/researcher-stories/brian-t--walitt- Georgetown-Howard Universities Center for Clinical and Translational Science]</ref></blockquote>Walitt was one coauthor on a small uncontrolled study (n = 9) in 2013 exploring the relationship between [[wikipedia:Gene_expression|genetic expression]] and [[wikipedia:Pain_catastrophizing|pain catastrophizing]] in fibromyalgia, which used a score of 16 on the Pain Catastrophizing Scale as the threshold for determination of "high catastrophizing".<ref>[http://www.nursingoutlook.org/article/S0029-6554%2813%2900062-6/fulltext/ Gene expression profiles of fatigued fibromyalgia patients with different categories of pain and catastrophizing: A preliminary report]</ref> That is lower than the threshold of 30 recommended by the scale's manual to indicate a "clinically relevant level of catastrophizing," and a mean score for 851 injured workers was 20.90.<ref>{{Cite web|url=https://sullivan-painresearch.mcgill.ca/pdf/pcs/PCSManual_English.pdf|title=The Pain Catastrophizing Scale User Manual|website=web.archive.org|archive-url=https://web.archive.org/web/20141021234111/https://sullivan-painresearch.mcgill.ca/pdf/pcs/PCSManual_English.pdf|archive-date=21 October 2014|access-date=2025-06-15}}</ref> The high catastrophizing subgroup (n = 5) in the study averaged a pain catastrophizing score of 23.6, below the threshold recommended by the scale manual. The authors concluded that "specific physiological pathways may possibly delineate pain and catastrophizing mechanisms."

==Views on Fibromyalgia and ME/CFS==

Walitt stated in 2015 his belief that [[fibromyalgia]] is a "psychosomatic experience," a variant of normal, and not an abnormal disease state that should be medicalized.<ref>[http://www.familypracticenews.com/specialty-focus/rheumatology/single-article-page/video-fibromyalgia-doesnt-fit-the-disease-model/e913134880916685f3005dac5459ab88.html VIDEO: Fibromyalgia doesn’t fit the disease model]</ref> He stated that fibromyalgia is not a disease but rather a way of "dealing with the difficulties of just being a human.”<ref>[http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/ NIH lead clinical investigator thinks CFS and fibro are somatoform], #MEAction, February 20, 2016</ref>

In a 2015 paper on [[chemotherapy]] related [[cognitive dysfunction]]<ref>[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4750385/ Chemobrain: A critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy]</ref> co-authored by Walitt, [[fibromyalgia]] and [[chronic fatigue syndrome]] are referred to as [[somatoform]] illnesses, with their hallmark being a "...discordance between the severity of subjective experience and that of objective impairment...".

Walitt also wrote in 2013 that "Fibromyalgia is closely allied with and often indistinguishable from [[neurasthenia]]" and goes on to claim that "Time brings clarity to confusing illnesses of the past, and we now recognize that hysteria, neurasthenia, and railway spine were almost always psychogenic disorders."<ref>[http://www.nature.com/nrrheum/journal/v9/n12/abs/nrrheum.2013.96.html/ Culture, science and the changing nature of fibromyalgia]</ref>

Discussing the results of the NIH Post-Infectious ME/CFS study, Walitt said in 2024 that "Rather than physical exhaustion or a lack of motivation, fatigue may arise from a mismatch between what someone thinks they can achieve and what their bodies perform."<ref>{{Cite news|url=https://www.nih.gov/news-events/nih-research-matters/insight-into-mechanisms-mecfs|title=Insight into mechanisms of ME/CFS|work=National Institutes of Health (NIH)|access-date=2025-06-15|language=en}}</ref>

==Notable studies==

* 2024, Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome [https://www.nature.com/articles/s41467-024-45107-3 (Full text)]

*2020, Characterization of post–exertional malaise in patients with myalgic encephalomyelitis/chronic fatigue syndrome<ref name="Stussman2020">{{Cite journal | last = Stussman | first = Barbara | author-link = | last2 = Williams | first2 = Ashley | author-link2 = | last3 = Snow | first3 = Joseph | author-link3 = Joseph Snow | last4 = Gavin | first4 = Angelique | author-link4 = | last5 = Scott | first5 = Remle | author-link5 = | last6 = Nath | first6 = Avindra | author-link6 = Avindra Nath | last7 = Walitt | first7 = Brian | author-link8 = Brian Walitt | date = 2020 | title = Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | url =https://www.frontiersin.org/articles/10.3389/fneur.2020.01025/full | journal = Frontiers in Neurology|language=English | volume = 11 | issue = | pages=|doi=10.3389/fneur.2020.01025|issn=1664-2295|pmc=|pmid=|access-date=|quote=|via=}}</ref> [https://www.frontiersin.org/articles/10.3389/fneur.2020.01025/full (Full text)]
*2015, [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4750385/ Chemobrain: A critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy]
*2015, [http://europepmc.org/abstract/med/26717948 Neuroimaging of Central Sensitivity Syndromes: Key Insights from the Scientific Literature]
*2013, Increased Brain White Matter Axial Diffusivity Associated with Fatigue, Pain and Hyperalgesia in Gulf War Illness [http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0058493 (Full Text)]<ref>Rayhan RU, Stevens BW, Timbol CR, Adewuyi O, Walitt B, VanMeter JW, [[James Baraniuk|Baraniuk JN]]. (2013) Increased Brain White Matter Axial Diffusivity Associated with Fatigue, Pain and Hyperalgesia in Gulf War Illness. PLoS ONE 8(3): e58493. https://doi.org/10.1371/journal.pone.0058493</ref>
*2012, [https://www.arthritis-research.org/files/Wolfe%20(2012)%20Culture,%20science%20and%20the%20changing%20nature%20of%20fibromyalgia%20-%20NRR%20submission%20version.pdf The Changing Nature of Fibromyalgia]
*2007, [http://www.ncbi.nlm.nih.gov/pubmed/17634904 The effects of multidisciplinary therapy on positron emission tomography of the brain in fibromyalgia: a pilot study]

==Talks and interviews==
*2015, [https://www.youtube.com/watch?v=vGOZ-Rfcjmc VIDEO: Fibromyalgia: Finding a new narrative] (there is a transcript<ref>[http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/ NIH lead clinical investigator thinks CFS and fibro are somatoform]</ref>)

==Online presence==
*[http://www.ncbi.nlm.nih.gov/pubmed/?term=Walitt%5BAuthor%5D PubMed - Brian Walitt]
==Online presence==
*PubMed
*Twitter
*Facebook
*LinkedIn
*[https://nccih.nih.gov/research/intramural/laboratory-clinical-investigations-branch/staff/walittb NIH - Dr Brian Walitt]
*[https://www.arthritis-research.org/research/brian-walitt-md-mph Arthritis Research - Brian Walitt]

==See also==
*[[NIH Post-Infectious ME/CFS Study]]
*[[Avindra Nath]]

==Learn more==
*2009, [http://cfsnova.com/sp-Walitt.html#events Fibromyalgia 201]
*2012, [https://www.arthritis-research.org/files/Wolfe%20%282012%29%20Culture,%20science%20and%20the%20changing%20nature%20of%20fibromyalgia%20-%20NRR%20submission%20version.pdf The Changing Nature of Fibromyalgia Frederick Wolfe and Brian Walitt]
*2013, [https://www.youtube.com/watch?v=1DTwkooHUF8 Demystifying Medicine 2013 - Pain: How It Happens and What Can Be Done?]
*2015, [https://www.youtube.com/watch?v=FmSKgd-940s Prevalence of Fibromyalgia in Elderly Women]
*2016, [http://www.cortjohnson.org/forums/threads/the-psychosomatic-researcher-in-the-nihs-big-chronic-fatigue-syndrome-me-cfs-study.3757/ The Psychosomatic Researcher in the NIH's Big Chronic Fatigue Syndrome (ME/CFS) Study]
*2016, [http://www.meaction.net/2016/02/23/nihs-initial-response-to-article-and-comments-on-walitt/ NIH's initial response to comments and article on Walitt]
*2016, [http://thoughtsaboutme.com/2016/02/21/brian-walitts-radical-bias-disorders-of-subjective-perception-mecfs-as-normal-life-experience/ Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?]

==References==
{{Reflist}}

[[Category:Researchers]]
[[Category:US researchers]]
[[Category:United States National Institutes of Health officials]]
[[Category:NIH post-infectious ME/CFS study investigator]]
[[Category:Psychological paradigm proponents]]

MEpedia talk:Discussion forum and Help desk

2025-06-06T01:18:07Z

JaimeS:/* Translation of MEpedia into different languages -- Ajoe04 (talk) 17:23, June 3, 2025 (UTC) */

== Translation of MEpedia into different languages -- [[User:Ajoe04|Ajoe04]] ([[User talk:Ajoe04|talk]]) 17:23, June 3, 2025 (UTC) ==

Hi,
I would like to translate - maybe using AI - the wonderful documentation of MEpedia into other languages.
Who knows if different languages are supported within MEpedia? (if I got to User -> Preferences -> I see an "Internal Error" page *1.)
Has some else interest in this topic?
Or some technical background?
My aim would be to have different languages for each article.

*1) f441ac7ffef0] 2025-06-02 15:00:25: Fatal exception of type "DomainException"

===Re: Translation of MEpedia into different languages -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 01:17, June 6, 2025 (UTC)===

: We have done this for the ten most popular pages on MEpedia and will be adding them soon! We used translators and sensitivity readers who have lived experience. This doesn't mean the project is totally done, but you should wait to see how we've chosen to do the work before engaging on this, in my opinion.

Talk:Whitney Dafoe

2025-05-15T16:59:47Z

JaimeS:/* Removed edit saying that ME/CFS is "nowadays called Long COVID" */ new section

The photos were taken during the illness and show his disease progression. They appeared in an article about Whitney written by Stephanie Land and printed in The Huffington Post in March 2016.

https://www.huffingtonpost.com/-stephanie-land/chronic-fatigue-syndrome-_1_b_9513498.html

I don't think this is a before/after photo. I think he is sick in both.

== Removed edit saying that ME/CFS is "nowadays called Long COVID" -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 16:59, May 15, 2025 (UTC) ==

Long COVID arises from SARS-CoV-2 only and does not describe any case of ME or ME/CFS, especially not cases that were triggered before SARS-CoV-2 existed.

Whitney Dafoe

2025-05-15T16:57:44Z

JaimeS:Reverted edits from 49.36.191.249. ME/CFS is not Long COVID; Long COVID only arises from SARS-CoV-2 infection.

[[File:Whitney Dafoe - before illness.png|300px|thumb|right|Whitney before becoming ill with ME]]
'''Whitney Dafoe''' is the son of Dr. [[Ronald Davis]] and Dr. [[Janet Dafoe]] and is severely affected by [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]] (ME/CFS).

Prior to becoming [[Severe and very severe ME#verysevere|very severely ill]] with ME/CFS, Dafoe was an adventurer and photographer who traveled extensively. His journeys took him to all 50 states, India, Nepal, and Ecuador.<ref name="stanmed">{{Cite web|url=http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html | title = The puzzle solver | last = Archibald | first=Timothy | authorlink= | date = 2016 | website = Stanford Medicine|language=en|archive-url=|archive-date=|url-status=|access-date=2020-01-20}}</ref>

==Unrest==
[[File:Whitney.JPG|300px|thumb|Whitney has a very severe form of ME. He can no longer speak nor handle contact with anyone but his parents due to [[visual dysfunction]]]]
Whitney Dafoe was one of several patients with severe ME who featured in the film [[Unrest]], which also included interviews with his mother, psychologist Dr [[Janet Dafoe]], and his father, scientist and researcher Dr [[Ronald Davis|Ron Davis]].<br style="clear">

==After the release of ''Unrest''==
After the release of the movie [[Unrest]], public interest in Whitney Dafoe increased, with Google suggesting people search frequently searching for his obituary or death - despite the fact he remains alive despite being so severely ill<ref name="twitter" /> - as well as seeking information about [[Ativan]], also known as Lorazepam, a drug that was shown to briefly help him in ''Unrest''.<ref name="Brea2019" /> In summer 2019, Whitney finally met ME advocate and film maker [[Jen Brea|Jennifer Brea]].<ref name="Brea2019">{{Cite web|url=https://medium.com/@jenbrea/meeting-whitney-cf179fdad0a9 | title = Meeting Whitney | last =Brea | first = Jennifer | authorlink=Jennifer Brea | date = 2019-06-03 | website = Medium|language=en|archive-url=|archive-date=|url-status=|access-date=2020-01-20}}</ref>

In December 2019, at Whitney's request, his sister Ashley Haugen, created a twitter account for him, followed by a Facebook page in January 2020.<ref name="twitter">{{Cite web|url=http://www.twitter.com/dafoewhitney | title = Whitney Dafoe (@DafoeWhitney)|website=Twitter|language=en|access-date=2020-01-20}}</ref><ref>{{Cite web|url=https://www.facebook.com/whitneydafoe/ | title = Whitney Dafoe|website=Facebook|language=en|access-date=2020-01-20}}</ref>

==Improvement in health ==
In June 2020, Whitney posted on Facebook to say that he was experiencing what seemed to be a temporary improvement, and was able to write and communicate using his cell phone briefly.<ref name="Jun2020update">{{Cite web|url=https://www.facebook.com/whitneydafoe/posts/169789574558743 | title = Whitney Dafoe | last =Dafoe | first = Whitney | authorlink=Whitney Dafoe | date = Jun 11, 2020 | website = Facebook|language=en|archive-url=|archive-date=|url-status=|access-date=2020-06-23}}</ref> He stated that he didn't know the reason for the improvement, but it may have been linked to an increased dose of Cortef ([[hydrocortisone]]) or [[Aripiprazole|Abilify]] (aripiprazole).<ref name="Jun2020update" /> Dafoe continues to rely fully on a [[tube feeding|feeding tube]] for nutrition and hydration, and can't tolerate the noise of others speaking without being sedated.<ref name="stanmed"/><ref name="Dafoe2021"/>

==The Puzzle Solver==
In 2021, writer [[Tracie White]] and [[Ronald Davis|Dr Ronald W. Davis]], Whitney's father, published the book [[The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole his Son]], describing Whitney's battle with [[myalgic encephalomyelitis]] and his father's research to find a cure.<ref name="puzzlesolverbook">{{Cite book | title=The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole His Son|pages=|isbn=9781549177545|edition=1st|volume=|language=en-US|title-link=The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole his Son | url = |access-date=| date = January 31, 2021|publisher=Hachette Books | last =White | first = Tracie | author-link = Tracie White | last2 = Davis | first2 = Ronald W. | author-link2 = Ronald Davis|veditors=|others=|doi=|oclc=|quote=|archive-url=|archive-date=|location=New York}}</ref>

==The Living Death==
In 2022, Whitney Dafoe was the Gold Winner at the European Photography Awards for his documentary entry ''The Living Death'', a series of photographs of his experience living with severe ME.<ref name="EPA2022">{{Cite web | title = Documentary - The Living Death|url=https://europeanphotoawards.com/winner-info.php?id=763|access-date=Aug 24, 2022 | website = European Photography Awards}}</ref>

== Articles and interviews ==
* 2021, Extremely Severe ME/CFS—A Personal Account,<ref name="Dafoe2021">{{Cite journal | last =Dafoe | first = Whitney | authorlink=Whitney Dafoe | date = 2021-04-27 | title = Extremely Severe ME/CFS—A Personal Account|url=https://www.mdpi.com/2227-9032/9/5/504/htm|journal=Healthcare|language=en|volume=9|issue=5|pages=504|doi=10.3390/healthcare9050504|issn=2227-9032}}</ref> - [https://www.mdpi.com/2227-9032/9/5/504/htm (Full text)]

==Online presence==
*[https://www.facebook.com/whitneydafoe Facebook]
*[http://www.twitter.com/dafoewhitney Twitter]
*[https://www.instagram.com/whitneydafoe/ Instagram]
*[http://www.whitneydafoe.com Website]
*[https://www.whitneydafoe.com/mecfs/ ME/CFS Blog]

==See also==
*[[Janet Dafoe]]
*[[Ronald Davis]]
*[[Open Medicine Foundation]]
*[[Severe and very severe ME]]
==Learn more==
*Jul 10, 2015, [https://www.youtube.com/watch?v=9_HwOUiImvw Invisible Illness - Stories of Chronic Fatigue Syndrome]<ref>{{Cite web|url=https://www.youtube.com/watch?v=9_HwOUiImvw | title = Invisible Illness - Stories of Chronic Fatigue Syndrome | last =Dafoe | first = Whitney | date = Jul 10, 2015 | website = YouTube|publisher=Palo Alto Online|archive-url=|archive-date=|url-status=|access-date=}}</ref>
*Oct 5, 2015, [https://www.washingtonpost.com/national/health-science/with-his-son-terribly-ill-a-top-scientist-takes-on-chronic-fatigue-syndrome/2015/10/05/c5d6189c-4041-11e5-8d45-d815146f81fa_story.html With his son terribly ill, a top scientist takes on chronic fatigue syndrome]<ref>{{Cite web|url=https://www.washingtonpost.com/national/health-science/with-his-son-terribly-ill-a-top-scientist-takes-on-chronic-fatigue-syndrome/2015/10/05/c5d6189c-4041-11e5-8d45-d815146f81fa_story.html | title = With his son terribly ill, a top scientist takes on chronic fatigue syndrome | last =Tucker | first = Miriam| date = Oct 5, 2015 | website = Washington Post|language=en|archive-url=|archive-date=|url-status=|access-date=2018-10-13}}</ref>
*Oct 19, 2015, [http://www.bbc.co.uk/programmes/p035n9g6 Scientist dad searches for cure for sick son]<ref>{{Cite web|url=https://www.bbc.co.uk/programmes/p035n9g6 | title = Scientist dad searches for cure for sick son, Newshour - BBC World Service | last = | first = | date = Oct 19, 2015 | website = BBC|language=en-GB|archive-url=|archive-date=|url-status=|access-date=2018-10-13}}</ref>
*Nov 4, 2015, [http://www.npr.org/sections/health-shots/2015/11/04/454335755/chronic-fatigue-syndrome-research-gains-funding-and-controversy Chronic Fatigue Syndrome Research Gains Funding, And Controversy]<ref>{{Cite news | url=http://www.npr.org/sections/health-shots/2015/11/04/454335755/chronic-fatigue-syndrome-research-gains-funding-and-controversy | title = Chronic Fatigue Syndrome Research Gains Funding, And Controversy | last =Tucker | first = Miriam| date = Nov 4, 2015 |work=NPR.org|access-date=2018-10-13|archive-url=|archive-date=|url-status=|publisher=NPR|language=en}}</ref>
*2016, [http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html The puzzle solver: A researcher changes course to help his son]
*Mar 24, 2016, [http://stepville.com/2016/03/24/therein-lies-your-calling/ Therein Lies your Calling]<ref>{{Cite news | url=http://stepville.com/2016/03/24/therein-lies-your-calling/ | title = Therein Lies your Calling | first = Stephanie | last =Land| date = 2016-03-24|work=Stepville|access-date=2018-10-13|language=en-US}}</ref>
*May 2, 2016, [https://www.youtube.com/watch?v=vfZwqLjDR4w Whitney Dafoe Palo Alto Online 2015 video - short]<ref>{{Cite web|url=https://www.youtube.com/watch?v=vfZwqLjDR4w | title = Whitney Dafoe Palo Alto Online 2015 video - short | last =Dafoe | first = Whitney | date = May 2, 2016 | website = YouTube|publisher=Mary Dimmock|archive-url=|archive-date=|url-status=|access-date=}}</ref>
*Oct 24, 2016, [https://blog.longreads.com/2016/10/24/the-love-of-a-thousand-muskoxen-grieving-a-love-lost-to-time-and-sickness/ The Love of a Thousand Muskoxen: Grieving a Love Lost to Time and Sickness]<ref>{{Cite news | url=https://blog.longreads.com/2016/10/24/the-love-of-a-thousand-muskoxen-grieving-a-love-lost-to-time-and-sickness/ | title = The Love of a Thousand Muskoxen: Grieving a Love Lost to Time and Sickness | last =Land | first = Stephanie | date = 2016-10-24|work=Longreads|access-date=2018-10-13|archive-url=|archive-date=|url-status=|language=en-US}}</ref>
* Jun 3, 2019, [https://medium.com/@jenbrea/meeting-whitney-cf179fdad0a9 Meeting Whitney] - Jen Brea

==References==
{{Reflist}}

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

Homeopathy

2024-09-20T13:29:01Z

JaimeS:/* Learn more */ Removed the Learn More section-- I'm familiar with the sources and these are not scholarly.

Homeopathy

2024-09-20T13:27:38Z

JaimeS:Reminder that YouTube is not considered a scholarly source, even if a scholar is speaking. Further, individual testimonials of improvement are not considered a scholarly source. These have been updated/improved where possible and removed where not possible. Will continue to remove inappropriate citations in the Learn More section.

Portal:Myalgic Encephalomyelitis/Doctor

2024-09-14T01:44:01Z

JaimeS:and again :)

==Find a doctor==

*MEAction maintains [https://www.meaction.net/resources/find-your-doctor/ a directory of medical providers] classified by region and specialty

==Find support==

*[http://www.meaction.net/groups Join an #MEAction ] support, social or advocacy group
*Find a UK [http://me-pedia.org/wiki/Category:British_patient_groups organization or support group]
*Find a US [http://me-pedia.org/wiki/Category:American_patient_groups organization or support group]
*View [http://me-pedia.org/wiki/Category:Patient_groups_by_country all patient groups]

Portal:Myalgic Encephalomyelitis/Doctor

2024-09-14T01:43:42Z

JaimeS:once more, with feeling

==Find a doctor==

*MEAction maintains [https://www.meaction.net/resources/find-your-doctor/ A directory of medical providers] classified by region and specialty

==Find support==

*[http://www.meaction.net/groups Join an #MEAction ] support, social or advocacy group
*Find a UK [http://me-pedia.org/wiki/Category:British_patient_groups organization or support group]
*Find a US [http://me-pedia.org/wiki/Category:American_patient_groups organization or support group]
*View [http://me-pedia.org/wiki/Category:Patient_groups_by_country all patient groups]

Portal:Myalgic Encephalomyelitis/Doctor

2024-09-14T01:42:52Z

JaimeS:Updated the find your clinician link and the language

==Find a doctor==

*MEAction maintains a directory[https://www.meaction.net/resources/find-your-doctor/] of medical providers classified by region and specialty

==Find support==

*[http://www.meaction.net/groups Join an #MEAction ] support, social or advocacy group
*Find a UK [http://me-pedia.org/wiki/Category:British_patient_groups organization or support group]
*Find a US [http://me-pedia.org/wiki/Category:American_patient_groups organization or support group]
*View [http://me-pedia.org/wiki/Category:Patient_groups_by_country all patient groups]

Portal:Myalgic Encephalomyelitis/Doctor

2024-09-14T01:41:11Z

JaimeS:Updated the find your clinician link

==Find a doctor==

*MEAction [https://www.meaction.net/resources/find-your-doctor/] of physicians, support groups and organizations

==Find support==

*[http://www.meaction.net/groups Join an #MEAction ] support, social or advocacy group
*Find a UK [http://me-pedia.org/wiki/Category:British_patient_groups organization or support group]
*Find a US [http://me-pedia.org/wiki/Category:American_patient_groups organization or support group]
*View [http://me-pedia.org/wiki/Category:Patient_groups_by_country all patient groups]

Category:Diets

2024-08-12T16:20:30Z

JaimeS:Removed "no dietary change can ME/CFS". Change? Cure? Also, an uncited claim and undisprovable, since there is no evidence of every diet on earth having been tried. Please stick to what statements can be feasibly supported.

Various diets and nutritional protocols have been proposed for the treatment and management of [[chronic fatigue syndrome]] and [[myalgic encephalomyelitis]]. Many patients with [[ME/CFS]] also take [[:Category:Supplements|dietary supplements]].

==Please create pages for==
*[[Gluten-free diet]]
(remove any blue links from this section)

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

[[Category:Potential treatments]]

Brain retraining

2024-08-12T16:17:31Z

JaimeS:Protected "Brain retraining":Excessive vandalism/advertising/spam:Edit wars: this page has moved from glowing testimonial to excoriation and back. Please keep edits factual, include only relevant information, and cite your claims. ([Edit=Allow only established/autoconfirmed users (semi-protection)] (indefinite) [Move=Allow only established/autoconfirmed users (semi-protection)] (indefinite))

'''Brain training''' or '''brain re-training''' is a proposed treatment approach positing that the illness is a result of the dysfunction of the autonomic [[nervous system]] and that the disease may be improved or cured through cognitive therapy. The autonomic nervous system (ANS) is associated with the [[Gastrointestinal system|digestive]], [[Endocrine system|endocrine]], [[Circulatory system|circulatory]] and other systems that tend to be involved with ME/CFS. Brain retraining has been championed by [[Ashok Gupta]]<ref>{{Cite web | url = https://www.guptaprogram.com | title = The Gupta Program | website = guptaprogram.com|language=en-US | access-date = 2019-04-06 | date = | last = | first = | author-link = |archive-url=|archive-date=|url-status=}}</ref>, [[Dan Neuffer]],<ref>{{Cite news |url =https://cfsunravelled.com/whydan/ | title = Author of CFS Unravelled that recovered from CFS|work=CFS Unravelled | access-date = 2019-04-06|language=en-US}}</ref>, and [[Ben Ahrens]]<ref>{{Cite web | url = https://www.re-origin.com/ | title = re-origin | website = re-origin.com | language=en-US | access-date = 2024-08-08}}</ref>.

Brain retraining posits that the disease begins and perpetuates itself through the brain and nervous system becoming sensitized to certain triggers resulting in a variety of symptoms, which themselves become triggers for symptoms, resulting in a self-reinforcing feedback loop.<ref>{{Cite journal | last = Gupta | first = Ashok | author-link = | date = 2002 | title = Unconscious amygdalar fear conditioning in a subset ofchronic fatigue syndrome patients |url =https://www.guptaprogram.com/wp-content/uploads/2019/02/cfs-hypothesis-medical-hypotheses-article.pdf | journal=Medical Hypotheses | volume = 59 | issue = 6 | pages = 727–735|quote=|via=}}</ref> Brain training proposes that the way beyond this ANS dysfunction involves "rewiring" the nervous system through breathing exercises, interrupting thought patterns, and gaining new perspectives on physical or emotional responses.

To date there is very limited empirical research on brain training and ME/CFS. Published research on the effects on ME/CFS is limited to a clinical audit Gupta conducted of the effect of his [[amygdala retraining]] techniques for 33 of his patients.<ref name=":0">{{Cite journal | last = Gupta | first = Ashok | author-link = | date = September 2010 | title = Can amygdala retraining techniques improve the wellbeing of patients with chronic fatigue syndrome | url =https://www.guptaprogram.com/wp-content/uploads/2019/02/amygdala-retraining-jhh-sept-2010.pdf | journal=Journal of holistic healthcare | volume = 7 | issue = 2 | pages = 12-15|quote=|via=}}</ref> He found that over the course of a year, 93% of the 27 who completed the program reported their functioning improved, with 67% reporting significant improvement (regaining at least 80% of their pre-illness functioning). However this study included no randomization, control group, controlling for other treatments, or blinding to prevent [[Researcher bias|researcher]] and [[sample bias]].<ref name=":0" />

[[Category:Potential treatments]]

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

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

== References ==
{{Reflist}}

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

Brain retraining

2024-08-12T16:13:07Z

JaimeS:Reminder to all that tone must be neutral, all information must be cited, and all information included must be relevant. We've swung from calling this pseudoscience, to replacing that with glowing patient testimonials, and back again. This page is now locked.

Systemic Exertion Intolerance Disease

2024-06-18T23:45:42Z

JaimeS:Changed protection settings for "Systemic Exertion Intolerance Disease" ([Edit=Allow only administrators (full protection)] (indefinite) [Move=Allow only administrators (full protection)] (indefinite))

The diagnostic criteria currently recommended by the [[Centers for Disease Control and Prevention|Centers for Disease Control]] is the '''[https://www.cdc.gov/me-cfs/hcp/diagnosis/iom-2015-diagnostic-criteria-1.html Institute of Medicine criteria (2015)]'''<ref name=":0">{{Cite web|url=https://www.cdc.gov/me-cfs/hcp/diagnosis/iom-2015-diagnostic-criteria-1.html|title=IOM 2015 Diagnostic Criteria|last=CDC|date=2024-05-22|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-18}}</ref> or sometimes the '''National Academy of Medicine criteria''', as the IOM is now called the NAM. Systemic Exertion Intolerance Disease, or SEID, was the name initially proposed by the committee; however it has not been adopted as a new name for ME/CFS by US organizations; CDC and NIH both refer to the disease as ME/CFS when referring to the IOM critera.<ref name=":0" /><ref name=":1">{{Cite web|url=https://www.nih.gov/mecfs/research|title=ME/CFS Research|date=2016-09-29|website=National Institutes of Health (NIH)|language=EN|access-date=2024-06-18}}</ref>

The IOM criteria was first proposed and published by an Institute of Medicine committee on [[Myalgic Encephalomyelitis]]/<wbr>[[Chronic Fatigue Syndrome]] (ME/CFS) in 2015, at the request of the CDC.<ref name="beyondMECFS" />

==<span id="CDC">Symptoms</span>==
===Core symptoms===
* [[Greatly lowered ability to do activities that were usual before the illness|Decrease in functional capacity]] with [[fatigue]] that lasts six months or longer. People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS:
**Can be severe.
**Is not a result of unusually difficult activity.
**Is not relieved by sleep or rest.
**Was not a problem before becoming ill (not life-long).
* [[post-exertional malaise]] (PEM)
* [[unrefreshing sleep]]; '''''and'''''
'''''either'''''
* [[Cognitive dysfunction|impaired memory or ability to concentrate]]
'''''or'''''
* [[orthostatic intolerance]] (symptoms that occur when standing upright)<ref name="CDC-criteria">{{Cite web|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html | title = Symptoms {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|website=[[Centers for Disease Control and Prevention]] | date = Jan 27, 2021|access-date = 2022-01-03}}</ref><ref name="criteria">{{Cite book|chapter-url=https://www.nap.edu/read/19012/chapter/9|chapter=Proposed Diagnostic Criteria for ME/CFS | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | last =IOM (Institute of Medicine) | first = | authorlink = Institute of Medicine | last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | first2 = | date = 2015 | page=210|publisher=National Academies Press|location=Washington, D.C.|isbn=978-0-309-31689-7|archive-url=|archive-date=|url-status=|access-date=2022-01-03}}</ref><ref name="CDC-IOM-SEIDcriteria">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html | title = IOM 2015 Diagnostic Criteria {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|website=[[Centers for Disease Control and Prevention]] | date = Jan 27, 2021|access-date = 2021-02-25}}</ref><ref name="algorithm">{{Cite web|url= https://www.nap.edu/resource/19012/MECFS_DiagnosticAlgorithm.jpg | title = Diagnostic Algorithm for ME/CFS | last =Institute of Medicine | first = | authorlink = Institute of Medicine | date = 2015 | website = nap.edu|archive-url=|archive-date=|url-status=|access-date=}}</ref>

===Other Common Symptoms===
Many people with ME/CFS also have other symptoms, such as:

*[[Pain not caused by injury]]: The type of pain, where it occurs, and how severe it is varies. The most common types of pain in ME/CFS are:
**[[Myalgia|Muscle pain]] and aches
**[[Arthralgia|Joint pain]] without swelling or redness
**[[Headache]]s, either new or worsening
Some people with ME/CFS may also have:
*[[Tender lymph nodes]] in their neck or armpits
*A [[sore throat]] that happens often
*[[Digestive problems|Digestive issues]], like [[irritable bowel syndrome]]
*[[Chill]]s and [[night sweats]]
*[[Allergy|Allergies]] and sensitivities to foods, odors, chemicals, light, or noise
*[[Paresis|Muscle weakness]]
*[[Dyspnea|Shortness of breath]]
*[[arrhythmia|Irregular heartbeat]]<ref name="CDC-criteria"/>

===Notes===
Orthostatic intolerance is also useful for a more severe presentation of the disease; symptom severity and other symptoms are outlined in the [[Institute of Medicine report]].<ref>{{Cite book | url =https://www.nap.edu/read/19012/chapter/5\ | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | last = | first = |publisher=National Academies of Medicine| year = 2015 |isbn=|editor-link=|location=|pages=141-162|language=en|chapter=5|quote=|editor-last2=|editor-link2=}}</ref>

Adults can be diagnosed at six months of illness and [[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|pediatric]] cases are diagnosed at three months.

==Diagnostic criteria for clinicians==
[[File:SEID algorithm.JPG|400px|thumb|right|Diagnostic Algorithm<ref name="algorithm" />]]
'''Diagnosis requires that the patient have the following three symptoms:'''

1. [[substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities|A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities]], that [[lasts longer than 6 months|persists for more than 6 months]] and is accompanied by [[Chronic fatigue|fatigue]], which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and

2. [[Post-exertional malaise]],* and

3. [[Unrefreshing sleep]]*

'''At least one of the two following manifestations is also required:'''

1. [[Cognitive impairment]]* or

2. [[Orthostatic intolerance]]

: * Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS (SEID) should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.<ref>{{Cite web|url= https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness | last = | first = | date = 2015 | website = nap.edu|archive-url=https://web.archive.org/web/20170615034241/https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf|archive-date=2017-06-15|url-status=|access-date=}}</ref><ref>{{Cite web|url=https://www.nap.edu/resource/19012/MECFS_ProposedDiagnosticCriteria.jpg | title = New diagnostic criteria {{!}} IOM 2015 Diagnostic Criteria {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|website=[[Centers for Disease Control and Prevention]] | date = Jan 27, 2021|access-date = 2022-01-03}}</ref>
:

==Development==
In 2014, the [[U.S. Department of Health and Human Services]] (HHS), the [[National Institutes of Health]] (NIH), the [[Agency for Healthcare Research and Quality]] (AHRQ), the [[Centers for Disease Control and Prevention]] (CDC), the [[Food and Drug Administration]] (FDA), and the [[Social Security Administration]] (SSA) asked the [[Institute of Medicine]] (IOM) to convene an expert committee to examine the evidence base for [[ME/CFS]]. In ''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness'', the committee proposes new diagnostic criteria that will facilitate timely diagnosis and care and enhance understanding among health care providers and the public. These criteria, based on expert analysis and the most up-to-date scientific literature, are streamlined for practical use in the clinical setting. The IOM committee also recommended that the name of the disease be changed—from ME/CFS to systemic exertion intolerance disease (SEID)—to more accurately capture the central characteristics of the illness.<ref name="beyondMECFS">{{Cite web|url= https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness | last = | first = | date = |website=nap.edu | page = 5|archive-url=https://web.archive.org/web/20170615034241/https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf|archive-date=2017-06-15|url-status=|access-date=}}</ref> However, this name was not adopted by government organizations and not embraced by advocacy organizations.<ref name=":0" /><ref name=":1" />

==Authors ==
The committee on the Diagnostic Criteria for [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (ME/CFS) consisted of [[Ellen Wright Clayton]], [[Margarita Alegría]], [[Lucinda Bateman]], [[Lily Chu]], [[Charles Cleeland]], [[Ronald Davis]], [[Betty Diamond]], [[Theodore Ganiats]], [[Betsy Keller]], [[Nancy Klimas]], [[A Martin Lerner]], [[Cynthia Mulrow]], [[Benjamin Natelson]], [[Peter Rowe]], and [[Michael Shelanski]].

== Criticism ==
The Institute of Medicine criteria was met with community criticisms, including the following:
* too few symptoms were required; in particular, nervous and immune system symptoms present for [[Canadian Consensus Criteria|CCC]] and [[International Consensus Criteria|ICC]] criteria were absent
* unclear descriptions of [[post-exertional malaise]]
* absence of [[pain]], which is listed as a "common symptom" but not part of the diagnostic criteria

[[Frank Twisk|Twisk]] (2017) stated that ME and CFS are different illnesses, with ME being a neuromuscular disease and CFS being a partially overlapping fatigue-based illness, and that it was not possible to replace both ME and CFS with a single diagnostic entity. Twisk also stated that SEID included some patients that did not meet either ME or CFS diagnostic criteria.<ref name="TwiskAccurate">{{Cite journal | last = Twisk | first = Frank N.M. | authorlink = Frank Twisk | date = Jun 27, 2017 | title = An Accurate Diagnosis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome requires strict Clinical Case definitions and Objective Test Methods|url=https://www.researchgate.net/profile/Frank_Twisk/publication/318463814_An_Accurate_Diagnosis_of_Myalgic_Encephalomyelitis_and_Chronic_Fatigue_Syndrome_requires_strict_Clinical_Case_definitions_and_Objective_Test_Methods/links/596ca586aca2728ca689c2fa/An-Accurate-Diagnosis-of-Myalgic-Encephalomyelitis-and-Chronic-Fatigue-Syndrome-requires-strict-Clinical-Case-definitions-and-Objective-Test-Methods.pdf|journal=Journal of Medical Diagnostic Methods|volume=6|issue=3|pages=|doi=10.4172/2168-9784.1000249|quote=|via=l}}</ref>

== Clinicians guide ==
The [https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf Report Guide for Clinicians] explains the core symptoms, additional symptoms, diagnostic criteria and more.

===Centers for Disease Control and Prevention (CDC) website===

: IOM criteria information has been incorporated into the CDC's ME/CFS website under the tab [https://www.cdc.gov/me-cfs/healthcare-providers/index.html Information for Healthcare Providers] under the "Resources" heading.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/index.html | title = Information for Healthcare Providers {{!}} ME/CFS {{!}} CDC | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-03}}</ref>

== The Institute of Medicine report ==

'''''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness'''''

===Read the report===
*[https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf Key facts] (two pages)
*[https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf Report brief] (four pages)
*[https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness Download full report] (282 pages)
*[https://www.nap.edu/resource/19012/MECFS_DiagnosticAlgorithm.jpg Diagnostic Algorithm Chart]
*[https://www.nap.edu/resource/19012/MECFS_ProposedDiagnosticCriteria.jpg Proposed Diagnostic Criteria Chart]
*[http://www.nap.edu/read/19012/chapter/1 Read the full 282 page report online]
**[http://www.nap.edu/read/19012/chapter/1 Front matter]
**[http://www.nap.edu/read/19012/chapter/2 Summary]
**[http://www.nap.edu/read/19012/chapter/3 1. Introduction]
**[http://www.nap.edu/read/19012/chapter/4 2. Background]
**[http://www.nap.edu/read/19012/chapter/5 3. Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters]
**[http://www.nap.edu/read/19012/chapter/6 4. Review of the Evidence on Major ME/CFS Symptoms and Manifestations]
**[http://www.nap.edu/read/19012/chapter/7 5. Review of the Evidence on Other ME/CFS Symptoms and Manifestations]
**[http://www.nap.edu/read/19012/chapter/8 6. Pediatric ME/CFS]
**[http://www.nap.edu/read/19012/chapter/9 7. Recommendations]
**[http://www.nap.edu/read/19012/chapter/10 8. Dissemination Strategy]
**[http://www.nap.edu/read/19012/chapter/11 Public Session Agendas]
**[http://www.nap.edu/read/19012/chapter/12 GRADE Grid Template]
**[http://www.nap.edu/read/19012/chapter/13 Disability in ME/CFS]
**[http://www.nap.edu/read/19012/chapter/14 Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms]
**[http://www.nap.edu/read/19012/chapter/15 Biographical Sketches of Committee Members, Consultants, and Staff]

*[https://www.youtube.com/watch?v=Uj1l-tmkRvw "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" Official video presentation]

== Videos ==
*[[Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education]]
:[[CDC]] Posted Video - Dr. [[John Iskander]] of CDC interviews Dr. [[Anthony Komaroff]] (Feb 17, 2016)

*[https://www.youtube.com/watch?v=ZW2Tcsp75a0 SMCI IOM Briefing in Washington, D.C. Full Coverage]<ref>{{Cite web|url=https://www.youtube.com/watch?v=ZW2Tcsp75a0 | title = SMCI IOM Briefing in Washington, D.C. Full Coverage | last = | first = | date = Mar 25, 2015 | website = YouTube|publisher=SolveCFS|archive-url=|archive-date=|url-status=|access-date=}}</ref>
:[[Carol Head]] of [[Solve ME/CFS]], Dr. [[Ellen Wright Clayton]] and [https://en.wikipedia.org/wiki/Morgan_Fairchild Morgan Fairchild]

*[https://www.youtube.com/watch?v=X4Tnt2d-5S8 New Clinical Definitions for ME/CFS - Dr. Lucinda Bateman]<ref>{{Cite web|url=https://www.youtube.com/watch?v=X4Tnt2d-5S8 | title = "New Clinical Definitions for ME/CFS" Dr. Lucinda Bateman | last =Bateman | first = Lucinda | date = Mar 8, 2015 | website = YouTube|publisher=Bateman Horne Center|archive-url=|archive-date=|url-status=|access-date=}}</ref>
:Dr. [[Lucinda Bateman]] of [[Bateman Horne Center]] discusses. (Mar 8, 2015)

==Notable studies==
* 2015, Chronic Fatigue Syndrome versus Systemic Exertion Intolerance Disease<ref name="Jason, Sunn, 2015" /> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4556426/pdf/nihms699325.pdf (Full text)]
* 2015, Unintended Consequences of not Specifying Exclusionary Illnesses for Systemic Exertion Intolerance Disease<ref name=":3">{{Cite journal | last= Jason | first = Leonard A. | author-link = Leonard Jason | last2 = Sunnquist | first2 = Madison | authorlink2 = Madison Sunnquist | last3 = Kot | first3=Bobby | author-link3 = Bobby Kot | last4 = Brown | first4 = Abigail | authorlink4 = Abigail Brown | date = Jun 23, 2015 | title = Unintended Consequences of not Specifying Exclusionary Illnesses for Systemic Exertion Intolerance Disease|url=https://www.mdpi.com/2075-4418/5/2/272|pmid=26854153|pmc=PMC4666441|journal=Diagnostics|language=en|volume=5|issue=2|pages=272–286|doi=10.3390/diagnostics5020272|quote=|via=}}</ref> [https://www.mdpi.com/2075-4418/5/2/272/htm (Full text)]
* 2016, Replacing Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with Systemic Exercise Intolerance Disease Is Not the Way forward<ref name=":4">{{Cite journal | last = Twisk | first = Frank N.M. | authorlink = Frank Twisk|pmid=26861399|pmc=PMC4808825 | date = Feb 6, 2016 | title = Replacing Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with Systemic Exercise Intolerance Disease Is Not the Way forward | url =https://www.mdpi.com/2075-4418/6/1/10|journal=Diagnostics|language=en|volume=6|issue=1|pages=10|doi=10.3390/diagnostics6010010|quote=|via=}}</ref> [https://www.mdpi.com/2075-4418/6/1/10 (Full text)]
* 2016, Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility<ref name="SEIDAsprusten">{{Cite journal | last = Asprusten | first = Tarjei Tørre | authorlink = Tarjei Asprusten | last2 = Sulheim | first2 = Dag | authorlink2 = Dag Sulheim | last3 = Fagermoen | first3=Even | author-link3 = Even Fagermoen | last4 = Winger | first4 = Anette | authorlink4 = Anette Winger | last5 = Skovlund | first5 = Eva | authorlink5 = Eva Skovlund | last6 = Wyller | first6 = Vegard Bruun | authorlink6 = Vegard Bruun Wyller|pmc=PMC5887832 | date =2018-03-16 | title = Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5887832/|journal=BMJ Paediatrics Open|volume=2|issue=1|pages=|doi=10.1136/bmjpo-2017-000233|issn=2399-9772|pmid=29637195|access-date=|quote=|via=}}</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5887832/ (Full text)]
* 2017, Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria<ref name="Chu, 2017" /> [http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1299079?journalCode=rftg20& (Full text)]

==Letters and commentary==
*2017, An Accurate Diagnosis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome requires strict Clinical Case definitions and Objective Test Methods<ref name="TwiskAccurate" /> [https://www.researchgate.net/profile/Frank_Twisk/publication/318463814_An_Accurate_Diagnosis_of_Myalgic_Encephalomyelitis_and_Chronic_Fatigue_Syndrome_requires_strict_Clinical_Case_definitions_and_Objective_Test_Methods/links/596ca586aca2728ca689c2fa/An-Accurate-Diagnosis-of-Myalgic-Encephalomyelitis-and-Chronic-Fatigue-Syndrome-requires-strict-Clinical-Case-definitions-and-Objective-Test-Methods.pdf (Full text)]
*2017, [http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1362750 Article commentary - Differences of opinion on systemic exercise intolerance disease are not ‘mistakes’: a rejoinder to Jason Sunnquist, Gleason and Fox]<ref name="Chu, Valencia, Montoya, 2017" />
*2017, [http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1362780 Article commentary - Mistaken conclusions about systemic exercise intolerance disease being comparable to research case definitions of CFS: A rebuttal to Chu et al.]<ref name="Jason, Sunnquist, Gleason, Fox, 2017" />
*2018, Myalgic Encephalomyelitis, chronic fatigue syndrome, and Systemic Exertion Intolerance Disease: Three distinct clinical entities<ref name="Twisk3DistinctEntities">{{Cite journal | last = Twisk | first = Frank N.M. | authorlink = Frank Twisk | date = Jun 2018 | title = Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Systemic Exertion Intolerance Disease: Three Distinct Clinical Entities|url=https://www.mdpi.com/2078-1547/9/1/19|journal=Challenges|language=en|volume=9|issue=1|pages=19|doi=10.3390/challe9010019|pmc=|pmid=|access-date=Sep 1, 2018|quote=|via=}}</ref> [https://www.mdpi.com/2078-1547/9/1/19/pdf (Full text)]

==In popular culture==
A February 2016 comic strip referred to SEID and implied it is simply tiredness. ''See'': [[Blondie comic]]

==See also==
* [[Chronic fatigue syndrome]]
* [[ME/CFS]]
* [[Myalgic encephalomyelitis]]

*[[NIH Post-Infectious ME/CFS Study]] - [[SEID]] will be used in this study.<ref>{{Cite news | url=http://www.meaction.net/2016/02/09/positive-answers-to-initial-questions-re-nih-clinical-center-protocol/ | title = Positive Answers to Initial Questions re NIH Clinical Center Protocol - #MEAction | last = Alexander Miller | first = Courtney | date = 2016-02-09|work=#MEAction|access-date=2018-09-03|archive-url=|archive-date=|url-status=|language=en-US}}</ref>
*[[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome]]
*[[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome]]
*[[Severe and very severe ME]]

===Generally accepted criteria for diagnosing ME/CFS and ME ===
*[[Canadian Consensus Criteria]] (CCC)<ref name="Carruthers, 2003">{{Citation | last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers
| last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson
| last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas
| last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner
| last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested | last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry | last9 = Joshi | first9 = Pradip| authorlink9 = Pradip Joshi | last10 = Powles | first10 = AC Peter | authorlink10 = A C Peter Powles | last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey | last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols | journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | pages = 7-115 | date = 2003 | pmid = | doi = 10.1300/J092v11n01_02
| url = http://phoenixrising.me/wp-content/uploads/Canadian-definition.pdf }}</ref> A diagnosis of moderate and severe forms of [[ME/CFS]] are accurately made using this criterion. Adults can be diagnosed at 6 months while pediatric cases are diagnosed at three months.
*[[International Consensus Criteria]] (ICC)<ref>{{Cite journal | last =Carruthers | first = Bruce M. | author-link = Bruce Carruthers | last2 = van de Sande | first2 = Marjorie I. | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3=Kenny L. | author-link3 = Kenny De Meirleir | last4 = Klimas | first4 = Nancy G. | author-link4 = Nancy Klimas | last5 = Broderick | first5 = Gordon | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = Terry | authorlink6 = Terry Mitchell | last7 = Staines | first7 = Donald | author-link7 = Donald Staines | last8 = Powles | first8 = A.C. Peter | authorlink8 = A C Peter Powles | last9 = Speight | first9 = Nigel | authorlink9 = Nigel Speight | last10 = Vallings | first10 = Rosamund | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = Lucinda | authorlink11 = Lucinda Bateman | last12 = Baumgarten-Austrheim | first12 = Barbara | authorlink12 = Barbara Baumgarten-Austrheim | last13 = Bell | first13 = David | author-link13 = David Bell | last14 = Carlo-Stella | first14 = Nicoletta | author-link14 = Nicoletta Carlo-Stella | last15 = Chia | first15 = John | author-link15 = John Chia | last16 = Darragh | first16 = Austin | author-link16 = Austin Darragh | last17 = Jo | first17 = Daehyun | author-link17 = Daehyun Jo | last18 = Lewis | first18 = Donald | author-link18 = Donald Lewis | last19 = Light | first19 = Alan | author-link19 = Alan Light | last20 = Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21 = Mena | first21 = Ismael | author-link21 = Ismael Mena | last22 = Mikovits | first22 = Judy | author-link22 = Judy Mikovits | last23 = Miwa | first23 = Kunihisa | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = Modra | author-link24 = Modra Murovska | last25 = Pall | first25 = Martin | author-link25 = Martin Pall | last26 = Stevens | first26 = Staci | author-link26 = Staci Stevens | date = 2011-08-22 | title=Myalgic encephalomyelitis: International Consensus Criteria|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.2011.02428.x|journal=Journal of Internal Medicine|language=en|volume=270|issue=4|pages=327–338|doi=10.1111/j.1365-2796.2011.02428.x|issn=0954-6820|pmc=3427890|pmid=21777306|via=}}</ref> This criterion will accurately diagnose [[myalgic encephalomyelitis]] (ME). There is no requirement that the individual have symptoms for a specified period of time for diagnosis, as opposed to CCC, [[Fukuda criteria|Fukuda]], and [[Systemic Exertion Intolerance Disease|SEID]], which all require 6 months in adults.
*[[Systemic Exertion Intolerance Disease]] (IOM)<ref>{{Cite web|url=https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness | last =Clayton | first = Ellen Wright | date = 2015 | website = nap.edu|archive-url=|archive-date=|url-status=|access-date= | authorlink = Ellen Wright Clayton | last2 = Alegria | first2 = Margarita | authorlink2 = Margarita Alegría | authorlink3 = Lucinda Bateman | authorlink4 = Lily Chu | authorlink5 = Charles Cleeland | authorlink6 = Ronald Davis | authorlink7 = Betty Diamond | authorlink8 = Theodore Ganiats | authorlink9=Betsy Keller | last3 = Bateman | first3 = Lucinda | last4 = Chu | first4 = Lily | last5 = Cleeland | first5 = Charles | last6 = Davis | first6 = Ronald | last7 = Diamond | first7 = Betty | last8 = Ganiats | first8 = Theodore | last9 = Keller | first9 = Betsy | last10 = Klimas | first10 = Nancy | authorlink10=Nancy Klimas | last11 = Lerner | first11 = A Martin | authorlink11=Martin Lerner | last12 = Mulrow | first12 = Cynthia | authorlink12=Cynthia Mulrow | last13 = Natelson | first13 = Benjamin | authorlink13 = Benjamin Natelson | last14 = Rowe | first14 = Peter | authorlink14=Peter Rowe | last15 = Shelanski | first15 = Michael | authorlink15=Michael Shelanski}}</ref> ME/CFS (IOM) is accurately diagnosed when the [[Systemic Exertion Intolerance Disease#Diagnostic criteria|core symptoms]] are met. The [[Institute of Medicine report]] as a whole is a comprehensive review of the medical literature available at time of publication (2015). Adults can be diagnosed at [[lasts longer than 6 months|6 months]] while [[lasts longer than 3 months for children or adolescents|pediatric cases are diagnosed at three months]].

==Learn more==
*2015, [https://www.newscientist.com/article/dn26945-chronic-fatigue-syndrome-gets-yet-another-name/ Chronic fatigue syndrome gets yet another name]<ref>{{Cite news | url=https://www.newscientist.com/article/dn26945-chronic-fatigue-syndrome-gets-yet-another-name/ | title = Chronic fatigue syndrome gets yet another name | last =Coghlan | first = Andy | date = Feb 10, 2015 |work=New Scientist|access-date=2018-09-03|archive-url=|archive-date=|url-status=|language=en-US}}</ref>
*2015, [http://www.asianjournalofpsychiatry.com/article/S1876-2018(16)30248-9/abstract Systemic Exercise Intolerance Disease: What’s in a name?]<ref>{{Cite journal | last =Sen | first = Mahadev Singh | last2 = Sahoo | first2 = Swapnajeet | last3 = Aggarwal | first3 = Shivali | last4 = Singh | first4 = Shubh Mohan | date = 2016 | title=Systemic exercise intolerance disease: What’s in a name?|url=http://www.asianjournalofpsychiatry.com/article/S1876-2018(16)30248-9/abstract|journal=Asian Journal of Psychiatry|language=English|volume=22|pages=157–158|doi=10.1016/j.ajp.2016.06.003|issn=1876-2018|via=}}</ref>
*2018, [https://youtu.be/RC9TjgE_PlU?t=89 Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome]<ref>{{Cite web|url=https://youtu.be/RC9TjgE_PlU?t=89 | title = Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | last = Kaufman | first = David | date = Oct 16, 2018 | website = YouTube|publisher=Unrest Film|archive-url=|archive-date=|url-status=|access-date=|quote=Part of the Unrest Continuing Education module.|at=1:29}}</ref> (Notes the IOM report's diagnostic criteria.)

== References ==
<references>
<ref name="Chu, 2017">{{Citation | last1 = Chu | first1 = Lily | authorlink1 = Lily Chu
| last2 = Norris | first2 = Jane | authorlink2 = Jane Norris | last3 = Valencia | first3 = Ian J. | authorlink3 = | last4 = Montoya | first4 = Jose G. | authorlink4 = Jose Montoya | title = Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria | journal = Fatigue: Biomedicine, Health & Behavior | volume = 5 | issue = | page = | date = 2017
| doi = 10.1080/21641846.2017.1299079 }}</ref>
<ref name="Chu, Valencia, Montoya, 2017">{{Citation | last1 = Chu | first1 = Lily | authorlink1 = Lily Chu
| last2 = Valencia | first2 = Ian J. | authorlink2 = | last3 = Montoya | first3 = Jose G. | authorlink3 = Jose Montoya | title = Differences of opinion on systemic exercise intolerance disease are not ‘mistakes’: a rejoinder to Jason Sunnquist, Gleason and Fox | journal = Fatigue: Biomedicine, Health & Behavior | volume = | issue = | page = | date = 2017
| doi = 10.1080/21641846.2017.1362750 }}</ref>
<ref name="Jason, Sunn, 2015">{{Citation | last1 = Jason | first1 = L.A. | authorlink1 = Leonard Jason
| last2 = Sunnquist | first2 = M. | authorlink2 = Madison Sunnquist | last3 = Brown | first3 = A. | authorlink3 = | last4 = Newton | first4 = J.L. | authorlink4 = Julia Newton
| last5 = Strand | first5 = E.B. | authorlink5 = Elin Strand
| last6 = Vernon | first6 = S.D. | authorlink6 = Suzanne Vernon | title = Chronic fatigue syndrome versus systemic exertion intolerance disease | journal = Fatigue: Biomedicine, Health & Behavior | volume = 3 | issue = 3 | page = 127-141 | date = 2015 | pmid = | doi = 10.1080/21641846.2015.1051291 }}</ref>
<ref name="Jason, Sunnquist, Gleason, Fox, 2017">{{Citation | last1 = Jason | first1 = Leonard A. | authorlink1 = Leonard Jason
| last2 = Sunnquist | first2 = Madison | authorlink2 = Madison Sunnquist | last3 = Gleason | first3 = Kristen | authorlink3 = Kristen Gleason | last4 = Fox | first4 = Pamela| authorlink4 = Pamela Fox | title = Mistaken conclusions about systemic exercise intolerance disease being comparable to research case definitions of CFS: A rebuttal to Chu et al. | journal = Fatigue: Biomedicine, Health & Behavior | volume = | issue = | page = | date = 2017 | pmid = | doi = 10.1080/21641846.2017.1362780 }}</ref>
</references>

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

Systemic Exertion Intolerance Disease

2024-06-18T23:44:29Z

JaimeS:Just fixed a sentence

Systemic Exertion Intolerance Disease

2024-06-18T23:40:11Z

JaimeS:Big changes in tone and in some cases in content. (1) Several nervous system symptoms are in IOM criteria including central fatigue, orthostatic intolerance and cognitive impairment for starters. It is a spurious criticism to state that IOM criteria contain no symptoms of the nervous system. The article had quite a bit of prejudicial language and even naming the page SEID is no longer reasonable. We will make this a redirect.

The diagnostic criteria currently recommended by the [[Centers for Disease Control and Prevention|Centers for Disease Control]] is the '''[https://www.cdc.gov/me-cfs/hcp/diagnosis/iom-2015-diagnostic-criteria-1.html Institute of Medicine criteria (2015)]'''<ref name=":0">{{Cite web|url=https://www.cdc.gov/me-cfs/hcp/diagnosis/iom-2015-diagnostic-criteria-1.html|title=IOM 2015 Diagnostic Criteria|last=CDC|date=2024-05-22|website=Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|language=en-us|access-date=2024-06-18}}</ref> or sometimes the '''National Academy of Medicine criteria''', as the IOM is now called the NAM. Systemic Exertion Intolerance Disease, or SEID, was the name initially proposed by the committee; however it has not been adopted as a new name for ME/CFS by US organizations; CDC and NIH both refer to the disease as ME/CFS.<ref name=":0" /><ref name=":1">{{Cite web|url=https://www.nih.gov/mecfs/research|title=ME/CFS Research|date=2016-09-29|website=National Institutes of Health (NIH)|language=EN|access-date=2024-06-18}}</ref>

The IOM criteria was first proposed and published by an Institute of Medicine committee on [[Myalgic Encephalomyelitis]]/<wbr>[[Chronic Fatigue Syndrome]] (ME/CFS) in 2015, at the request of the CDC.<ref name="beyondMECFS" />

==<span id="CDC">Symptoms</span>==
===Core symptoms===
* [[Greatly lowered ability to do activities that were usual before the illness|Decrease in functional capacity]] with [[fatigue]] that lasts six months or longer. People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS:
**Can be severe.
**Is not a result of unusually difficult activity.
**Is not relieved by sleep or rest.
**Was not a problem before becoming ill (not life-long).
* [[post-exertional malaise]] (PEM)
* [[unrefreshing sleep]]; '''''and'''''
'''''either'''''
* [[Cognitive dysfunction|impaired memory or ability to concentrate]]
'''''or'''''
* [[orthostatic intolerance]] (symptoms that occur when standing upright)<ref name="CDC-criteria">{{Cite web|url=https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html | title = Symptoms {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|website=[[Centers for Disease Control and Prevention]] | date = Jan 27, 2021|access-date = 2022-01-03}}</ref><ref name="criteria">{{Cite book|chapter-url=https://www.nap.edu/read/19012/chapter/9|chapter=Proposed Diagnostic Criteria for ME/CFS | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | last =IOM (Institute of Medicine) | first = | authorlink = Institute of Medicine | last2 = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | first2 = | date = 2015 | page=210|publisher=National Academies Press|location=Washington, D.C.|isbn=978-0-309-31689-7|archive-url=|archive-date=|url-status=|access-date=2022-01-03}}</ref><ref name="CDC-IOM-SEIDcriteria">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html | title = IOM 2015 Diagnostic Criteria {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|website=[[Centers for Disease Control and Prevention]] | date = Jan 27, 2021|access-date = 2021-02-25}}</ref><ref name="algorithm">{{Cite web|url= https://www.nap.edu/resource/19012/MECFS_DiagnosticAlgorithm.jpg | title = Diagnostic Algorithm for ME/CFS | last =Institute of Medicine | first = | authorlink = Institute of Medicine | date = 2015 | website = nap.edu|archive-url=|archive-date=|url-status=|access-date=}}</ref>

===Other Common Symptoms===
Many people with ME/CFS also have other symptoms, such as:

*[[Pain not caused by injury]]: The type of pain, where it occurs, and how severe it is varies. The most common types of pain in ME/CFS are:
**[[Myalgia|Muscle pain]] and aches
**[[Arthralgia|Joint pain]] without swelling or redness
**[[Headache]]s, either new or worsening
Some people with ME/CFS may also have:
*[[Tender lymph nodes]] in their neck or armpits
*A [[sore throat]] that happens often
*[[Digestive problems|Digestive issues]], like [[irritable bowel syndrome]]
*[[Chill]]s and [[night sweats]]
*[[Allergy|Allergies]] and sensitivities to foods, odors, chemicals, light, or noise
*[[Paresis|Muscle weakness]]
*[[Dyspnea|Shortness of breath]]
*[[arrhythmia|Irregular heartbeat]]<ref name="CDC-criteria"/>

===Notes===
Orthostatic intolerance is also useful for a more severe presentation of the disease; symptom severity and other symptoms are outlined in the [[Institute of Medicine report]].<ref>{{Cite book | url =https://www.nap.edu/read/19012/chapter/5\ | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | last = | first = |publisher=National Academies of Medicine| year = 2015 |isbn=|editor-link=|location=|pages=141-162|language=en|chapter=5|quote=|editor-last2=|editor-link2=}}</ref>

Adults can be diagnosed at six months of illness and [[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|pediatric]] cases are diagnosed at three months.

==Diagnostic criteria for clinicians==
[[File:SEID algorithm.JPG|400px|thumb|right|Diagnostic Algorithm<ref name="algorithm" />]]
'''Diagnosis requires that the patient have the following three symptoms:'''

1. [[substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities|A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities]], that [[lasts longer than 6 months|persists for more than 6 months]] and is accompanied by [[Chronic fatigue|fatigue]], which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and

2. [[Post-exertional malaise]],* and

3. [[Unrefreshing sleep]]*

'''At least one of the two following manifestations is also required:'''

1. [[Cognitive impairment]]* or

2. [[Orthostatic intolerance]]

: * Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS (SEID) should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.<ref>{{Cite web|url= https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness | last = | first = | date = 2015 | website = nap.edu|archive-url=https://web.archive.org/web/20170615034241/https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf|archive-date=2017-06-15|url-status=|access-date=}}</ref><ref>{{Cite web|url=https://www.nap.edu/resource/19012/MECFS_ProposedDiagnosticCriteria.jpg | title = New diagnostic criteria {{!}} IOM 2015 Diagnostic Criteria {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|website=[[Centers for Disease Control and Prevention]] | date = Jan 27, 2021|access-date = 2022-01-03}}</ref>
:

==Development==
In 2014, the [[U.S. Department of Health and Human Services]] (HHS), the [[National Institutes of Health]] (NIH), the [[Agency for Healthcare Research and Quality]] (AHRQ), the [[Centers for Disease Control and Prevention]] (CDC), the [[Food and Drug Administration]] (FDA), and the [[Social Security Administration]] (SSA) asked the [[Institute of Medicine]] (IOM) to convene an expert committee to examine the evidence base for [[ME/CFS]]. In ''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness'', the committee proposes new diagnostic criteria that will facilitate timely diagnosis and care and enhance understanding among health care providers and the public. These criteria, based on expert analysis and the most up-to-date scientific literature, are streamlined for practical use in the clinical setting. The IOM committee also recommended that the name of the disease be changed—from ME/CFS to systemic exertion intolerance disease (SEID)—to more accurately capture the central characteristics of the illness.<ref name="beyondMECFS">{{Cite web|url= https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness | last = | first = | date = |website=nap.edu | page = 5|archive-url=https://web.archive.org/web/20170615034241/https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf|archive-date=2017-06-15|url-status=|access-date=}}</ref> However, this name was not adopted by government organizations and not embraced by advocacy organizations.<ref name=":0" /><ref name=":1" />

==Authors ==
The committee on the Diagnostic Criteria for [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]] (ME/CFS) consisted of [[Ellen Wright Clayton]], [[Margarita Alegría]], [[Lucinda Bateman]], [[Lily Chu]], [[Charles Cleeland]], [[Ronald Davis]], [[Betty Diamond]], [[Theodore Ganiats]], [[Betsy Keller]], [[Nancy Klimas]], [[A Martin Lerner]], [[Cynthia Mulrow]], [[Benjamin Natelson]], [[Peter Rowe]], and [[Michael Shelanski]].

== Criticism ==
The Institute of Medicine criteria was met with community criticisms, including the following:
* too few symptoms were required; in particular, nervous and immune system symptoms present for [[Canadian Consensus Criteria|CCC]] and [[International Consensus Criteria|ICC]] criteria were absent
* unclear descriptions of [[post-exertional malaise]]
* absence of [[pain]], which is listed as a "common symptom" but not part of the diagnostic criteria

[[Frank Twisk|Twisk]] (2017) stated that ME and CFS are different illnesses, with ME being a neuromuscular disease and CFS being a partially overlapping fatigue-based illness, and that it was not possible to replace both ME and CFS with a single diagnostic entity. Twisk also stated that SEID included some patients that did not meet either ME or CFS diagnostic criteria.<ref name="TwiskAccurate">{{Cite journal | last = Twisk | first = Frank N.M. | authorlink = Frank Twisk | date = Jun 27, 2017 | title = An Accurate Diagnosis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome requires strict Clinical Case definitions and Objective Test Methods|url=https://www.researchgate.net/profile/Frank_Twisk/publication/318463814_An_Accurate_Diagnosis_of_Myalgic_Encephalomyelitis_and_Chronic_Fatigue_Syndrome_requires_strict_Clinical_Case_definitions_and_Objective_Test_Methods/links/596ca586aca2728ca689c2fa/An-Accurate-Diagnosis-of-Myalgic-Encephalomyelitis-and-Chronic-Fatigue-Syndrome-requires-strict-Clinical-Case-definitions-and-Objective-Test-Methods.pdf|journal=Journal of Medical Diagnostic Methods|volume=6|issue=3|pages=|doi=10.4172/2168-9784.1000249|quote=|via=l}}</ref>

== Clinicians guide ==
The [https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf Report Guide for Clinicians] explains the core symptoms, additional symptoms, diagnostic criteria and more.

===Centers for Disease Control and Prevention (CDC) website===

: IOM criteria information has been incorporated into the CDC's ME/CFS website under the tab [https://www.cdc.gov/me-cfs/healthcare-providers/index.html Information for Healthcare Providers] under the "Resources" heading.<ref>{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/index.html | title = Information for Healthcare Providers {{!}} ME/CFS {{!}} CDC | date = 2018-07-10 | website = [[Centers for Disease Control and Prevention]]|language=en-us|access-date=2018-09-03}}</ref>

== The Institute of Medicine report ==

'''''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness'''''

===Read the report===
*[https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf Key facts] (two pages)
*[https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf Report brief] (four pages)
*[https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness Download full report] (282 pages)
*[https://www.nap.edu/resource/19012/MECFS_DiagnosticAlgorithm.jpg Diagnostic Algorithm Chart]
*[https://www.nap.edu/resource/19012/MECFS_ProposedDiagnosticCriteria.jpg Proposed Diagnostic Criteria Chart]
*[http://www.nap.edu/read/19012/chapter/1 Read the full 282 page report online]
**[http://www.nap.edu/read/19012/chapter/1 Front matter]
**[http://www.nap.edu/read/19012/chapter/2 Summary]
**[http://www.nap.edu/read/19012/chapter/3 1. Introduction]
**[http://www.nap.edu/read/19012/chapter/4 2. Background]
**[http://www.nap.edu/read/19012/chapter/5 3. Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters]
**[http://www.nap.edu/read/19012/chapter/6 4. Review of the Evidence on Major ME/CFS Symptoms and Manifestations]
**[http://www.nap.edu/read/19012/chapter/7 5. Review of the Evidence on Other ME/CFS Symptoms and Manifestations]
**[http://www.nap.edu/read/19012/chapter/8 6. Pediatric ME/CFS]
**[http://www.nap.edu/read/19012/chapter/9 7. Recommendations]
**[http://www.nap.edu/read/19012/chapter/10 8. Dissemination Strategy]
**[http://www.nap.edu/read/19012/chapter/11 Public Session Agendas]
**[http://www.nap.edu/read/19012/chapter/12 GRADE Grid Template]
**[http://www.nap.edu/read/19012/chapter/13 Disability in ME/CFS]
**[http://www.nap.edu/read/19012/chapter/14 Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms]
**[http://www.nap.edu/read/19012/chapter/15 Biographical Sketches of Committee Members, Consultants, and Staff]

*[https://www.youtube.com/watch?v=Uj1l-tmkRvw "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" Official video presentation]

== Videos ==
*[[Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education]]
:[[CDC]] Posted Video - Dr. [[John Iskander]] of CDC interviews Dr. [[Anthony Komaroff]] (Feb 17, 2016)

*[https://www.youtube.com/watch?v=ZW2Tcsp75a0 SMCI IOM Briefing in Washington, D.C. Full Coverage]<ref>{{Cite web|url=https://www.youtube.com/watch?v=ZW2Tcsp75a0 | title = SMCI IOM Briefing in Washington, D.C. Full Coverage | last = | first = | date = Mar 25, 2015 | website = YouTube|publisher=SolveCFS|archive-url=|archive-date=|url-status=|access-date=}}</ref>
:[[Carol Head]] of [[Solve ME/CFS]], Dr. [[Ellen Wright Clayton]] and [https://en.wikipedia.org/wiki/Morgan_Fairchild Morgan Fairchild]

*[https://www.youtube.com/watch?v=X4Tnt2d-5S8 New Clinical Definitions for ME/CFS - Dr. Lucinda Bateman]<ref>{{Cite web|url=https://www.youtube.com/watch?v=X4Tnt2d-5S8 | title = "New Clinical Definitions for ME/CFS" Dr. Lucinda Bateman | last =Bateman | first = Lucinda | date = Mar 8, 2015 | website = YouTube|publisher=Bateman Horne Center|archive-url=|archive-date=|url-status=|access-date=}}</ref>
:Dr. [[Lucinda Bateman]] of [[Bateman Horne Center]] discusses. (Mar 8, 2015)

==Notable studies==
* 2015, Chronic Fatigue Syndrome versus Systemic Exertion Intolerance Disease<ref name="Jason, Sunn, 2015" /> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4556426/pdf/nihms699325.pdf (Full text)]
* 2015, Unintended Consequences of not Specifying Exclusionary Illnesses for Systemic Exertion Intolerance Disease<ref name=":3">{{Cite journal | last= Jason | first = Leonard A. | author-link = Leonard Jason | last2 = Sunnquist | first2 = Madison | authorlink2 = Madison Sunnquist | last3 = Kot | first3=Bobby | author-link3 = Bobby Kot | last4 = Brown | first4 = Abigail | authorlink4 = Abigail Brown | date = Jun 23, 2015 | title = Unintended Consequences of not Specifying Exclusionary Illnesses for Systemic Exertion Intolerance Disease|url=https://www.mdpi.com/2075-4418/5/2/272|pmid=26854153|pmc=PMC4666441|journal=Diagnostics|language=en|volume=5|issue=2|pages=272–286|doi=10.3390/diagnostics5020272|quote=|via=}}</ref> [https://www.mdpi.com/2075-4418/5/2/272/htm (Full text)]
* 2016, Replacing Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with Systemic Exercise Intolerance Disease Is Not the Way forward<ref name=":4">{{Cite journal | last = Twisk | first = Frank N.M. | authorlink = Frank Twisk|pmid=26861399|pmc=PMC4808825 | date = Feb 6, 2016 | title = Replacing Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with Systemic Exercise Intolerance Disease Is Not the Way forward | url =https://www.mdpi.com/2075-4418/6/1/10|journal=Diagnostics|language=en|volume=6|issue=1|pages=10|doi=10.3390/diagnostics6010010|quote=|via=}}</ref> [https://www.mdpi.com/2075-4418/6/1/10 (Full text)]
* 2016, Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility<ref name="SEIDAsprusten">{{Cite journal | last = Asprusten | first = Tarjei Tørre | authorlink = Tarjei Asprusten | last2 = Sulheim | first2 = Dag | authorlink2 = Dag Sulheim | last3 = Fagermoen | first3=Even | author-link3 = Even Fagermoen | last4 = Winger | first4 = Anette | authorlink4 = Anette Winger | last5 = Skovlund | first5 = Eva | authorlink5 = Eva Skovlund | last6 = Wyller | first6 = Vegard Bruun | authorlink6 = Vegard Bruun Wyller|pmc=PMC5887832 | date =2018-03-16 | title = Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5887832/|journal=BMJ Paediatrics Open|volume=2|issue=1|pages=|doi=10.1136/bmjpo-2017-000233|issn=2399-9772|pmid=29637195|access-date=|quote=|via=}}</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5887832/ (Full text)]
* 2017, Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria<ref name="Chu, 2017" /> [http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1299079?journalCode=rftg20& (Full text)]

==Letters and commentary==
*2017, An Accurate Diagnosis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome requires strict Clinical Case definitions and Objective Test Methods<ref name="TwiskAccurate" /> [https://www.researchgate.net/profile/Frank_Twisk/publication/318463814_An_Accurate_Diagnosis_of_Myalgic_Encephalomyelitis_and_Chronic_Fatigue_Syndrome_requires_strict_Clinical_Case_definitions_and_Objective_Test_Methods/links/596ca586aca2728ca689c2fa/An-Accurate-Diagnosis-of-Myalgic-Encephalomyelitis-and-Chronic-Fatigue-Syndrome-requires-strict-Clinical-Case-definitions-and-Objective-Test-Methods.pdf (Full text)]
*2017, [http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1362750 Article commentary - Differences of opinion on systemic exercise intolerance disease are not ‘mistakes’: a rejoinder to Jason Sunnquist, Gleason and Fox]<ref name="Chu, Valencia, Montoya, 2017" />
*2017, [http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1362780 Article commentary - Mistaken conclusions about systemic exercise intolerance disease being comparable to research case definitions of CFS: A rebuttal to Chu et al.]<ref name="Jason, Sunnquist, Gleason, Fox, 2017" />
*2018, Myalgic Encephalomyelitis, chronic fatigue syndrome, and Systemic Exertion Intolerance Disease: Three distinct clinical entities<ref name="Twisk3DistinctEntities">{{Cite journal | last = Twisk | first = Frank N.M. | authorlink = Frank Twisk | date = Jun 2018 | title = Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Systemic Exertion Intolerance Disease: Three Distinct Clinical Entities|url=https://www.mdpi.com/2078-1547/9/1/19|journal=Challenges|language=en|volume=9|issue=1|pages=19|doi=10.3390/challe9010019|pmc=|pmid=|access-date=Sep 1, 2018|quote=|via=}}</ref> [https://www.mdpi.com/2078-1547/9/1/19/pdf (Full text)]

==In popular culture==
A February 2016 comic strip referred to SEID and implied it is simply tiredness. ''See'': [[Blondie comic]]

==See also==
* [[Chronic fatigue syndrome]]
* [[ME/CFS]]
* [[Myalgic encephalomyelitis]]

*[[NIH Post-Infectious ME/CFS Study]] - [[SEID]] will be used in this study.<ref>{{Cite news | url=http://www.meaction.net/2016/02/09/positive-answers-to-initial-questions-re-nih-clinical-center-protocol/ | title = Positive Answers to Initial Questions re NIH Clinical Center Protocol - #MEAction | last = Alexander Miller | first = Courtney | date = 2016-02-09|work=#MEAction|access-date=2018-09-03|archive-url=|archive-date=|url-status=|language=en-US}}</ref>
*[[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome]]
*[[Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome]]
*[[Severe and very severe ME]]

===Generally accepted criteria for diagnosing ME/CFS and ME ===
*[[Canadian Consensus Criteria]] (CCC)<ref name="Carruthers, 2003">{{Citation | last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers
| last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain | last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir | last4 = Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson
| last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas
| last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner
| last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested | last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry | last9 = Joshi | first9 = Pradip| authorlink9 = Pradip Joshi | last10 = Powles | first10 = AC Peter | authorlink10 = A C Peter Powles | last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey | last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols | journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | pages = 7-115 | date = 2003 | pmid = | doi = 10.1300/J092v11n01_02
| url = http://phoenixrising.me/wp-content/uploads/Canadian-definition.pdf }}</ref> A diagnosis of moderate and severe forms of [[ME/CFS]] are accurately made using this criterion. Adults can be diagnosed at 6 months while pediatric cases are diagnosed at three months.
*[[International Consensus Criteria]] (ICC)<ref>{{Cite journal | last =Carruthers | first = Bruce M. | author-link = Bruce Carruthers | last2 = van de Sande | first2 = Marjorie I. | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3=Kenny L. | author-link3 = Kenny De Meirleir | last4 = Klimas | first4 = Nancy G. | author-link4 = Nancy Klimas | last5 = Broderick | first5 = Gordon | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = Terry | authorlink6 = Terry Mitchell | last7 = Staines | first7 = Donald | author-link7 = Donald Staines | last8 = Powles | first8 = A.C. Peter | authorlink8 = A C Peter Powles | last9 = Speight | first9 = Nigel | authorlink9 = Nigel Speight | last10 = Vallings | first10 = Rosamund | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = Lucinda | authorlink11 = Lucinda Bateman | last12 = Baumgarten-Austrheim | first12 = Barbara | authorlink12 = Barbara Baumgarten-Austrheim | last13 = Bell | first13 = David | author-link13 = David Bell | last14 = Carlo-Stella | first14 = Nicoletta | author-link14 = Nicoletta Carlo-Stella | last15 = Chia | first15 = John | author-link15 = John Chia | last16 = Darragh | first16 = Austin | author-link16 = Austin Darragh | last17 = Jo | first17 = Daehyun | author-link17 = Daehyun Jo | last18 = Lewis | first18 = Donald | author-link18 = Donald Lewis | last19 = Light | first19 = Alan | author-link19 = Alan Light | last20 = Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21 = Mena | first21 = Ismael | author-link21 = Ismael Mena | last22 = Mikovits | first22 = Judy | author-link22 = Judy Mikovits | last23 = Miwa | first23 = Kunihisa | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = Modra | author-link24 = Modra Murovska | last25 = Pall | first25 = Martin | author-link25 = Martin Pall | last26 = Stevens | first26 = Staci | author-link26 = Staci Stevens | date = 2011-08-22 | title=Myalgic encephalomyelitis: International Consensus Criteria|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2796.2011.02428.x|journal=Journal of Internal Medicine|language=en|volume=270|issue=4|pages=327–338|doi=10.1111/j.1365-2796.2011.02428.x|issn=0954-6820|pmc=3427890|pmid=21777306|via=}}</ref> This criterion will accurately diagnose [[myalgic encephalomyelitis]] (ME). There is no requirement that the individual have symptoms for a specified period of time for diagnosis, as opposed to CCC, [[Fukuda criteria|Fukuda]], and [[Systemic Exertion Intolerance Disease|SEID]], which all require 6 months in adults.
*[[Systemic Exertion Intolerance Disease]] (IOM)<ref>{{Cite web|url=https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness | last =Clayton | first = Ellen Wright | date = 2015 | website = nap.edu|archive-url=|archive-date=|url-status=|access-date= | authorlink = Ellen Wright Clayton | last2 = Alegria | first2 = Margarita | authorlink2 = Margarita Alegría | authorlink3 = Lucinda Bateman | authorlink4 = Lily Chu | authorlink5 = Charles Cleeland | authorlink6 = Ronald Davis | authorlink7 = Betty Diamond | authorlink8 = Theodore Ganiats | authorlink9=Betsy Keller | last3 = Bateman | first3 = Lucinda | last4 = Chu | first4 = Lily | last5 = Cleeland | first5 = Charles | last6 = Davis | first6 = Ronald | last7 = Diamond | first7 = Betty | last8 = Ganiats | first8 = Theodore | last9 = Keller | first9 = Betsy | last10 = Klimas | first10 = Nancy | authorlink10=Nancy Klimas | last11 = Lerner | first11 = A Martin | authorlink11=Martin Lerner | last12 = Mulrow | first12 = Cynthia | authorlink12=Cynthia Mulrow | last13 = Natelson | first13 = Benjamin | authorlink13 = Benjamin Natelson | last14 = Rowe | first14 = Peter | authorlink14=Peter Rowe | last15 = Shelanski | first15 = Michael | authorlink15=Michael Shelanski}}</ref> ME/CFS (IOM) is accurately diagnosed when the [[Systemic Exertion Intolerance Disease#Diagnostic criteria|core symptoms]] are met. The [[Institute of Medicine report]] as a whole is a comprehensive review of the medical literature available at time of publication (2015). Adults can be diagnosed at [[lasts longer than 6 months|6 months]] while [[lasts longer than 3 months for children or adolescents|pediatric cases are diagnosed at three months]].

==Learn more==
*2015, [https://www.newscientist.com/article/dn26945-chronic-fatigue-syndrome-gets-yet-another-name/ Chronic fatigue syndrome gets yet another name]<ref>{{Cite news | url=https://www.newscientist.com/article/dn26945-chronic-fatigue-syndrome-gets-yet-another-name/ | title = Chronic fatigue syndrome gets yet another name | last =Coghlan | first = Andy | date = Feb 10, 2015 |work=New Scientist|access-date=2018-09-03|archive-url=|archive-date=|url-status=|language=en-US}}</ref>
*2015, [http://www.asianjournalofpsychiatry.com/article/S1876-2018(16)30248-9/abstract Systemic Exercise Intolerance Disease: What’s in a name?]<ref>{{Cite journal | last =Sen | first = Mahadev Singh | last2 = Sahoo | first2 = Swapnajeet | last3 = Aggarwal | first3 = Shivali | last4 = Singh | first4 = Shubh Mohan | date = 2016 | title=Systemic exercise intolerance disease: What’s in a name?|url=http://www.asianjournalofpsychiatry.com/article/S1876-2018(16)30248-9/abstract|journal=Asian Journal of Psychiatry|language=English|volume=22|pages=157–158|doi=10.1016/j.ajp.2016.06.003|issn=1876-2018|via=}}</ref>
*2018, [https://youtu.be/RC9TjgE_PlU?t=89 Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome]<ref>{{Cite web|url=https://youtu.be/RC9TjgE_PlU?t=89 | title = Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | last = Kaufman | first = David | date = Oct 16, 2018 | website = YouTube|publisher=Unrest Film|archive-url=|archive-date=|url-status=|access-date=|quote=Part of the Unrest Continuing Education module.|at=1:29}}</ref> (Notes the IOM report's diagnostic criteria.)

== References ==
<references>
<ref name="Chu, 2017">{{Citation | last1 = Chu | first1 = Lily | authorlink1 = Lily Chu
| last2 = Norris | first2 = Jane | authorlink2 = Jane Norris | last3 = Valencia | first3 = Ian J. | authorlink3 = | last4 = Montoya | first4 = Jose G. | authorlink4 = Jose Montoya | title = Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria | journal = Fatigue: Biomedicine, Health & Behavior | volume = 5 | issue = | page = | date = 2017
| doi = 10.1080/21641846.2017.1299079 }}</ref>
<ref name="Chu, Valencia, Montoya, 2017">{{Citation | last1 = Chu | first1 = Lily | authorlink1 = Lily Chu
| last2 = Valencia | first2 = Ian J. | authorlink2 = | last3 = Montoya | first3 = Jose G. | authorlink3 = Jose Montoya | title = Differences of opinion on systemic exercise intolerance disease are not ‘mistakes’: a rejoinder to Jason Sunnquist, Gleason and Fox | journal = Fatigue: Biomedicine, Health & Behavior | volume = | issue = | page = | date = 2017
| doi = 10.1080/21641846.2017.1362750 }}</ref>
<ref name="Jason, Sunn, 2015">{{Citation | last1 = Jason | first1 = L.A. | authorlink1 = Leonard Jason
| last2 = Sunnquist | first2 = M. | authorlink2 = Madison Sunnquist | last3 = Brown | first3 = A. | authorlink3 = | last4 = Newton | first4 = J.L. | authorlink4 = Julia Newton
| last5 = Strand | first5 = E.B. | authorlink5 = Elin Strand
| last6 = Vernon | first6 = S.D. | authorlink6 = Suzanne Vernon | title = Chronic fatigue syndrome versus systemic exertion intolerance disease | journal = Fatigue: Biomedicine, Health & Behavior | volume = 3 | issue = 3 | page = 127-141 | date = 2015 | pmid = | doi = 10.1080/21641846.2015.1051291 }}</ref>
<ref name="Jason, Sunnquist, Gleason, Fox, 2017">{{Citation | last1 = Jason | first1 = Leonard A. | authorlink1 = Leonard Jason
| last2 = Sunnquist | first2 = Madison | authorlink2 = Madison Sunnquist | last3 = Gleason | first3 = Kristen | authorlink3 = Kristen Gleason | last4 = Fox | first4 = Pamela| authorlink4 = Pamela Fox | title = Mistaken conclusions about systemic exercise intolerance disease being comparable to research case definitions of CFS: A rebuttal to Chu et al. | journal = Fatigue: Biomedicine, Health & Behavior | volume = | issue = | page = | date = 2017 | pmid = | doi = 10.1080/21641846.2017.1362780 }}</ref>
</references>

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

Unrefreshing sleep

2024-06-18T23:13:08Z

JaimeS:SEID--> IOM or NAM criteria; removed some subtly prejudicial language

'''Unrefreshing sleep''' or '''nonrestorative sleep''' is a light sleep that, even after a full night, doesn't leave you rested.

People with [[ME/CFS]] will often awaken feeling exhausted as if they have not slept.<ref>{{Cite web|url=https://ammes.org/symptoms-of-mecfs/ | title = Symptoms of ME/CFS – American ME and CFS Society|language=en-US|access-date=2019-09-26}}</ref><ref>{{Cite web|url=https://www.health.harvard.edu/a_to_z/chronic-fatigue-syndrome-a-to-z | title = Chronic Fatigue Syndrome | last =Publishing | first = Harvard Health | website = Harvard Health|access-date=2019-09-26}}</ref><ref>{{Cite book | url =https://www.ncbi.nlm.nih.gov/books/NBK284902/ | title = Review of the Evidence on Major ME/CFS Symptoms and Manifestations | last =Syndrome | first = Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue | last2 = Populations | first2=Board on the Health of Select | last3 = Medicine | first3 = Institute of | date = 2015-02-10|publisher=National Academies Press (US)|language=en}}</ref>

It is a core symptom in the diagnosis of [[SEID]] (ME/CFS).<ref name=":0">{{Cite web|url=http://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness | last = | first = | date = 2015 | website = National Academies|archive-url=|archive-date=|url-status=|access-date=}}</ref> [[Fibromyalgia]] patients also experience unrefreshing sleep.<ref>{{Cite web|url=https://www.webmd.com/fibromyalgia/guide/fibromyalgia-symptoms | title = Fibromyalgia Symptoms|website=WebMD|language=en|access-date=2019-10-03}}</ref><ref>{{Cite web|url=https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780 | title = Fibromyalgia - Symptoms and causes|website=Mayo Clinic|language=en|access-date=2019-10-03}}</ref>

==Prevalence==

The "Report Guide for Clinicians" by the [[IOM]] and a part of the [[Institute of Medicine report]] states: "Despite the absence of a specific objective alteration in sleep architecture, the data are strong that the complaint of unrefreshing sleep is universal among patients with ME/CFS (IOM criteria) when questions about sleep specifically address this issue. While polysomnography is not required to diagnose ME/CFS, its use to screen for treatable sleep disorders when indicated is appropriate. Diagnosis of a primary sleep disorder does not rule out a diagnosis of ME/CFS."<ref>[http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf Beyond Myalgic Enceplhalomyelitis/Chronic Fatigue Syndrome - Defining an Illness - Guide for Clinicians]</ref>

==Symptom recognition==
*In the [[Fukuda criteria]], the symptom of unrefreshing sleep 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>
*In the [[Systemic Exertion Intolerance Disease|IOM]] criteria, it is a mandatory core symptom.<ref name=":0" />

==Notable studies==
* 1997, [https://www.ncbi.nlm.nih.gov/pubmed/9170115 Sleep anomalies in the chronic fatigue syndrome. A comorbidity study.]<ref>{{Cite journal | last = Fischler | first=B. | last2 = Le Bon | first2=O. | last3 = Hoffmann | first3=G. | last4 = Cluydts | first4=R. | last5 = Kaufman | first5 = L. | last6 = De Meirleir | first6 = K. | date = 1997 | title = Sleep anomalies in the chronic fatigue syndrome. A comorbidity study|url=https://www.ncbi.nlm.nih.gov/pubmed/9170115|journal=Neuropsychobiology|volume=35|issue=3|pages=115–122|doi=10.1159/000119331|issn=0302-282X|pmid=9170115}}</ref>

*2016, [http://repository.urosario.edu.co/handle/10336/12243 Prevalencia de síntomas de fatiga crónica / encefalomielitis miálgica (SFC/EM) y su relación con factores ocupacionales en trabajadores en una empresa de vigilancia en Bogotá, Colombia]<ref>{{Cite web|url=http://repository.urosario.edu.co/handle/10336/12243 | title = Prevalencia de síntomas de fatiga crónica / encefalomielitis miálgica (SFC/EM) y su relación con factores ocupacionales en trabajadores en una empresa de vigilancia en Bogotá, Colombia, 2016 | last =Rincón | first = Ximena | last2 = Kerr | first2=Jonathan | date = 2016 | website = repository.urosario.edu.co|archive-url=|archive-date=|url-status=|access-date = | last3 = Herrera | first3 = Diego | last4 = Ibáñez-Pinilla | first4 = Milciades}}</ref> Note: The only entry criteria noted were [[fatigue]] and [[muscle pain]] which seem to be the broadest and loose of symptom definitions [[Reeves criteria]] and [[Oxford criteria]].

==Possible causes==

==Potential treatments==

==See also==
* [[Sleep dysfunction]]
* [[Insomnia]]

==Learn more==
*2016, [http://www.occupycfs.com/2016/04/22/how-i-sleep-at-night/ How I sleep at night]
*2019, [https://www.verywellhealth.com/unrefreshing-sleep-in-chronic-fatigue-syndrome-716108 Unrefreshing Sleep in Chronic Fatigue Syndrome]<ref name=":1">{{Cite web|url=https://www.me-pedia.org/wiki/Unrefreshing_sleep | title = Unrefreshing Sleep in Chronic Fatigue Syndrome | last = | first = | authorlink = Adrienne Dellwo | date = Jan 10, 2019 | website = me-pedia.org|language=en|archive-url=|archive-date=|url-status=|access-date=2019-04-29}}</ref>

== References ==
{{Reflist}}

[[Category:Signs and symptoms]]
[[Category:Sleep signs and symptoms]]

Gupta program

2024-06-04T21:11:59Z

JaimeS:I made serious edits. First, there was a lot of prejudicial language, a lot of information that was neither here nor there (like that ME Association did not consider the amygdala an important area of concern). There was a section "clinician-reported harms" that a summary from the ME Association (who are not clinicians). This was followed by a summary of patient-reported testimonials of individual dislike, which invited patient-reported glowing testimonials which prompted this series of edits.

The '''Gupta Program''' or '''Gupta Programme''' or '''Amydala and Insula Retraining''' describes itself as "[[brain training|brain retraining]]" techniques designed "to alter [[amygdala]] and [[insula]] activity" in order to treat or cure [[chronic illness|chronic diseases]] including [[chronic fatigue syndrome]] and [[fibromyalgia]].<ref name="Gupta2002" /><ref name="MAIR2020" /><ref name="ASA2018">{{Cite web | url=https://www.asa.org.uk/rulings/harley-street-solutions-ltd-a17-400324.html | title = Harley Street Solutions Ltd | last = Advertising Standards Authority {{!}} Committee of Advertising Practice | authorlink = Advertising Standards Authority | first = |website=Advertising Standards Authority | date = April 11, 2018|access-date=2020-08-29}}</ref> The Gupta program is based on the [[amygdala hypothesis]] of [[chronic fatigue syndrome]], which is not [[peer review]]ed, is unproven, and has not been a focus of research.<ref name="Gupta2002" /><ref name="MAIR2020" />

In 2018, the Gupta Program was found to be making unproven advertising claims including wrongly claiming that it can be used to treat [[fibromyalgia]], [[Electrohypersensitivity|electrical sensitivities]], and [[ME/CFS]] by the Advertising Standards Authority.<ref name="ASA2018" /> The UK's [[ME Association]] charity does not accept adverts for the Gupta Program.<ref name="MEA-ads">{{Cite web | last = ME Association | first = | authorlink = ME Association | date = Sep 19, 2012 | website = [[ME Association]]|archive-url=|archive-date=|url-status=| url = https://meassociation.org.uk/2012/09/new-advertising-feature-started-on-mea-website-19-september-2012/ | title = New advertising feature started on MEA website {{!}} 19 September 2012|access-date=2022-06-03|quote=We respectfully decline any contact from practitioners offering the Lightning Process, Gupta Programme, Mickel Therapy, or any similar training courses.}}</ref><ref name="MEA-CAM">{{Cite web | date = May 30, 2015 | website = [[ME Association]]|archive-url=|archive-date=|url-status=| url = https://meassociation.org.uk/wp-content/uploads/Alt-comp-approaches.pdf | title = Alternative and complementary approaches to management | first = Charles | last = Shepherd | authorlink=Charles Shepherd|access-date=2022-06-03|quote=Publicity for these approaches often includes glowing reports from people who have gained benefit – some of whom then go on to become therapists. However, none of these approaches has so far been subjected to proper clinical trials to assess their efficacy and safety. The MEA does not therefore endorse or recommend any of these treatments.}}</ref>

===Alternative names===
Other names used for the Gupta Program include:
* Amygdala Retraining Techniques (ART)
* Amygdala Retraining Program (ARP)<ref name="Conf2016">{{Cite web | url=https://growthzonesitesprod.azureedge.net/wp-content/uploads/sites/1869/2020/10/IACFSME-2016-Program.pdf | publisher=IACFS/ME | title = 12th Biennial Conference Syllabus | date = October 2016}}</ref>
* Amygdala and Insula Retraining (AIR)
* Gupta Amygdala Retraining<ref name="ASA2018" />
* Gupta Programme<ref name="ASA2018" />
The randomized controlled trial of "Mindfulness-Based Program Plus Amygdala and Insula Retraining" (MAIR) involved using part of the Gupta Program but delivered face to face by a qualified psychologist and includes additional [[mindfulness]] for stress, plus "treatment as usual" (for example medication), but the trial did not show evidence of the effectiveness for the Gupta Program.<ref name="MAIR2020" />

== Theory ==
The hypothesis behind the Gupta Program is that amygdala overactivation and [[insula]] involvement lead to symptoms; that ME/CFS and other diseases are caused by problematic or dysfunctional patterns or activity in the [[amygdala]] and [[insula]] parts of the brain.<ref name="CDC-causes" /><ref name="MAIR2020" /><ref name="website">{{Cite web | last = Gupta | first = Ashok | authorlink = Ashok Gupta | date = | title = Gupta Program {{!}} The Secret of Amygdala Retraining | url = https://www.guptaprogram.com/|website=The Gupta Program|access-date=2022-06-04|quote=}}</ref><ref name="Medical3Pager">{{Cite web | last = Gupta | first = Ashok | authorlink = Ashok Gupta | date = Feb 2021 | title = Medical Pager Final Version | url =https://guptaprog.b-cdn.net/wp-content/uploads/2021/02/Gupta-Program-Medical-Pager-Final-Version.pdf | website=The Gupta Program|access-date=2022-06-04|quote=}}</ref>
=== '''Content of the Gupta Program''' ===
The Gupta Program is a brain retraining, mindfulness, and holistic health program accessible via website and a mobile app marketed to people with ME/CFS, Fibromyalgia, and Multiple Chemical Sensitivities (MCS). It contains 15 video-based modules.

The program includes breathing exercises, meditations, mindset insights, light yoga and stretching, somatic experiencing exercises, holistic health advice, laughter workshops, and brain retraining exercises including their seven-step brain retraining technique. The Gupta Program also provides shorter options for brain retraining.

The Gupta Program initially mails participants a floor chart and a workbook. There is a dedicated section on how to deal with "dips" and setbacks. Ashok Gupta recommends "doing your best and leaving the rest" if you are experiencing a "dip."

The program also gives advice on pacing, diet, sleep, posits that being in nature is essential to healing the body. The Gupta Program encourages members to not wait until they are in perfect health to engage in activities they love. The Gupta Program encourages pacing within one's energy level and to not go beyond one's energy boundaries.<ref>{{Cite web|url=https://guptaprogram.com/how-to-pace/|title=ME/CFS And Fibro {{!}} The Gupta Program|last=Ashok|website=https://guptaprogram.com/|language=en-US|access-date=2024-06-03}}</ref> However, some have reported that the way they applied the Gupta Program resulted in them experiencing a "crash" and/or setback.

There are two modules on "parts" work. The Gupta Program posits that there are sub-personalities that are trying to protect us or stimulate the nervous system with stress, including the "achiever," "perfectionist," or the "protector", and encourages participants to imagine them as beings, shapes, or colors. He discusses why we develop these "parts," and how we one work with them as if they were friends and even find value in what they can teach.

The Gupta Program features meditation, acceptance, pacing, diet, mindfulness, and sleep hygiene as well. The program points participants to other possible areas to explore such as trauma healing.

==Evidence ==
Evidence is largely limited to patient self-reports. The UK's [[Advertising Standards Authority]] upheld a complaint in 2018 claiming that the Gupta Program was falsely advertised as a treatment for [[chronic fatigue syndrome]]/[[myalgic encephalomyelitis|ME]], [[fibromyalgia]] and electrical sensitivities due to the lack of scientific evidence supporting this claim.<ref name="ASA2018" />
===Amygdala and insula activity hypothesis ===
There is no scientific evidence to support the Gupta Program claims that chronic diseases including ME/CFS and Fibromyalgia are caused by problematic or dysfunctional patterns or activity in the [[amygdala]] and [[insula]] parts of the brain.<ref name="CDC-causes">{{Cite web | url=https://www.cdc.gov/me-cfs/about/possible-causes.html | title = Possible Causes {{!}} Information for Healthcare Providers {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS | last = Centers for Disease Control and Prevention | first = | authorlink = Centers for Disease Control and Prevention | date = 2018 | website = CDC|language=en-us|archive-url=|archive-date=|url-status=|access-date=2022-06-01}}</ref>

===Amygdala and insula activity changes ===
There is no evidence that the Gupta Program alters amygdala or insula activity.

==Notable studies ==
*2022, Amygdala and Insula Retraining (AIR) Significantly Reduces Fatigue and Increases Energy in People with Long COVID - [https://www.hindawi.com/journals/ecam/2023/7068326/ (Full text)]
*2020, Mindfulness-Based Program Plus Amygdala and Insula Retraining (MAIR) for the Treatment of Women with Fibro<ref name="MAIR2020">{{Cite journal | title = Mindfulness-Based Program Plus Amygdala and Insula Retraining (MAIR) for the Treatment of Women with Fibromyalgia: A Pilot Randomized Controlled Trial | date = Oct 2020| url = https://www.mdpi.com/2077-0383/9/10/3246/htm|journal=Journal of Clinical Medicine|volume=9|issue=10 | pages = 3246 | last = Sanabria-Mazo | first = Juan P. | authorlink = | last2 = Montero-Marin | first2 = Jesus | authorlink2 = | last3 = Feliu-Soler | first3 = Albert | authorlink3 = | last4 = Gasión | first4 = Virginia | authorlink4 = | last5 = Navarro-Gil | first5 = Mayte | authorlink5 = | last6 = Morillo-Sarto | first6 = Héctor | authorlink6 = | last7 = Colomer-Carbonell | first7 = Ariadna | last8 = Borràs | first8 = Xavier | last9 = Tops | first9 = Mattie | last10 = Luciano | first10 = Juan V. | last11 = García-Campayo | first11 = Javier|language=en|doi=10.3390/jcm9103246|pmc=PMC7599726|pmid=33050630|access-date=|issn=2077-0383|quote=|via=}}</ref> - [https://www.mdpi.com/2077-0383/9/10/3246/htm (Full text)]
::'''Conflict of interest not declared:''' Author and investigator Virginia Gasión (Virginia Gasión Royo) had been a Gupta coach since 2014, which means she earns from people doing the Gupta Program, giving a direct final financial conflict of interest.<ref name="Guptacoaches">{{Cite web | url=https://www.guptaprogram.com/coaches | title = Our Professional Team of Coaches | last = | first = | authorlink = | date = | website = Gupta Program|language=en-US|archive-url=|archive-date=|url-status=|access-date=2022-06-03}}</ref>
*2012, A mind-body technique for symptoms related to fibromyalgia and chronic fatigue<ref name="Toussaint2012">{{Cite journal | title = A mind-body technique for symptoms related to fibromyalgia and chronic fatigue | date = Mar 2012| url = https://pubmed.ncbi.nlm.nih.gov/22385563/|journal=Explore (New York, N.Y.)|volume=8|issue=2 | pages = 92–98 | last = Toussaint | first = Loren L. | authorlink = Loren Toussaint | last2 = Whipple | first2 = Mary O. | authorlink2 = | last3 = Abboud | first3 = Lana L. | authorlink3 = | last4 = Vincent | first4 = Ann | authorlink4 = Ann Vincent | last5 = Wahner-Roedler | first5 = Dietlind L.|doi=10.1016/j.explore.2011.12.003|pmc=|pmid=22385563|access-date=|issn=1878-7541|quote=|via=}}</ref> - [https://www.researchgate.net/profile/Loren-Toussaint/publication/229324365_A_Mind-Body_Technique_for_Symptoms_Related_to_Fibromyalgia_and_Chronic_Fatigue/links/59e3bb3f458515393d5b935f/A-Mind-Body-Technique-for-Symptoms-Related-to-Fibromyalgia-and-Chronic-Fatigue.pdf (Full text)]
::The [[Advertising Standards Authority]] rejected this as evidence of effectiveness of the Gupta Program.<ref name="ASA2018" />
::This was open to patients with [[chronic fatigue syndrome]] but none completed it. Of the 32 patients randomly assigned to Amygdala and Insula Retraining (AIR) plus standard care, 19% (6 patients) dropped out before starting, 19% (6 patients) did not complete baseline measures but did AIR, 41% (13 patients) did AIR but not the follow-up assessments, 22% (7 patients) did AIR and completed follow-up assessments. Twice as many patients completed standard care, including both assessments - 56% (14 out of 25).<ref name="Toussaint2012" />

===Articles not peer reviewed or from non-academic journals===
*2010, Can amygdala retraining techniques improve the wellbeing of patients with chronic fatigue syndrome? A clinical audit of subjective outcomes in a small sample<ref name="GuptaAudit">{{Cite journal |archive-url = http://web.archive.org/web/20111119095503/http://www.guptaprogramme.com/Amygdala_Retraining_JHH_Sept_2010.pdf |archive-date=2011-11-11 | url = https://www.guptaprogram.com/wp-content/uploads/2019/02/amygdala-retraining-jhh-sept-2010.pdf | last = Gupta | first = A | authorlink = Ashok Gupta | date =September 2010 | title = Can amygdala retraining techniques improve the wellbeing of patients with chronic fatigue syndrome? A clinical audit of subjective outcomes in a small sample. |journal = Journal of Holistic Healthcare |volume= 7 |issue =2 | pages = 12-15 |access-date=2022-06-02}}</ref> - [http://web.archive.org/web/20111119095503/http://www.guptaprogramme.com/Amygdala_Retraining_JHH_Sept_2010.pdf (Full text)]
::The Advertising Standards Authority rejected this as evidence of effectiveness of the Gupta Program.<ref name="ASA2018" />
::This was not published in an academic journal<ref name="JHH">{{Cite web | url=https://bhma.org/journal-information-for-contributors/ | title = Journal - information for contributors | last = | first = | authorlink = | date = | website = British Holistic Medical Association|archive-url=|archive-date=|url-status=|access-date=2022-06-03}}</ref>
*2002, Unconscious amygdalar fear conditioning in a subset of chronic fatigue syndrome patients<ref name="Gupta2002">{{Cite journal | last = Gupta | first = Ashok | authorlink = Ashok Gupta | date = 2002 | title = Unconscious amygdalar fear conditioning in a subset of chronic fatigue syndrome patients| url = https://www.guptaprogram.com/wp-content/uploads/2019/02/cfs-hypothesis-medical-hypotheses-article.pdf | journal=Medical Hypotheses|volume=59|issue=6 | pages = 727–735|quote=|via=}}</ref> - [https://www.guptaprogram.com/wp-content/uploads/2019/02/cfs-hypothesis-medical-hypotheses-article.pdf (Full text)]
::The ''Medical Hypotheses'' journal that published this is reported to be the world's most controversial journal,<ref name="MHcontroversial">{{Cite journal | title = Editor says no to peer review for controversial journal | date = 2010-03-18| url = https://www.nature.com/articles/news.2010.132|journal=Nature | last = Cressey | first = Daniel|language=en|doi=10.1038/news.2010.132|issn=1476-4687}}</ref> and describes itself as publishing hypothesis that are "radical, speculative and non-mainstream scientific ideas" and some "where experimental support is yet fragmentary".<ref name="MH">{{Cite web | url=https://www.elsevier.com/journals/medical-hypotheses/0306-9877/guide-for-authors | title = Guide for authors - Medical Hypotheses - ISSN 0306-9877 | last = | first = | authorlink = | date = | website = Elsevier|language=en|archive-url=|archive-date=|url-status=|access-date=2022-06-03}}</ref><ref name="MH-SS">{{Cite web | url=https://www.sciencedirect.com/journal/medical-hypotheses | title = Medical Hypotheses {{!}} Journal | last = | first = | authorlink = | date = | website = ScienceDirect.com by Elsevier|language=en-us|archive-url=|archive-date=|url-status=|access-date=2022-06-03}}</ref> It is peer-reviewed.

==Personal experiences==
* 2009, [http://web.archive.org/web/20090405173658/http://www.phoenix-cfs.org/BlogAmygdalaTraining1.htm Amygdala Training part 1 Blog] - Cort Johnson (archived)
* 2012, [https://phoenixrising.me/myalgic-encephalomyelitis-chronic-fatigue-syndrome-mecfs-treatments/mind-body/amygdala-retraining/a-psychotherapist-reviews-ashtok-guptas-amygdala-retraining-program-by-tamara-lewis/ A Psychotherapist Reviews Ashok Gupta’s Amygdala Retraining Program] – Tamara Lewis
* 2010, [https://cfs-survivors.org/blog/2010/07/11/just-passed-six-months-on-the-gupta-programme/ Just passed six months on the Gupta programme] - Graham Stoney

==See also ==
*[[Criticisms of The Gupta Program]]
*[[Ashok Gupta]]
*[[Brain retraining]]
*[[Pseudoscience]]
*[[Mindfulness]]

==Learn more ==
* 2018, [https://www.asa.org.uk/rulings/harley-street-solutions-ltd-a17-400324.html Advertising Standards Association complaint result]
* 2009, [https://web.archive.org/web/20210422023328/https://www.prohealth.com/library/qa-session-with-ashok-gupta-developer-of-the-amygdala-retraining-program-for-me-cfs-and-fm-held-july-10-2009-26402 Q&A Session with Ashok Gupta developer of Amygdala Retraining Program for ME/CFS, FM] - ProHealth (archived)

==References ==
{{Reflist}}

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

The MEAction Network

2024-05-23T23:36:43Z

JaimeS:/* Pandemic Press Outreach */ fixed some spelling

[[File:Meaction logo red.png|thumb]][http://www.meaction.net/ #MEAction] (The Myalgic Encephalomyelitis Action Network) is a worldwide [[ME/CFS]] patient advocacy group co-founded May 12, 2015 by [[Jennifer Brea]] and [[Beth Mazur]].

Its focus is on empowering patients to take action to improve the status of research and clinical care through nationally organized efforts with the support of local affiliate groups in countries around the world. #MEAction also runs special interest groups focused on science and research, public education and press relations.

==History==
<nowiki>#</nowiki>MEAction began in 2015 with co-founders [[Beth Mazur]] and [[Jennifer Brea|Jen Brea]]. In 2016, [[Ben Hsuborger]] was hired as Advocacy Director, [[Jaime Seltzer]] was hired as Managing Editor, and [[Adriane Tillman]]. Seltzer worked at the Stanford Genome Technology Center under [[Ronald Davis|Dr. Ron Davis]] before returning in 2018 in the role of Director of Scientific and Medical Outreach, later Scientific Director. [[Laurie Jones]] was brought on as Executive Director, [[Holly Lanham]] as Social Media Coordinator, [[Erin Roediger]] as Programs and Campaigns Director, [[Steven Moloney]] as Video and Communications Manager, and [[Marynka Marquez]] as Development Coordinator.<ref>{{Cite web|url=https://www.meaction.net/about/team/|title=Staff|last=MEAction|date=April 22, 2024|website=MEAction}}</ref>

<nowiki>#</nowiki>MEAction began as a grassroots movement with the goal of making advocacy more accessible by leveraging technology that was not yet standard at the time, like videoconferencing software and Slack. In 2016, #MEAction formed the first #MillionsMissing protests. A 'test run' of #MillionsMissing ran in twelve cities worldwide in 2016; later in the same year, the protests expanded to include over a hundred events, local and virtual, to fight for better government research funding, accessible clinical care, and broader recognition of ME.<ref name=":1">{{Cite web|url=https://www.marieclaire.co.uk/reports/millionsmissing-campaign-me-595261|title=The important reason why people are leaving shoes around cities|last=Banach|first=Je|date=May 2018|website=Marie Claire}}</ref> MillionsMissing events continue today, with the 2024 efforts focused around medical education: the Teach ME, Treat ME initiative.<ref name=":2">{{Cite web|url=https://millionsmissing.meaction.net/mm24/|title=Teach ME, Treat ME|last=MEAction|date=January 2024|website=Millions Missing}}</ref>

==Notable projects==

==== PACE Trial Petition ====
MEAction's first major action as an organization was the PACE petition signed by 12,000 individuals,<ref name=":1" /> protesting the [[PACE trial]] and requesting retraction of the paper on grounds of unethical conduct. MEAction worked with [[David Tuller]] to obtain three dozen signatures from clinicians and researchers for an open letter asking the Lancet for an independent review of the PACE trial.

MEAction UK has demanded "an immediate end to the use of [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]."<ref name=":0">{{Cite news | url=https://www.meaction.net/2018/07/01/what-next-for-the-nice-guidelines/ | title = Parliament Plays NICE - #MEAction | last =#MEAction | first= | date = 2018-07-01|work=|access-date=2018-11-14|archive-url=|archive-date=|url-status=|language=en-US}}</ref> While the ME treatment guidelines were under review by NICE, MEAction demanded an interim change to the existing guidelines to stop the use of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) before the new guidelines were published.<ref name=":0" />
==== MillionsMissing ====
The [[Millions Missing protests]] were created by MEAction. Millions Missing (or #MillionsMissing) is an annual event or series of events that began at #MEAction as the idea of one advocate that grew into a concept adopted by ME organizations worldwide.

In discussions, ME advocates kept returning to the idea that [[post-exertional malaise]] (PEM) made it challenging if not impossible to protest in person. "Millions Missing" was a way to represent those who were too ill to protest, and those who had died due to complications of the disease.

==== MEpedia ====
[[MEpedia]] is a project founded by [[The MEAction Network]], powered by the patient community, and built by volunteers including patients, students, and researchers. It is a crowd-sourced knowledge base on the history, science and medicine of [[Myalgic encephalomyelitis|ME]], [[Chronic fatigue syndrome|CFS]], and [[related diseases]].

Currently, MEpedia has over 3,000 articles which have been viewed over 40 million times.

==== Medical Education ====

===== ''Unrest'' CME and Postcards to Doctors Initiative =====
In 2018, Jen Brea's documentary about ME from Shella Films, ''[[Unrest]]'', debuted. MEAction then worked with [[Lucinda Bateman|Dr. Lucinda Bateman]] and [[David Kaufman|Dr. David Kaufman]] to produce a short accompanying film about diagnosis and treatment for continuing education (CE, or CME) credits.<ref>{{Cite web|url=https://www.unrest.film/cme|title=Watch Unrest and Receive Continuing Medical Education (CME / CE) Credit|date=April 22, 2024|website=Unrest Continuing Medical Education}}</ref> These are credits required for medical providers to maintain their licenses in the United States. Then, MEAction launched the ''Postcards to Doctors'' campaign, in which members of the community sent hand-written postcards urging clinicians to take the CME and share it with others. The initiative ran in 2019 and 2020 and, as a result, over 700 medical providers took the ''Unrest'' CME.<ref name=":3">{{Cite web|url=https://www.meaction.net/2020/01/28/postcards-returns-2/|title=Celebrating Postcards To Doctors: Final Report|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=January 28, 2020|website=MEAction.net}}</ref> The rate of uptake for the Postcards initiative alone rivaled that of in-person offerings at conferences on ME/CFS,<ref name=":3" /> and the total number of providers who took the ''Unrest'' CME over its two-year run is many times the uptake for the average CME.<ref>{{Cite web|url=n/a|title=Interview re: CME uptake|last=Shumaker|first=Theresa|last2=Interviewer: Seltzer|first2=Jaime|date=April 17, 2024|quote="The articles [in Mayo Clinic Proceedings] are available for 2 years. The number of learners is so varied- anywhere from 12-70 MDs per year, and also a varied number of other health professionals for each article ( Nurses, PA, others)."}}</ref>

===== Long COVID CME =====
In 2020, #MEAction held two seminars at the start of the pandemic, one for medical providers<ref name=":4">{{Cite web|url=https://www.meaction.net/seminar/|title=Post-Viral ME/CFS: Diagnosing & treating ME/CFS in the time of COVID|last=MEAction|date=August 2020|website=MEAction.net}}</ref> and one for laypersons.<ref>{{Cite web|url=https://www.meaction.net/longcovid/|title=Long COVID Seminar, 2020|last=MEAction|date=May 2020|website=meaction.net}}</ref> The former was adapted to a presentation at the Rochester School of Medicine and Dentistry and offered for credit as part of Grand Rounds.<ref name=":4" />

===== Mayo Clinic Proceedings CME =====
In 2023, #MEAction produced a [https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext Concise Clinical Review in ''Mayo Clinic Proceedings''] as part of a grant from the Society to Improve Diagnosis in Medicine.<ref>{{Cite journal|title=Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2023-10|url=https://pubmed.ncbi.nlm.nih.gov/37793728/|journal=Mayo Clinic Proceedings|volume=98|issue=10|pages=1544–1551|last=Grach|first=Stephanie L.|last2=Seltzer|first2=Jaime|last3=Chon|first3=Tony Y.|last4=Ganesh|first4=Ravindra|doi=10.1016/j.mayocp.2023.07.032|pmid=37793728|issn=1942-5546}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/22/mayo-grant/|title=#MEAction & Mayo Win Grant For Diagnostic Improvement|last=MEAction|date=September 22, 2022}}</ref><ref>{{Cite web|url=https://www.improvediagnosis.org/dxqi-2022-grantees/|title=DxQI 2022 Grantees|website=Society to Improve Diagnosis in Medicine|language=en-US|access-date=2024-04-22}}</ref> This project also funded the co-creation of a diagnostic and treatment algorithm and edits to Mayo's public-facing page on ME/CFS.

===== Teach ME, Treat ME Initiative =====
MEAction's #TeachMETreatME (Teach ME, Treat ME) campaign in 2024 was built around in-person and virtual medical education events at university hospitals, medical systems, and other healthcare institutions.<ref name=":2" /> In addition, MEAction sought longer-term partnerships to transform medical education and clinical care at institutions across the US.

==== Long COVID and the SARS-CoV-2 Pandemic ====

===== Community Outreach and Materials =====
* [https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020) #MEAction knew a wave of disinformation was about to hit during the pandemic. In April 2020, #MEAction created a guide to spotting and responding to healthcare-related disinformation.
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022) In response to the likely surge of infection-associated chronic illness, #MEAction created a guide to pacing for the newly-diagnosed in early 2020. Subsequently, #MEAction partnered with Long COVID Families to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Pediatric Pacing Guide], and with the Patient-Led Research Collaborative (PLRC) to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Clinician's Pacing Guide]
* The Hospitalization Kit (May 2020) #MEAction created two handouts for people with ME who face hospitalization due to COVID infection, including the [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] and the [https://www.meaction.net/resource/hospital-form/ Hospital Form].

===== Pandemic Press Outreach =====
In addition, MEAction staff, including Scientific Director [[Jaime Seltzer]], Advocacy Director [[Ben Hsuborger]], and Public Relations Manager [[Adriane Tillman]] communicated with multiple news outlets regarding ME/CFS and Long COVID, including ''TIME, Rolling Stone, Infection Control Today, The Washington Post, The Atlantic, NPR, the LA Times, Medscape, Stat News, Muck Rock, National Geographic,'' and many other publications.<ref>{{Cite web|url=https://www.meaction.net/2020/06/09/meaction-gets-me-in-the-spotlight/|title=#MEAction Puts ME Into The Spotlight|last=MEAction|date=June 9, 2020|website=MEAction}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/20/millionsmissing-press-hits-rolling-in/|title=#MillionsMissing Press Hits Are Rolling In!|last=Tillman|first=Adriane|authorlink=Adriane Tillman|date=September 20, 2022|website=MEAction.net}}</ref><ref>{{Cite web|url=https://www.meaction.net/2023/06/06/why-we-keep-telling-the-story-of-me-to-the-press/|title=Why We Keep Telling The Story Of ME To The Press|last=MEAction|date=June 6, 2023|website=MEAction.net}}</ref> Advocates at #MEAction UK and state and local groups at #MEAction gained many press hits as well.<ref>{{Cite web|url=https://www.meaction.net/2020/11/03/long-covid-patients-warned-of-damaging-exercise-programme/|title=Long COVID Patients Warned Of Damaging Exercise Programme|last=MEAction|date=November 3, 2020|website=MEAction.net}}</ref>

== Work on National and International Committees ==

===== CDC =====
* MEAction representatives worked on a CDC committee to revamp their public-facing pages on ME/CFS in 2016; these changes were completed July 2018.<ref>{{Cite web|url=https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me|title=CDC Revises Its Information On ME|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=July 29, 2018|website=MEAction.net}}</ref><ref name=":5">[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref name=":6">[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref> #MEAction also surveyed the community for additional feedback on the site.
*

===== CFSAC =====
* MEAction became a non-voting liaison representative to the [[Chronic Fatigue Syndrome Advisory Committee]] (CFSAC) for the term June 2017 to June 2019. CFSAC, an advisory committee to the US Office of the Assistant Secretary for Health, allots three seats to patient advocacy groups.

===== NIH =====

===== FDA =====

===== AHRQ =====

===== WHO =====

===Congressional Outreach===

===Medical & Scientific Fact Sheets===
*[http://www.meaction.net/wp-content/uploads/2018/10/Diagnosis-and-Management-of-Myalgic-Encephalomyelitis-MEAction.pdf Diagnosis & Management of ME] (2018)
*[https://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf #MEAction Research Summary] (2019)
*[https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020)
* [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] (May 2020)
* [https://www.meaction.net/resource/hospital-form/ Hospital Form] (May 2020)
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022)

==Online presence==

*[http://www.meaction.net/ Website]
*[http://twitter.com/MEActNet Twitter] /X
*[https://www.instagram.com/meactnet/ Instagram]
*[http://fb.com/meactnet Facebook]

== References ==
{{Reflist}}

[[Category:Patient groups]]
[[Category:American patient groups]]
[[Category:International patient groups]]
[[Category:Blogs]]

Talk:Ischemic Cascade

2024-05-09T13:40:16Z

JaimeS:/* Citations */ new section

== Citations -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 13:40, May 9, 2024 (UTC) ==

Please cite sources on your work.

Please revisit the MEpedia Science Guidelines for additional information.

User talk:Christopherd

2024-05-09T13:38:39Z

JaimeS:/* Ischemic cascade article */ new section

{{Template:Welcome|realName=Chris D|name=Christopherd}}

-- [[User:New user message|New user message]] ([[User talk:New user message|talk]]) 01:53, May 9, 2024 (UTC)

== Ischemic cascade article -- [[User:JaimeS|JaimeS]] ([[User talk:JaimeS|talk]]) 13:38, May 9, 2024 (UTC) ==

Hello, Christopher D!

Please note that every piece of info on MEpedia needs to be cited. Please revisit the Science Guidelines on MEpedia and cite everything you state by using the "Cite" button at the top of the screen.

Patricia Kane protocol

2024-05-09T13:35:50Z

JaimeS:Removed her PhD because I can't find evidence of it. There is another Patricia Kane working at a SUNY with a degree in molecular biology whose interests looks similar, but I can't prove it's the same person.

The '''Patricia Kane protocol''' (PK protocol) is an experimental treatment for neurological disease involving intravenous infusion of [[phospholipid]]s and [[methylation cycle|methylation]] factors, along with dietary changes and supplements.

It is based on the theory that in diseases that Kane classes as those of neurotoxicity (e.g., [[multiple sclerosis]], [[Parkinson's disease]], [[chronic fatigue syndrome]]), toxins destabilize cell membranes, leading to dysfunctions in cell signaling and [[homeostasis]] and [[neurodegeneration]].

Kane's treatments have never undergone double-blind, placebo-controlled testing in order to substantiate her claims. In a 2008 article in a CBS affiliate discussed Dr. Kane's work at the Haverford Wellness Center. Patients reported Kane told them their neurological diseases were "a build up of toxins". Another patient reported that Kane took thousands of dollars from her for treatments, and told her that she wasn't dying [of ALS]. The patient is now deceased.<ref>{{Cite web|url=https://web.archive.org/web/20090307114535/http://cbs3.com/investigations/i.team.investigation.2.814584.html|title=I-Team Follow-Up: False Hope - cbs3.com|date=2009-03-07|website=web.archive.org|access-date=2024-05-09}}</ref>

==Theory==

Kane seeks to correct deficiencies of [[Omega 6 fatty acid |omega 6]] and [[arachidonic acid]] in cell membranes and correct the over-expression of [[very long chain fatty acid]]s.

==Protocol==

The protocol is individualized but involves several key components: intravenous infusion of [[phosphatidylcholine]] and [[sodium phenylbutyrate]], pushes of [[glutathione]] and [[folinic acid]] (leucovorin), [[methylcobalamin]] injections, and increased intake of [[essential fatty acid]]s.

[[Patricia Kane]] recommends elimination of all processed foods, regular intake of pastured [[egg]]s, and a "cell membrane stabilizing drink" consisting of liquid phosphatidylcholine, [[evening primrose oil]], [[whey]] protein, and a blend of [[safflower oil]] and [[flaxseed oil]] in a 4:1 ratio of Omega-6 to [[Omega 3 fatty acid|Omega 3]], and a blend of seeds. She also recommends a low carbohydrate, [[ketogenic diet|high fat]] diet.

==Medical applications==

Kane believes her protocol can offer clinical benefit in a range of neurological disorders including [[amyotrophic lateral sclerosis |ALS]], [[Parkinson's disease]], [[Multiple sclerosis]], [[Alzheimer's]], [[autism]], pervasive developmental delay, [[seizure]] disorders, post stroke, [[traumatic brain injury]], metabolic]] and genetic abnormalities.

==Evidence==
There have been no clinical trials of the PK protocol for the treatment of any disease.

Some of the individual components of the protocol have been studied.

===Sodium phenylbutyrate===
In mouse models of Parkinson's, sodium phenylbutyrate was found to protect the loss of [[dopamine]]rgic neurons.<ref>{{Cite journal | last = Iannitti | first = Tommaso | author-link = | last2 = Palmieri | first2 = Beniamino | authorlink2 = | date = Sep 2011 | title = Clinical and Experimental Applications of Sodium Phenylbutyrate|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3586072/|journal=Drugs in R&D|volume=11|issue=3|pages=227–249|doi=10.2165/11591280-000000000-00000|issn=1174-5886|pmc=3586072|pmid=21902286|access-date=|quote=|via=}}</ref><ref>{{Cite journal | last = Freed | first = Curt R. | last2 = Lebin | first2 = Jacob | last3 = Luong | first3 = Nancy | last4 = Cummiskey | first4 = Jessica | last5 = Bercury | first5 = Kathryn | last6 = Zhou | first6 = Wenbo | date = 2011-04-29 | title = Phenylbutyrate Up-regulates the DJ-1 Protein and Protects Neurons in Cell Culture and in Animal Models of Parkinson Disease|url=http://www.jbc.org/content/286/17/14941|journal=Journal of Biological Chemistry|language=en|volume=286|issue=17|pages=14941–14951|doi=10.1074/jbc.M110.211029|issn=0021-9258|pmid=21372141}}</ref><ref>{{Cite journal | last = Pahan | first = Kalipada | last2 = Gendelman | first2 = Howard E. | last3 = Brahmachari | first3 = Saurav | last4 = Liu | first4 = Xiaojuan | last5 = Jana | first5 = Arundhati | last6 = Ghosh | first6 = Anamitra | last7 = Roy | first7 = Avik | date = 2012-06-18 | title = Sodium Phenylbutyrate Controls Neuroinflammatory and Antioxidant Activities and Protects Dopaminergic Neurons in Mouse Models of Parkinson’s Disease|url=https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0038113|journal=PLOS ONE|language=en|volume=7|issue=6| pages = e38113|doi=10.1371/journal.pone.0038113|issn=1932-6203|pmc=3377667|pmid=22723850}}</ref>

==See also==
*[[Omega 3 fatty acid hypothesis]]

==References==
{{Reflist}}

[[Category:Protocols]]
[[Category:Potential treatments]]
[[Category:Diets]]

Patricia Kane protocol

2024-05-09T13:26:22Z

JaimeS:I formalized the language in this article and fixed the citations.

The '''Patricia Kane protocol''' (PK protocol) is an experimental treatment for neurological disease involving intravenous infusion of [[phospholipid]]s and [[methylation cycle|methylation]] factors, along with dietary changes and supplements.

It is based on the theory that in diseases that Kane classes as those of neurotoxicity (e.g., [[multiple sclerosis]], [[Parkinson's disease]], [[chronic fatigue syndrome]]), toxins destabilize cell membranes, leading to dysfunctions in cell signaling and [[homeostasis]] and [[neurodegeneration]].

Dr. Patricia Kane holds a PhD rather than an MD, and her treatments have never undergone double-blind, placebo-controlled testing in order to substantiate her claims. In a 2008 article in a CBS affiliate discussed Dr. Kane's work at the Haverford Wellness Center. Patients reported Kane told them their neurological diseases were "a build up of toxins". Another patient reported that Kane took thousands of dollars from her for treatments, and told her that she wasn't dying [of ALS]. The patient is now deceased.<ref>{{Cite web|url=https://web.archive.org/web/20090307114535/http://cbs3.com/investigations/i.team.investigation.2.814584.html|title=I-Team Follow-Up: False Hope - cbs3.com|date=2009-03-07|website=web.archive.org|access-date=2024-05-09}}</ref>

==Theory==

Kane seeks to correct deficiencies of [[Omega 6 fatty acid |omega 6]] and [[arachidonic acid]] in cell membranes and correct the over-expression of [[very long chain fatty acid]]s.

==Protocol==

The protocol is individualized but involves several key components: intravenous infusion of [[phosphatidylcholine]] and [[sodium phenylbutyrate]], pushes of [[glutathione]] and [[folinic acid]] (leucovorin), [[methylcobalamin]] injections, and increased intake of [[essential fatty acid]]s.

[[Patricia Kane]] recommends elimination of all processed foods, regular intake of pastured [[egg]]s, and a "cell membrane stabilizing drink" consisting of liquid phosphatidylcholine, [[evening primrose oil]], [[whey]] protein, and a blend of [[safflower oil]] and [[flaxseed oil]] in a 4:1 ratio of Omega-6 to [[Omega 3 fatty acid|Omega 3]], and a blend of seeds. She also recommends a low carbohydrate, [[ketogenic diet|high fat]] diet.

==Medical applications==

Kane believes her protocol can offer clinical benefit in a range of neurological disorders including [[amyotrophic lateral sclerosis |ALS]], [[Parkinson's disease]], [[Multiple sclerosis]], [[Alzheimer's]], [[autism]], pervasive developmental delay, [[seizure]] disorders, post stroke, [[traumatic brain injury]], metabolic]] and genetic abnormalities.

==Evidence==
There have been no clinical trials of the PK protocol for the treatment of any disease.

Some of the individual components of the protocol have been studied.

===Sodium phenylbutyrate===
In mouse models of Parkinson's, sodium phenylbutyrate was found to protect the loss of [[dopamine]]rgic neurons.<ref>{{Cite journal | last = Iannitti | first = Tommaso | author-link = | last2 = Palmieri | first2 = Beniamino | authorlink2 = | date = Sep 2011 | title = Clinical and Experimental Applications of Sodium Phenylbutyrate|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3586072/|journal=Drugs in R&D|volume=11|issue=3|pages=227–249|doi=10.2165/11591280-000000000-00000|issn=1174-5886|pmc=3586072|pmid=21902286|access-date=|quote=|via=}}</ref><ref>{{Cite journal | last = Freed | first = Curt R. | last2 = Lebin | first2 = Jacob | last3 = Luong | first3 = Nancy | last4 = Cummiskey | first4 = Jessica | last5 = Bercury | first5 = Kathryn | last6 = Zhou | first6 = Wenbo | date = 2011-04-29 | title = Phenylbutyrate Up-regulates the DJ-1 Protein and Protects Neurons in Cell Culture and in Animal Models of Parkinson Disease|url=http://www.jbc.org/content/286/17/14941|journal=Journal of Biological Chemistry|language=en|volume=286|issue=17|pages=14941–14951|doi=10.1074/jbc.M110.211029|issn=0021-9258|pmid=21372141}}</ref><ref>{{Cite journal | last = Pahan | first = Kalipada | last2 = Gendelman | first2 = Howard E. | last3 = Brahmachari | first3 = Saurav | last4 = Liu | first4 = Xiaojuan | last5 = Jana | first5 = Arundhati | last6 = Ghosh | first6 = Anamitra | last7 = Roy | first7 = Avik | date = 2012-06-18 | title = Sodium Phenylbutyrate Controls Neuroinflammatory and Antioxidant Activities and Protects Dopaminergic Neurons in Mouse Models of Parkinson’s Disease|url=https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0038113|journal=PLOS ONE|language=en|volume=7|issue=6| pages = e38113|doi=10.1371/journal.pone.0038113|issn=1932-6203|pmc=3377667|pmid=22723850}}</ref>

==See also==
*[[Omega 3 fatty acid hypothesis]]

==References==
{{Reflist}}

[[Category:Protocols]]
[[Category:Potential treatments]]
[[Category:Diets]]

The MEAction Network

2024-04-22T23:48:06Z

JaimeS:/* Medical & Scientific Fact Sheets */ Removed Reddit; MEAction is not active there.

[[File:Meaction logo red.png|thumb]][http://www.meaction.net/ #MEAction] (The Myalgic Encephalomyelitis Action Network) is a worldwide [[ME/CFS]] patient advocacy group co-founded May 12, 2015 by [[Jennifer Brea]] and [[Beth Mazur]].

Its focus is on empowering patients to take action to improve the status of research and clinical care through nationally organized efforts with the support of local affiliate groups in countries around the world. #MEAction also runs special interest groups focused on science and research, public education and press relations.

==History==
<nowiki>#</nowiki>MEAction began in 2015 with co-founders [[Beth Mazur]] and [[Jennifer Brea|Jen Brea]]. In 2016, [[Ben Hsuborger]] was hired as Advocacy Director, [[Jaime Seltzer]] was hired as Managing Editor, and [[Adriane Tillman]]. Seltzer worked at the Stanford Genome Technology Center under [[Ronald Davis|Dr. Ron Davis]] before returning in 2018 in the role of Director of Scientific and Medical Outreach, later Scientific Director. [[Laurie Jones]] was brought on as Executive Director, [[Holly Lanham]] as Social Media Coordinator, [[Erin Roediger]] as Programs and Campaigns Director, [[Steven Moloney]] as Video and Communications Manager, and [[Marynka Marquez]] as Development Coordinator.

<nowiki>#</nowiki>MEAction began as a grassroots movement with the goal of making advocacy more accessible by leveraging technology that was not yet standard at the time, like videoconferencing software and Slack. In 2016, #MEAction formed the first #MillionsMissing protests. A 'test run' of #MillionsMissing ran in twelve cities worldwide in 2016; later in the same year, the protests expanded to include over a hundred events, local and virtual, to fight for better government research funding, accessible clinical care, and broader recognition of ME.<ref name=":1">{{Cite web|url=https://www.marieclaire.co.uk/reports/millionsmissing-campaign-me-595261|title=The important reason why people are leaving shoes around cities|last=Banach|first=Je|date=May 2018|website=Marie Claire}}</ref> MillionsMissing events continue today, with the 2024 efforts focused around medical education: the Teach ME, Treat ME initiative.<ref name=":2">{{Cite web|url=https://millionsmissing.meaction.net/mm24/|title=Teach ME, Treat ME|last=MEAction|date=January 2024|website=Millions Missing}}</ref>

==Notable projects==

==== PACE Trial Petition ====
MEAction's first major action as an organization was the PACE petition signed by 12,000 individuals,<ref name=":1" /> protesting the [[PACE trial]] and requesting retraction of the paper on grounds of unethical conduct. MEAction worked with [[David Tuller]] to obtain three dozen signatures from clinicians and researchers for an open letter asking the Lancet for an independent review of the PACE trial;

MEAction UK has demanded "an immediate end to the use of [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]."<ref name=":0">{{Cite news | url=https://www.meaction.net/2018/07/01/what-next-for-the-nice-guidelines/ | title = Parliament Plays NICE - #MEAction | last =#MEAction | first= | date = 2018-07-01|work=|access-date=2018-11-14|archive-url=|archive-date=|url-status=|language=en-US}}</ref> The [[United Kingdom|UK]] treatment guidelines for ME/CFS, known as the NICE guidelines are currently under review, but MEAction has demanded an interim change to the existing guidelines to stop the use of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) before the new guidelines are published.<ref name=":0" />
==== MillionsMissing ====
The [[Millions Missing protests]] were created by MEAction. Millions Missing (or #MillionsMissing) is an annual event or series of events that began at #MEAction as the idea of one advocate that grew into a concept adopted by ME organizations worldwide.

In discussions, ME advocates kept returning to the idea that [[post-exertional malaise]] (PEM) made it challenging if not impossible to protest in person. "Millions Missing" was a way to represent those who were too ill to protest, and those who had died due to complications of the disease.

==== MEpedia ====
[[MEpedia]] is a project founded by [[The MEAction Network]], powered by the patient community, and built by volunteers including patients, students, and researchers. It is a crowd-sourced knowledge base on the history, science and medicine of [[Myalgic encephalomyelitis|ME]], [[Chronic fatigue syndrome|CFS]], and [[related diseases]].

Currently, MEpedia has over 3,000 articles which have been viewed over 40 million times.

==== Medical Education ====

===== ''Unrest'' CME and Postcards to Doctors Initiative =====
In 2018, Jen Brea's documentary about ME from Shella Films, ''[[Unrest]]'', debuted. MEAction then worked with [[Lucinda Bateman|Dr. Lucinda Bateman]] and [[David Kaufman|Dr. David Kaufman]] to produce a short accompanying film about diagnosis and treatment for continuing education (CE, or CME) credits.<ref>{{Cite web|url=https://www.unrest.film/cme|title=Watch Unrest and Receive Continuing Medical Education (CME / CE) Credit|date=April 22, 2024|website=Unrest Continuing Medical Education}}</ref> These are credits required for medical providers to maintain their licenses in the United States. Then, MEAction launched the ''Postcards to Doctors'' campaign, in which members of the community sent hand-written postcards urging clinicians to take the CME and share it with others. The initiative ran in 2019 and 2020 and, as a result, over 700 medical providers took the ''Unrest'' CME.<ref name=":3">{{Cite web|url=https://www.meaction.net/2020/01/28/postcards-returns-2/|title=Celebrating Postcards To Doctors: Final Report|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=January 28, 2020|website=MEAction.net}}</ref> The rate of uptake for the Postcards initiative alone rivaled that of in-person offerings at conferences on ME/CFS,<ref name=":3" /> and the total number of providers who took the ''Unrest'' CME over its two-year run is many times the uptake for the average CME.<ref>{{Cite web|url=n/a|title=Interview re: CME uptake|last=Shumaker|first=Theresa|last2=Interviewer: Seltzer|first2=Jaime|date=April 17, 2024|quote="The articles [in Mayo Clinic Proceedings] are available for 2 years. The number of learners is so varied- anywhere from 12-70 MDs per year, and also a varied number of other health professionals for each article ( Nurses, PA, others)."}}</ref>

===== Long COVID CME =====
In 2020, #MEAction held two seminars at the start of the pandemic, one for medical providers<ref name=":4">{{Cite web|url=https://www.meaction.net/seminar/|title=Post-Viral ME/CFS: Diagnosing & treating ME/CFS in the time of COVID|last=MEAction|date=August 2020|website=MEAction.net}}</ref> and one for laypersons.<ref>{{Cite web|url=https://www.meaction.net/longcovid/|title=Long COVID Seminar, 2020|last=MEAction|date=May 2020|website=meaction.net}}</ref> The former was adapted to a presentation at the Rochester School of Medicine and Dentistry and offered for credit as part of Grand Rounds.<ref name=":4" />

===== Mayo Clinic Proceedings CME =====
In 2023, #MEAction produced a [https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext Concise Clinical Review in ''Mayo Clinic Proceedings''] as part of a grant from the Society to Improve Diagnosis in Medicine.<ref>{{Cite journal|title=Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2023-10|url=https://pubmed.ncbi.nlm.nih.gov/37793728/|journal=Mayo Clinic Proceedings|volume=98|issue=10|pages=1544–1551|last=Grach|first=Stephanie L.|last2=Seltzer|first2=Jaime|last3=Chon|first3=Tony Y.|last4=Ganesh|first4=Ravindra|doi=10.1016/j.mayocp.2023.07.032|pmid=37793728|issn=1942-5546}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/22/mayo-grant/|title=#MEAction & Mayo Win Grant For Diagnostic Improvement|last=MEAction|date=September 22, 2022}}</ref><ref>{{Cite web|url=https://www.improvediagnosis.org/dxqi-2022-grantees/|title=DxQI 2022 Grantees|website=Society to Improve Diagnosis in Medicine|language=en-US|access-date=2024-04-22}}</ref> This project also funded the co-creation of a diagnostic and treatment algorithm and edits to Mayo's public-facing page on ME/CFS.

===== Teach ME, Treat ME Initiative =====
MEAction's #TeachMETreatME (Teach ME, Treat ME) campaign in 2024 was built around in-person and virtual medical education events at university hospitals, medical systems, and other healthcare institutions.<ref name=":2" />

==== Long COVID and the SARS-CoV-2 Pandemic ====

===== Community Outreach and Materials =====
* [https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020) #MEAction knew a wave of disinformation was about to hit during the pandemic. In April 2020, #MEAction created a guide to spotting and responding to healthcare-related disinformation.
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022) In response to the likely surge of infection-associated chronic illness, #MEAction created a guide to pacing for the newly-diagnosed in early 2020. Subsequently, #MEAction partnered with Long COVID Families to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Pediatric Pacing Guide], and with the Patient-Led Research Collaborative (PLRC) to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Clinician's Pacing Guide]
* The Hospitalization Kit (May 2020) #MEAction created two handouts for people with ME who face hospitalization due to COVID infection, including the [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] and the [https://www.meaction.net/resource/hospital-form/ Hospital Form].

===== Pandemic Press Outreach =====
In addition, MEAction staff, including Scientific Director [[Jaime Seltzer]], Advocacy Director [[Ben Hsuborger]], and Public Relations Manager [[Adriane Tillman]] communicated with multiple news outlets regarding ME/CFS and Long COVID, including ''TIME, Rolling Stone, Infection Control Today, The Washington Post, The Atlantic, NPR, the LA Times, Medscape, Stat News, Muck Rock, National Geographic,'' and many other publications.<ref>{{Cite web|url=https://www.meaction.net/2020/06/09/meaction-gets-me-in-the-spotlight/|title=#MEAction Puts ME Into The Spotlight|last=MEAction|date=June 9, 2020|website=MEAction}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/20/millionsmissing-press-hits-rolling-in/|title=#MillionsMissing Press Hits Are Rolling In!|last=Tillman|first=Adriane|authorlink=Adriane Tillman|date=September 20, 2022|website=MEAction.net}}</ref><ref>{{Cite web|url=https://www.meaction.net/2023/06/06/why-we-keep-telling-the-story-of-me-to-the-press/|title=Why We Keep Telling The Story Of ME To The Press|last=MEAction|date=June 6, 2023|website=MEAction.net}}</ref> Advocated at #MEAction UK and state and local groups at #MEAction gained many press hits as well.<ref>{{Cite web|url=https://www.meaction.net/2020/11/03/long-covid-patients-warned-of-damaging-exercise-programme/|title=Long COVID Patients Warned Of Damaging Exercise Programme|last=MEAction|date=November 3, 2020|website=MEAction.net}}</ref>

== Work on National and International Committees ==

===== CDC =====
* MEAction representatives worked on a CDC committee to revamp their public-facing pages on ME/CFS in 2016; these changes were completed July 2018.<ref>{{Cite web|url=https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me|title=CDC Revises Its Information On ME|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=July 29, 2018|website=MEAction.net}}</ref><ref name=":5">[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref name=":6">[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref> #MEAction also surveyed the community for additional feedback on the site.
*

===== CFSAC =====
* MEAction became a non-voting liaison representative to the [[Chronic Fatigue Syndrome Advisory Committee]] (CFSAC) for the term June 2017 to June 2019. CFSAC, an advisory committee to the US Office of the Assistant Secretary for Health, allots three seats to patient advocacy groups.

===== NIH =====

===== FDA =====

===== AHRQ =====

===== WHO =====

===US Congressional Outreach===

===Medical & Scientific Fact Sheets===
*[http://www.meaction.net/wp-content/uploads/2018/10/Diagnosis-and-Management-of-Myalgic-Encephalomyelitis-MEAction.pdf Diagnosis & Management of ME] (2018)
*[https://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf #MEAction Research Summary] (2019)
*[https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020)
* [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] (May 2020)
* [https://www.meaction.net/resource/hospital-form/ Hospital Form] (May 2020)
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022)

==Online presence==

*[http://www.meaction.net/ Website]
*[http://twitter.com/MEActNet Twitter] /X
*[https://www.instagram.com/meactnet/ Instagram]
*[http://fb.com/meactnet Facebook]

== References ==
{{Reflist}}

[[Category:Patient groups]]
[[Category:American patient groups]]
[[Category:International patient groups]]
[[Category:Blogs]]

The MEAction Network

2024-04-22T23:47:35Z

JaimeS:/* Work on National and International Committees */ added WHO

[[File:Meaction logo red.png|thumb]][http://www.meaction.net/ #MEAction] (The Myalgic Encephalomyelitis Action Network) is a worldwide [[ME/CFS]] patient advocacy group co-founded May 12, 2015 by [[Jennifer Brea]] and [[Beth Mazur]].

Its focus is on empowering patients to take action to improve the status of research and clinical care through nationally organized efforts with the support of local affiliate groups in countries around the world. #MEAction also runs special interest groups focused on science and research, public education and press relations.

==History==
<nowiki>#</nowiki>MEAction began in 2015 with co-founders [[Beth Mazur]] and [[Jennifer Brea|Jen Brea]]. In 2016, [[Ben Hsuborger]] was hired as Advocacy Director, [[Jaime Seltzer]] was hired as Managing Editor, and [[Adriane Tillman]]. Seltzer worked at the Stanford Genome Technology Center under [[Ronald Davis|Dr. Ron Davis]] before returning in 2018 in the role of Director of Scientific and Medical Outreach, later Scientific Director. [[Laurie Jones]] was brought on as Executive Director, [[Holly Lanham]] as Social Media Coordinator, [[Erin Roediger]] as Programs and Campaigns Director, [[Steven Moloney]] as Video and Communications Manager, and [[Marynka Marquez]] as Development Coordinator.

<nowiki>#</nowiki>MEAction began as a grassroots movement with the goal of making advocacy more accessible by leveraging technology that was not yet standard at the time, like videoconferencing software and Slack. In 2016, #MEAction formed the first #MillionsMissing protests. A 'test run' of #MillionsMissing ran in twelve cities worldwide in 2016; later in the same year, the protests expanded to include over a hundred events, local and virtual, to fight for better government research funding, accessible clinical care, and broader recognition of ME.<ref name=":1">{{Cite web|url=https://www.marieclaire.co.uk/reports/millionsmissing-campaign-me-595261|title=The important reason why people are leaving shoes around cities|last=Banach|first=Je|date=May 2018|website=Marie Claire}}</ref> MillionsMissing events continue today, with the 2024 efforts focused around medical education: the Teach ME, Treat ME initiative.<ref name=":2">{{Cite web|url=https://millionsmissing.meaction.net/mm24/|title=Teach ME, Treat ME|last=MEAction|date=January 2024|website=Millions Missing}}</ref>

==Notable projects==

==== PACE Trial Petition ====
MEAction's first major action as an organization was the PACE petition signed by 12,000 individuals,<ref name=":1" /> protesting the [[PACE trial]] and requesting retraction of the paper on grounds of unethical conduct. MEAction worked with [[David Tuller]] to obtain three dozen signatures from clinicians and researchers for an open letter asking the Lancet for an independent review of the PACE trial;

MEAction UK has demanded "an immediate end to the use of [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]."<ref name=":0">{{Cite news | url=https://www.meaction.net/2018/07/01/what-next-for-the-nice-guidelines/ | title = Parliament Plays NICE - #MEAction | last =#MEAction | first= | date = 2018-07-01|work=|access-date=2018-11-14|archive-url=|archive-date=|url-status=|language=en-US}}</ref> The [[United Kingdom|UK]] treatment guidelines for ME/CFS, known as the NICE guidelines are currently under review, but MEAction has demanded an interim change to the existing guidelines to stop the use of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) before the new guidelines are published.<ref name=":0" />
==== MillionsMissing ====
The [[Millions Missing protests]] were created by MEAction. Millions Missing (or #MillionsMissing) is an annual event or series of events that began at #MEAction as the idea of one advocate that grew into a concept adopted by ME organizations worldwide.

In discussions, ME advocates kept returning to the idea that [[post-exertional malaise]] (PEM) made it challenging if not impossible to protest in person. "Millions Missing" was a way to represent those who were too ill to protest, and those who had died due to complications of the disease.

==== MEpedia ====
[[MEpedia]] is a project founded by [[The MEAction Network]], powered by the patient community, and built by volunteers including patients, students, and researchers. It is a crowd-sourced knowledge base on the history, science and medicine of [[Myalgic encephalomyelitis|ME]], [[Chronic fatigue syndrome|CFS]], and [[related diseases]].

Currently, MEpedia has over 3,000 articles which have been viewed over 40 million times.

==== Medical Education ====

===== ''Unrest'' CME and Postcards to Doctors Initiative =====
In 2018, Jen Brea's documentary about ME from Shella Films, ''[[Unrest]]'', debuted. MEAction then worked with [[Lucinda Bateman|Dr. Lucinda Bateman]] and [[David Kaufman|Dr. David Kaufman]] to produce a short accompanying film about diagnosis and treatment for continuing education (CE, or CME) credits.<ref>{{Cite web|url=https://www.unrest.film/cme|title=Watch Unrest and Receive Continuing Medical Education (CME / CE) Credit|date=April 22, 2024|website=Unrest Continuing Medical Education}}</ref> These are credits required for medical providers to maintain their licenses in the United States. Then, MEAction launched the ''Postcards to Doctors'' campaign, in which members of the community sent hand-written postcards urging clinicians to take the CME and share it with others. The initiative ran in 2019 and 2020 and, as a result, over 700 medical providers took the ''Unrest'' CME.<ref name=":3">{{Cite web|url=https://www.meaction.net/2020/01/28/postcards-returns-2/|title=Celebrating Postcards To Doctors: Final Report|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=January 28, 2020|website=MEAction.net}}</ref> The rate of uptake for the Postcards initiative alone rivaled that of in-person offerings at conferences on ME/CFS,<ref name=":3" /> and the total number of providers who took the ''Unrest'' CME over its two-year run is many times the uptake for the average CME.<ref>{{Cite web|url=n/a|title=Interview re: CME uptake|last=Shumaker|first=Theresa|last2=Interviewer: Seltzer|first2=Jaime|date=April 17, 2024|quote="The articles [in Mayo Clinic Proceedings] are available for 2 years. The number of learners is so varied- anywhere from 12-70 MDs per year, and also a varied number of other health professionals for each article ( Nurses, PA, others)."}}</ref>

===== Long COVID CME =====
In 2020, #MEAction held two seminars at the start of the pandemic, one for medical providers<ref name=":4">{{Cite web|url=https://www.meaction.net/seminar/|title=Post-Viral ME/CFS: Diagnosing & treating ME/CFS in the time of COVID|last=MEAction|date=August 2020|website=MEAction.net}}</ref> and one for laypersons.<ref>{{Cite web|url=https://www.meaction.net/longcovid/|title=Long COVID Seminar, 2020|last=MEAction|date=May 2020|website=meaction.net}}</ref> The former was adapted to a presentation at the Rochester School of Medicine and Dentistry and offered for credit as part of Grand Rounds.<ref name=":4" />

===== Mayo Clinic Proceedings CME =====
In 2023, #MEAction produced a [https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext Concise Clinical Review in ''Mayo Clinic Proceedings''] as part of a grant from the Society to Improve Diagnosis in Medicine.<ref>{{Cite journal|title=Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2023-10|url=https://pubmed.ncbi.nlm.nih.gov/37793728/|journal=Mayo Clinic Proceedings|volume=98|issue=10|pages=1544–1551|last=Grach|first=Stephanie L.|last2=Seltzer|first2=Jaime|last3=Chon|first3=Tony Y.|last4=Ganesh|first4=Ravindra|doi=10.1016/j.mayocp.2023.07.032|pmid=37793728|issn=1942-5546}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/22/mayo-grant/|title=#MEAction & Mayo Win Grant For Diagnostic Improvement|last=MEAction|date=September 22, 2022}}</ref><ref>{{Cite web|url=https://www.improvediagnosis.org/dxqi-2022-grantees/|title=DxQI 2022 Grantees|website=Society to Improve Diagnosis in Medicine|language=en-US|access-date=2024-04-22}}</ref> This project also funded the co-creation of a diagnostic and treatment algorithm and edits to Mayo's public-facing page on ME/CFS.

===== Teach ME, Treat ME Initiative =====
MEAction's #TeachMETreatME (Teach ME, Treat ME) campaign in 2024 was built around in-person and virtual medical education events at university hospitals, medical systems, and other healthcare institutions.<ref name=":2" />

==== Long COVID and the SARS-CoV-2 Pandemic ====

===== Community Outreach and Materials =====
* [https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020) #MEAction knew a wave of disinformation was about to hit during the pandemic. In April 2020, #MEAction created a guide to spotting and responding to healthcare-related disinformation.
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022) In response to the likely surge of infection-associated chronic illness, #MEAction created a guide to pacing for the newly-diagnosed in early 2020. Subsequently, #MEAction partnered with Long COVID Families to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Pediatric Pacing Guide], and with the Patient-Led Research Collaborative (PLRC) to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Clinician's Pacing Guide]
* The Hospitalization Kit (May 2020) #MEAction created two handouts for people with ME who face hospitalization due to COVID infection, including the [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] and the [https://www.meaction.net/resource/hospital-form/ Hospital Form].

===== Pandemic Press Outreach =====
In addition, MEAction staff, including Scientific Director [[Jaime Seltzer]], Advocacy Director [[Ben Hsuborger]], and Public Relations Manager [[Adriane Tillman]] communicated with multiple news outlets regarding ME/CFS and Long COVID, including ''TIME, Rolling Stone, Infection Control Today, The Washington Post, The Atlantic, NPR, the LA Times, Medscape, Stat News, Muck Rock, National Geographic,'' and many other publications.<ref>{{Cite web|url=https://www.meaction.net/2020/06/09/meaction-gets-me-in-the-spotlight/|title=#MEAction Puts ME Into The Spotlight|last=MEAction|date=June 9, 2020|website=MEAction}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/20/millionsmissing-press-hits-rolling-in/|title=#MillionsMissing Press Hits Are Rolling In!|last=Tillman|first=Adriane|authorlink=Adriane Tillman|date=September 20, 2022|website=MEAction.net}}</ref><ref>{{Cite web|url=https://www.meaction.net/2023/06/06/why-we-keep-telling-the-story-of-me-to-the-press/|title=Why We Keep Telling The Story Of ME To The Press|last=MEAction|date=June 6, 2023|website=MEAction.net}}</ref> Advocated at #MEAction UK and state and local groups at #MEAction gained many press hits as well.<ref>{{Cite web|url=https://www.meaction.net/2020/11/03/long-covid-patients-warned-of-damaging-exercise-programme/|title=Long COVID Patients Warned Of Damaging Exercise Programme|last=MEAction|date=November 3, 2020|website=MEAction.net}}</ref>

== Work on National and International Committees ==

===== CDC =====
* MEAction representatives worked on a CDC committee to revamp their public-facing pages on ME/CFS in 2016; these changes were completed July 2018.<ref>{{Cite web|url=https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me|title=CDC Revises Its Information On ME|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=July 29, 2018|website=MEAction.net}}</ref><ref name=":5">[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref name=":6">[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref> #MEAction also surveyed the community for additional feedback on the site.
*

===== CFSAC =====
* MEAction became a non-voting liaison representative to the [[Chronic Fatigue Syndrome Advisory Committee]] (CFSAC) for the term June 2017 to June 2019. CFSAC, an advisory committee to the US Office of the Assistant Secretary for Health, allots three seats to patient advocacy groups.

===== NIH =====

===== FDA =====

===== AHRQ =====

===== WHO =====

===US Congressional Outreach===

===Medical & Scientific Fact Sheets===
*[http://www.meaction.net/wp-content/uploads/2018/10/Diagnosis-and-Management-of-Myalgic-Encephalomyelitis-MEAction.pdf Diagnosis & Management of ME] (2018)
*[https://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf #MEAction Research Summary] (2019)
*[https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020)
* [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] (May 2020)
* [https://www.meaction.net/resource/hospital-form/ Hospital Form] (May 2020)
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022)

* [[MEAction Reddit]]

==Online presence==

*[http://www.meaction.net/ Website]
*[http://twitter.com/MEActNet Twitter] /X
*[https://www.instagram.com/meactnet/ Instagram]
*[http://fb.com/meactnet Facebook]

== References ==
{{Reflist}}

[[Category:Patient groups]]
[[Category:American patient groups]]
[[Category:International patient groups]]
[[Category:Blogs]]

The MEAction Network

2024-04-22T23:47:15Z

JaimeS:/* Work on National and International Committees */ social media pages, created headings for other institutions

[[File:Meaction logo red.png|thumb]][http://www.meaction.net/ #MEAction] (The Myalgic Encephalomyelitis Action Network) is a worldwide [[ME/CFS]] patient advocacy group co-founded May 12, 2015 by [[Jennifer Brea]] and [[Beth Mazur]].

Its focus is on empowering patients to take action to improve the status of research and clinical care through nationally organized efforts with the support of local affiliate groups in countries around the world. #MEAction also runs special interest groups focused on science and research, public education and press relations.

==History==
<nowiki>#</nowiki>MEAction began in 2015 with co-founders [[Beth Mazur]] and [[Jennifer Brea|Jen Brea]]. In 2016, [[Ben Hsuborger]] was hired as Advocacy Director, [[Jaime Seltzer]] was hired as Managing Editor, and [[Adriane Tillman]]. Seltzer worked at the Stanford Genome Technology Center under [[Ronald Davis|Dr. Ron Davis]] before returning in 2018 in the role of Director of Scientific and Medical Outreach, later Scientific Director. [[Laurie Jones]] was brought on as Executive Director, [[Holly Lanham]] as Social Media Coordinator, [[Erin Roediger]] as Programs and Campaigns Director, [[Steven Moloney]] as Video and Communications Manager, and [[Marynka Marquez]] as Development Coordinator.

<nowiki>#</nowiki>MEAction began as a grassroots movement with the goal of making advocacy more accessible by leveraging technology that was not yet standard at the time, like videoconferencing software and Slack. In 2016, #MEAction formed the first #MillionsMissing protests. A 'test run' of #MillionsMissing ran in twelve cities worldwide in 2016; later in the same year, the protests expanded to include over a hundred events, local and virtual, to fight for better government research funding, accessible clinical care, and broader recognition of ME.<ref name=":1">{{Cite web|url=https://www.marieclaire.co.uk/reports/millionsmissing-campaign-me-595261|title=The important reason why people are leaving shoes around cities|last=Banach|first=Je|date=May 2018|website=Marie Claire}}</ref> MillionsMissing events continue today, with the 2024 efforts focused around medical education: the Teach ME, Treat ME initiative.<ref name=":2">{{Cite web|url=https://millionsmissing.meaction.net/mm24/|title=Teach ME, Treat ME|last=MEAction|date=January 2024|website=Millions Missing}}</ref>

==Notable projects==

==== PACE Trial Petition ====
MEAction's first major action as an organization was the PACE petition signed by 12,000 individuals,<ref name=":1" /> protesting the [[PACE trial]] and requesting retraction of the paper on grounds of unethical conduct. MEAction worked with [[David Tuller]] to obtain three dozen signatures from clinicians and researchers for an open letter asking the Lancet for an independent review of the PACE trial;

MEAction UK has demanded "an immediate end to the use of [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]."<ref name=":0">{{Cite news | url=https://www.meaction.net/2018/07/01/what-next-for-the-nice-guidelines/ | title = Parliament Plays NICE - #MEAction | last =#MEAction | first= | date = 2018-07-01|work=|access-date=2018-11-14|archive-url=|archive-date=|url-status=|language=en-US}}</ref> The [[United Kingdom|UK]] treatment guidelines for ME/CFS, known as the NICE guidelines are currently under review, but MEAction has demanded an interim change to the existing guidelines to stop the use of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) before the new guidelines are published.<ref name=":0" />
==== MillionsMissing ====
The [[Millions Missing protests]] were created by MEAction. Millions Missing (or #MillionsMissing) is an annual event or series of events that began at #MEAction as the idea of one advocate that grew into a concept adopted by ME organizations worldwide.

In discussions, ME advocates kept returning to the idea that [[post-exertional malaise]] (PEM) made it challenging if not impossible to protest in person. "Millions Missing" was a way to represent those who were too ill to protest, and those who had died due to complications of the disease.

==== MEpedia ====
[[MEpedia]] is a project founded by [[The MEAction Network]], powered by the patient community, and built by volunteers including patients, students, and researchers. It is a crowd-sourced knowledge base on the history, science and medicine of [[Myalgic encephalomyelitis|ME]], [[Chronic fatigue syndrome|CFS]], and [[related diseases]].

Currently, MEpedia has over 3,000 articles which have been viewed over 40 million times.

==== Medical Education ====

===== ''Unrest'' CME and Postcards to Doctors Initiative =====
In 2018, Jen Brea's documentary about ME from Shella Films, ''[[Unrest]]'', debuted. MEAction then worked with [[Lucinda Bateman|Dr. Lucinda Bateman]] and [[David Kaufman|Dr. David Kaufman]] to produce a short accompanying film about diagnosis and treatment for continuing education (CE, or CME) credits.<ref>{{Cite web|url=https://www.unrest.film/cme|title=Watch Unrest and Receive Continuing Medical Education (CME / CE) Credit|date=April 22, 2024|website=Unrest Continuing Medical Education}}</ref> These are credits required for medical providers to maintain their licenses in the United States. Then, MEAction launched the ''Postcards to Doctors'' campaign, in which members of the community sent hand-written postcards urging clinicians to take the CME and share it with others. The initiative ran in 2019 and 2020 and, as a result, over 700 medical providers took the ''Unrest'' CME.<ref name=":3">{{Cite web|url=https://www.meaction.net/2020/01/28/postcards-returns-2/|title=Celebrating Postcards To Doctors: Final Report|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=January 28, 2020|website=MEAction.net}}</ref> The rate of uptake for the Postcards initiative alone rivaled that of in-person offerings at conferences on ME/CFS,<ref name=":3" /> and the total number of providers who took the ''Unrest'' CME over its two-year run is many times the uptake for the average CME.<ref>{{Cite web|url=n/a|title=Interview re: CME uptake|last=Shumaker|first=Theresa|last2=Interviewer: Seltzer|first2=Jaime|date=April 17, 2024|quote="The articles [in Mayo Clinic Proceedings] are available for 2 years. The number of learners is so varied- anywhere from 12-70 MDs per year, and also a varied number of other health professionals for each article ( Nurses, PA, others)."}}</ref>

===== Long COVID CME =====
In 2020, #MEAction held two seminars at the start of the pandemic, one for medical providers<ref name=":4">{{Cite web|url=https://www.meaction.net/seminar/|title=Post-Viral ME/CFS: Diagnosing & treating ME/CFS in the time of COVID|last=MEAction|date=August 2020|website=MEAction.net}}</ref> and one for laypersons.<ref>{{Cite web|url=https://www.meaction.net/longcovid/|title=Long COVID Seminar, 2020|last=MEAction|date=May 2020|website=meaction.net}}</ref> The former was adapted to a presentation at the Rochester School of Medicine and Dentistry and offered for credit as part of Grand Rounds.<ref name=":4" />

===== Mayo Clinic Proceedings CME =====
In 2023, #MEAction produced a [https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext Concise Clinical Review in ''Mayo Clinic Proceedings''] as part of a grant from the Society to Improve Diagnosis in Medicine.<ref>{{Cite journal|title=Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2023-10|url=https://pubmed.ncbi.nlm.nih.gov/37793728/|journal=Mayo Clinic Proceedings|volume=98|issue=10|pages=1544–1551|last=Grach|first=Stephanie L.|last2=Seltzer|first2=Jaime|last3=Chon|first3=Tony Y.|last4=Ganesh|first4=Ravindra|doi=10.1016/j.mayocp.2023.07.032|pmid=37793728|issn=1942-5546}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/22/mayo-grant/|title=#MEAction & Mayo Win Grant For Diagnostic Improvement|last=MEAction|date=September 22, 2022}}</ref><ref>{{Cite web|url=https://www.improvediagnosis.org/dxqi-2022-grantees/|title=DxQI 2022 Grantees|website=Society to Improve Diagnosis in Medicine|language=en-US|access-date=2024-04-22}}</ref> This project also funded the co-creation of a diagnostic and treatment algorithm and edits to Mayo's public-facing page on ME/CFS.

===== Teach ME, Treat ME Initiative =====
MEAction's #TeachMETreatME (Teach ME, Treat ME) campaign in 2024 was built around in-person and virtual medical education events at university hospitals, medical systems, and other healthcare institutions.<ref name=":2" />

==== Long COVID and the SARS-CoV-2 Pandemic ====

===== Community Outreach and Materials =====
* [https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020) #MEAction knew a wave of disinformation was about to hit during the pandemic. In April 2020, #MEAction created a guide to spotting and responding to healthcare-related disinformation.
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022) In response to the likely surge of infection-associated chronic illness, #MEAction created a guide to pacing for the newly-diagnosed in early 2020. Subsequently, #MEAction partnered with Long COVID Families to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Pediatric Pacing Guide], and with the Patient-Led Research Collaborative (PLRC) to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Clinician's Pacing Guide]
* The Hospitalization Kit (May 2020) #MEAction created two handouts for people with ME who face hospitalization due to COVID infection, including the [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] and the [https://www.meaction.net/resource/hospital-form/ Hospital Form].

===== Pandemic Press Outreach =====
In addition, MEAction staff, including Scientific Director [[Jaime Seltzer]], Advocacy Director [[Ben Hsuborger]], and Public Relations Manager [[Adriane Tillman]] communicated with multiple news outlets regarding ME/CFS and Long COVID, including ''TIME, Rolling Stone, Infection Control Today, The Washington Post, The Atlantic, NPR, the LA Times, Medscape, Stat News, Muck Rock, National Geographic,'' and many other publications.<ref>{{Cite web|url=https://www.meaction.net/2020/06/09/meaction-gets-me-in-the-spotlight/|title=#MEAction Puts ME Into The Spotlight|last=MEAction|date=June 9, 2020|website=MEAction}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/20/millionsmissing-press-hits-rolling-in/|title=#MillionsMissing Press Hits Are Rolling In!|last=Tillman|first=Adriane|authorlink=Adriane Tillman|date=September 20, 2022|website=MEAction.net}}</ref><ref>{{Cite web|url=https://www.meaction.net/2023/06/06/why-we-keep-telling-the-story-of-me-to-the-press/|title=Why We Keep Telling The Story Of ME To The Press|last=MEAction|date=June 6, 2023|website=MEAction.net}}</ref> Advocated at #MEAction UK and state and local groups at #MEAction gained many press hits as well.<ref>{{Cite web|url=https://www.meaction.net/2020/11/03/long-covid-patients-warned-of-damaging-exercise-programme/|title=Long COVID Patients Warned Of Damaging Exercise Programme|last=MEAction|date=November 3, 2020|website=MEAction.net}}</ref>

== Work on National and International Committees ==

===== CDC =====
* MEAction representatives worked on a CDC committee to revamp their public-facing pages on ME/CFS in 2016; these changes were completed July 2018.<ref>{{Cite web|url=https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me|title=CDC Revises Its Information On ME|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=July 29, 2018|website=MEAction.net}}</ref><ref name=":5">[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref name=":6">[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref> #MEAction also surveyed the community for additional feedback on the site.
*

===== CFSAC =====
* MEAction became a non-voting liaison representative to the [[Chronic Fatigue Syndrome Advisory Committee]] (CFSAC) for the term June 2017 to June 2019. CFSAC, an advisory committee to the US Office of the Assistant Secretary for Health, allots three seats to patient advocacy groups.

===== NIH =====

===== FDA =====

===== AHRQ =====

===US Congressional Outreach===

===Medical & Scientific Fact Sheets===
*[http://www.meaction.net/wp-content/uploads/2018/10/Diagnosis-and-Management-of-Myalgic-Encephalomyelitis-MEAction.pdf Diagnosis & Management of ME] (2018)
*[https://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf #MEAction Research Summary] (2019)
*[https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020)
* [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] (May 2020)
* [https://www.meaction.net/resource/hospital-form/ Hospital Form] (May 2020)
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022)

* [[MEAction Reddit]]

==Online presence==

*[http://www.meaction.net/ Website]
*[http://twitter.com/MEActNet Twitter] /X
*[https://www.instagram.com/meactnet/ Instagram]
*[http://fb.com/meactnet Facebook]

== References ==
{{Reflist}}

[[Category:Patient groups]]
[[Category:American patient groups]]
[[Category:International patient groups]]
[[Category:Blogs]]

The MEAction Network

2024-04-22T23:42:23Z

JaimeS:/* Unrest CME and Postcards to Doctors Initiative * edited wording

[[File:Meaction logo red.png|thumb]][http://www.meaction.net/ #MEAction] (The Myalgic Encephalomyelitis Action Network) is a worldwide [[ME/CFS]] patient advocacy group co-founded May 12, 2015 by [[Jennifer Brea]] and [[Beth Mazur]].

Its focus is on empowering patients to take action to improve the status of research and clinical care through nationally organized efforts with the support of local affiliate groups in countries around the world. #MEAction also runs special interest groups focused on science and research, public education and press relations.

==History==
<nowiki>#</nowiki>MEAction began in 2015 with co-founders [[Beth Mazur]] and [[Jennifer Brea|Jen Brea]]. In 2016, [[Ben Hsuborger]] was hired as Advocacy Director, [[Jaime Seltzer]] was hired as Managing Editor, and [[Adriane Tillman]]. Seltzer worked at the Stanford Genome Technology Center under [[Ronald Davis|Dr. Ron Davis]] before returning in 2018 in the role of Director of Scientific and Medical Outreach, later Scientific Director. [[Laurie Jones]] was brought on as Executive Director, [[Holly Lanham]] as Social Media Coordinator, [[Erin Roediger]] as Programs and Campaigns Director, [[Steven Moloney]] as Video and Communications Manager, and [[Marynka Marquez]] as Development Coordinator.

<nowiki>#</nowiki>MEAction began as a grassroots movement with the goal of making advocacy more accessible by leveraging technology that was not yet standard at the time, like videoconferencing software and Slack. In 2016, #MEAction formed the first #MillionsMissing protests. A 'test run' of #MillionsMissing ran in twelve cities worldwide in 2016; later in the same year, the protests expanded to include over a hundred events, local and virtual, to fight for better government research funding, accessible clinical care, and broader recognition of ME.<ref name=":1">{{Cite web|url=https://www.marieclaire.co.uk/reports/millionsmissing-campaign-me-595261|title=The important reason why people are leaving shoes around cities|last=Banach|first=Je|date=May 2018|website=Marie Claire}}</ref> MillionsMissing events continue today, with the 2024 efforts focused around medical education: the Teach ME, Treat ME initiative.<ref name=":2">{{Cite web|url=https://millionsmissing.meaction.net/mm24/|title=Teach ME, Treat ME|last=MEAction|date=January 2024|website=Millions Missing}}</ref>

==Notable projects==

==== PACE Trial Petition ====
MEAction's first major action as an organization was the PACE petition signed by 12,000 individuals,<ref name=":1" /> protesting the [[PACE trial]] and requesting retraction of the paper on grounds of unethical conduct. MEAction worked with [[David Tuller]] to obtain three dozen signatures from clinicians and researchers for an open letter asking the Lancet for an independent review of the PACE trial;

MEAction UK has demanded "an immediate end to the use of [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]."<ref name=":0">{{Cite news | url=https://www.meaction.net/2018/07/01/what-next-for-the-nice-guidelines/ | title = Parliament Plays NICE - #MEAction | last =#MEAction | first= | date = 2018-07-01|work=|access-date=2018-11-14|archive-url=|archive-date=|url-status=|language=en-US}}</ref> The [[United Kingdom|UK]] treatment guidelines for ME/CFS, known as the NICE guidelines are currently under review, but MEAction has demanded an interim change to the existing guidelines to stop the use of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) before the new guidelines are published.<ref name=":0" />
==== MillionsMissing ====
The [[Millions Missing protests]] were created by MEAction. Millions Missing (or #MillionsMissing) is an annual event or series of events that began at #MEAction as the idea of one advocate that grew into a concept adopted by ME organizations worldwide.

In discussions, ME advocates kept returning to the idea that [[post-exertional malaise]] (PEM) made it challenging if not impossible to protest in person. "Millions Missing" was a way to represent those who were too ill to protest, and those who had died due to complications of the disease.

==== MEpedia ====
[[MEpedia]] is a project founded by [[The MEAction Network]], powered by the patient community, and built by volunteers including patients, students, and researchers. It is a crowd-sourced knowledge base on the history, science and medicine of [[Myalgic encephalomyelitis|ME]], [[Chronic fatigue syndrome|CFS]], and [[related diseases]].

Currently, MEpedia has over 3,000 articles which have been viewed over 40 million times.

==== Medical Education ====

===== ''Unrest'' CME and Postcards to Doctors Initiative =====
In 2018, Jen Brea's documentary about ME from Shella Films, ''[[Unrest]]'', debuted. MEAction then worked with [[Lucinda Bateman|Dr. Lucinda Bateman]] and [[David Kaufman|Dr. David Kaufman]] to produce a short accompanying film about diagnosis and treatment for continuing education (CE, or CME) credits.<ref>{{Cite web|url=https://www.unrest.film/cme|title=Watch Unrest and Receive Continuing Medical Education (CME / CE) Credit|date=April 22, 2024|website=Unrest Continuing Medical Education}}</ref> These are credits required for medical providers to maintain their licenses in the United States. Then, MEAction launched the ''Postcards to Doctors'' campaign, in which members of the community sent hand-written postcards urging clinicians to take the CME and share it with others. The initiative ran in 2019 and 2020 and, as a result, over 700 medical providers took the ''Unrest'' CME.<ref name=":3">{{Cite web|url=https://www.meaction.net/2020/01/28/postcards-returns-2/|title=Celebrating Postcards To Doctors: Final Report|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=January 28, 2020|website=MEAction.net}}</ref> The rate of uptake for the Postcards initiative alone rivaled that of in-person offerings at conferences on ME/CFS,<ref name=":3" /> and the total number of providers who took the ''Unrest'' CME over its two-year run is many times the uptake for the average CME.<ref>{{Cite web|url=n/a|title=Interview re: CME uptake|last=Shumaker|first=Theresa|last2=Interviewer: Seltzer|first2=Jaime|date=April 17, 2024|quote="The articles [in Mayo Clinic Proceedings] are available for 2 years. The number of learners is so varied- anywhere from 12-70 MDs per year, and also a varied number of other health professionals for each article ( Nurses, PA, others)."}}</ref>

===== Long COVID CME =====
In 2020, #MEAction held two seminars at the start of the pandemic, one for medical providers<ref name=":4">{{Cite web|url=https://www.meaction.net/seminar/|title=Post-Viral ME/CFS: Diagnosing & treating ME/CFS in the time of COVID|last=MEAction|date=August 2020|website=MEAction.net}}</ref> and one for laypersons.<ref>{{Cite web|url=https://www.meaction.net/longcovid/|title=Long COVID Seminar, 2020|last=MEAction|date=May 2020|website=meaction.net}}</ref> The former was adapted to a presentation at the Rochester School of Medicine and Dentistry and offered for credit as part of Grand Rounds.<ref name=":4" />

===== Mayo Clinic Proceedings CME =====
In 2023, #MEAction produced a [https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext Concise Clinical Review in ''Mayo Clinic Proceedings''] as part of a grant from the Society to Improve Diagnosis in Medicine.<ref>{{Cite journal|title=Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2023-10|url=https://pubmed.ncbi.nlm.nih.gov/37793728/|journal=Mayo Clinic Proceedings|volume=98|issue=10|pages=1544–1551|last=Grach|first=Stephanie L.|last2=Seltzer|first2=Jaime|last3=Chon|first3=Tony Y.|last4=Ganesh|first4=Ravindra|doi=10.1016/j.mayocp.2023.07.032|pmid=37793728|issn=1942-5546}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/22/mayo-grant/|title=#MEAction & Mayo Win Grant For Diagnostic Improvement|last=MEAction|date=September 22, 2022}}</ref><ref>{{Cite web|url=https://www.improvediagnosis.org/dxqi-2022-grantees/|title=DxQI 2022 Grantees|website=Society to Improve Diagnosis in Medicine|language=en-US|access-date=2024-04-22}}</ref> This project also funded the co-creation of a diagnostic and treatment algorithm and edits to Mayo's public-facing page on ME/CFS.

===== Teach ME, Treat ME Initiative =====
MEAction's #TeachMETreatME (Teach ME, Treat ME) campaign in 2024 was built around in-person and virtual medical education events at university hospitals, medical systems, and other healthcare institutions.<ref name=":2" />

==== Long COVID and the SARS-CoV-2 Pandemic ====

===== Community Outreach and Materials =====
* [https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020) #MEAction knew a wave of disinformation was about to hit during the pandemic. In April 2020, #MEAction created a guide to spotting and responding to healthcare-related disinformation.
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022) In response to the likely surge of infection-associated chronic illness, #MEAction created a guide to pacing for the newly-diagnosed in early 2020. Subsequently, #MEAction partnered with Long COVID Families to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Pediatric Pacing Guide], and with the Patient-Led Research Collaborative (PLRC) to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Clinician's Pacing Guide]
* The Hospitalization Kit (May 2020) #MEAction created two handouts for people with ME who face hospitalization due to COVID infection, including the [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] and the [https://www.meaction.net/resource/hospital-form/ Hospital Form].

===== Pandemic Press Outreach =====
In addition, MEAction staff, including Scientific Director [[Jaime Seltzer]], Advocacy Director [[Ben Hsuborger]], and Public Relations Manager [[Adriane Tillman]] communicated with multiple news outlets regarding ME/CFS and Long COVID, including ''TIME, Rolling Stone, Infection Control Today, The Washington Post, The Atlantic, NPR, the LA Times, Medscape, Stat News, Muck Rock, National Geographic,'' and many other publications.<ref>{{Cite web|url=https://www.meaction.net/2020/06/09/meaction-gets-me-in-the-spotlight/|title=#MEAction Puts ME Into The Spotlight|last=MEAction|date=June 9, 2020|website=MEAction}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/20/millionsmissing-press-hits-rolling-in/|title=#MillionsMissing Press Hits Are Rolling In!|last=Tillman|first=Adriane|authorlink=Adriane Tillman|date=September 20, 2022|website=MEAction.net}}</ref><ref>{{Cite web|url=https://www.meaction.net/2023/06/06/why-we-keep-telling-the-story-of-me-to-the-press/|title=Why We Keep Telling The Story Of ME To The Press|last=MEAction|date=June 6, 2023|website=MEAction.net}}</ref> Advocated at #MEAction UK and state and local groups at #MEAction gained many press hits as well.<ref>{{Cite web|url=https://www.meaction.net/2020/11/03/long-covid-patients-warned-of-damaging-exercise-programme/|title=Long COVID Patients Warned Of Damaging Exercise Programme|last=MEAction|date=November 3, 2020|website=MEAction.net}}</ref>

== Work on National and International Committees ==

===== CDC =====
* MEAction representatives worked on a CDC committee to revamp their public-facing pages on ME/CFS in 2016; these changes were completed July 2018.<ref>{{Cite web|url=https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me|title=CDC Revises Its Information On ME|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=July 29, 2018|website=MEAction.net}}</ref><ref name=":5" /><ref name=":6" /> #MEAction also surveyed the community for additional feedback on the site.
*

===== CFSAC =====
* MEAction became a non-voting liaison representative to the [[Chronic Fatigue Syndrome Advisory Committee]] (CFSAC) for the term June 2017 to June 2019. CFSAC, an advisory committee to the US Office of the Assistant Secretary for Health, allots three seats to patient advocacy groups.

*

==Actions==

===PACE trial===

===US Congressional Outreach===

=== Centers for Disease Control and Prevention (CDC) ===
*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/#comment-56411 CDC Revises its Information on ME] MEAction report on the [[Centers for Disease Control and Prevention|CDC]] July 2017 and July 2018 website updates.<ref name=":5">[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref name=":6">[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref> Recommendations for the CDC's ME/CFS page have been created from patient feedback on the updates as well as asking for further patient input.

==Tools==

===Petitions===

===Medical & Scientific Fact Sheets===
*[http://www.meaction.net/wp-content/uploads/2018/10/Diagnosis-and-Management-of-Myalgic-Encephalomyelitis-MEAction.pdf #MEAction handout on the Diagnosis & Management of ME]
*[https://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf #MEAction Research Summary (2019)]

==Organization==

==Learn more==

==See also==
* [[MEAction Reddit]]

==Online presence==

*[http://www.meaction.net/ Website]
*[http://twitter.com/MEActNet Twitter]
*[http://fb.com/meactnet Facebook]

== References ==
{{Reflist}}

[[Category:Patient groups]]
[[Category:American patient groups]]
[[Category:International patient groups]]
[[Category:Blogs]]

The MEAction Network

2024-04-22T23:41:16Z

JaimeS:/* History */ added link to Ron Davis

[[File:Meaction logo red.png|thumb]][http://www.meaction.net/ #MEAction] (The Myalgic Encephalomyelitis Action Network) is a worldwide [[ME/CFS]] patient advocacy group co-founded May 12, 2015 by [[Jennifer Brea]] and [[Beth Mazur]].

Its focus is on empowering patients to take action to improve the status of research and clinical care through nationally organized efforts with the support of local affiliate groups in countries around the world. #MEAction also runs special interest groups focused on science and research, public education and press relations.

==History==
<nowiki>#</nowiki>MEAction began in 2015 with co-founders [[Beth Mazur]] and [[Jennifer Brea|Jen Brea]]. In 2016, [[Ben Hsuborger]] was hired as Advocacy Director, [[Jaime Seltzer]] was hired as Managing Editor, and [[Adriane Tillman]]. Seltzer worked at the Stanford Genome Technology Center under [[Ronald Davis|Dr. Ron Davis]] before returning in 2018 in the role of Director of Scientific and Medical Outreach, later Scientific Director. [[Laurie Jones]] was brought on as Executive Director, [[Holly Lanham]] as Social Media Coordinator, [[Erin Roediger]] as Programs and Campaigns Director, [[Steven Moloney]] as Video and Communications Manager, and [[Marynka Marquez]] as Development Coordinator.

<nowiki>#</nowiki>MEAction began as a grassroots movement with the goal of making advocacy more accessible by leveraging technology that was not yet standard at the time, like videoconferencing software and Slack. In 2016, #MEAction formed the first #MillionsMissing protests. A 'test run' of #MillionsMissing ran in twelve cities worldwide in 2016; later in the same year, the protests expanded to include over a hundred events, local and virtual, to fight for better government research funding, accessible clinical care, and broader recognition of ME.<ref name=":1">{{Cite web|url=https://www.marieclaire.co.uk/reports/millionsmissing-campaign-me-595261|title=The important reason why people are leaving shoes around cities|last=Banach|first=Je|date=May 2018|website=Marie Claire}}</ref> MillionsMissing events continue today, with the 2024 efforts focused around medical education: the Teach ME, Treat ME initiative.<ref name=":2">{{Cite web|url=https://millionsmissing.meaction.net/mm24/|title=Teach ME, Treat ME|last=MEAction|date=January 2024|website=Millions Missing}}</ref>

==Notable projects==

==== PACE Trial Petition ====
MEAction's first major action as an organization was the PACE petition signed by 12,000 individuals,<ref name=":1" /> protesting the [[PACE trial]] and requesting retraction of the paper on grounds of unethical conduct. MEAction worked with [[David Tuller]] to obtain three dozen signatures from clinicians and researchers for an open letter asking the Lancet for an independent review of the PACE trial;

MEAction UK has demanded "an immediate end to the use of [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]."<ref name=":0">{{Cite news | url=https://www.meaction.net/2018/07/01/what-next-for-the-nice-guidelines/ | title = Parliament Plays NICE - #MEAction | last =#MEAction | first= | date = 2018-07-01|work=|access-date=2018-11-14|archive-url=|archive-date=|url-status=|language=en-US}}</ref> The [[United Kingdom|UK]] treatment guidelines for ME/CFS, known as the NICE guidelines are currently under review, but MEAction has demanded an interim change to the existing guidelines to stop the use of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) before the new guidelines are published.<ref name=":0" />
==== MillionsMissing ====
The [[Millions Missing protests]] were created by MEAction. Millions Missing (or #MillionsMissing) is an annual event or series of events that began at #MEAction as the idea of one advocate that grew into a concept adopted by ME organizations worldwide.

In discussions, ME advocates kept returning to the idea that [[post-exertional malaise]] (PEM) made it challenging if not impossible to protest in person. "Millions Missing" was a way to represent those who were too ill to protest, and those who had died due to complications of the disease.

==== MEpedia ====
[[MEpedia]] is a project founded by [[The MEAction Network]], powered by the patient community, and built by volunteers including patients, students, and researchers. It is a crowd-sourced knowledge base on the history, science and medicine of [[Myalgic encephalomyelitis|ME]], [[Chronic fatigue syndrome|CFS]], and [[related diseases]].

Currently, MEpedia has over 3,000 articles which have been viewed over 40 million times.

==== Medical Education ====

===== ''Unrest'' CME and Postcards to Doctors Initiative =====
In 2018, Jen Brea's documentary about ME from Shella Films, ''[[Unrest]]'', debuted. MEAction then worked with [[Lucinda Bateman|Dr. Lucinda Bateman]] and [[David Kaufman|Dr. David Kaufman]] to produce a short accompanying film about diagnosis and treatment for continuing education (CE, or CME) credits.<ref>{{Cite web|url=https://www.unrest.film/cme|title=Watch Unrest and Receive Continuing Medical Education (CME / CE) Credit|date=April 22, 2024|website=Unrest Continuing Medical Education}}</ref> These are credits required for medical providers to maintain their licenses in the United States. Then, MEAction launched the ''Postcards to Doctors'' campaign, in which members of the community sent hand-written postcards urging clinicians to take the CME and share it with others. The initiative ran in 2019 and 2020 and, as a result, over 700 medical providers took the ''Unrest'' CME.<ref name=":3">{{Cite web|url=https://www.meaction.net/2020/01/28/postcards-returns-2/|title=Celebrating Postcards To Doctors: Final Report|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=January 28, 2020|website=MEAction.net}}</ref> The rate of uptake for the Postcards initiative alone rivaled that of in-person offerings at conferences on ME/CFS,<ref name=":3" /> and the total number of providers who took the ''Unrest'' CME over its two-year run is many times the uptake for all-topic medical education.<ref>{{Cite web|url=n/a|title=Interview re: CME uptake|last=Shumaker|first=Theresa|last2=Interviewer: Seltzer|first2=Jaime|date=April 17, 2024|quote="The articles [in Mayo Clinic Proceedings] are available for 2 years. The number of learners is so varied- anywhere from 12-70 MDs per year, and also a varied number of other health professionals for each article ( Nurses, PA, others)."}}</ref>

===== Long COVID CME =====
In 2020, #MEAction held two seminars at the start of the pandemic, one for medical providers<ref name=":4">{{Cite web|url=https://www.meaction.net/seminar/|title=Post-Viral ME/CFS: Diagnosing & treating ME/CFS in the time of COVID|last=MEAction|date=August 2020|website=MEAction.net}}</ref> and one for laypersons.<ref>{{Cite web|url=https://www.meaction.net/longcovid/|title=Long COVID Seminar, 2020|last=MEAction|date=May 2020|website=meaction.net}}</ref> The former was adapted to a presentation at the Rochester School of Medicine and Dentistry and offered for credit as part of Grand Rounds.<ref name=":4" />

===== Mayo Clinic Proceedings CME =====
In 2023, #MEAction produced a [https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext Concise Clinical Review in ''Mayo Clinic Proceedings''] as part of a grant from the Society to Improve Diagnosis in Medicine.<ref>{{Cite journal|title=Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2023-10|url=https://pubmed.ncbi.nlm.nih.gov/37793728/|journal=Mayo Clinic Proceedings|volume=98|issue=10|pages=1544–1551|last=Grach|first=Stephanie L.|last2=Seltzer|first2=Jaime|last3=Chon|first3=Tony Y.|last4=Ganesh|first4=Ravindra|doi=10.1016/j.mayocp.2023.07.032|pmid=37793728|issn=1942-5546}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/22/mayo-grant/|title=#MEAction & Mayo Win Grant For Diagnostic Improvement|last=MEAction|date=September 22, 2022}}</ref><ref>{{Cite web|url=https://www.improvediagnosis.org/dxqi-2022-grantees/|title=DxQI 2022 Grantees|website=Society to Improve Diagnosis in Medicine|language=en-US|access-date=2024-04-22}}</ref> This project also funded the co-creation of a diagnostic and treatment algorithm and edits to Mayo's public-facing page on ME/CFS.

===== Teach ME, Treat ME Initiative =====
MEAction's #TeachMETreatME (Teach ME, Treat ME) campaign in 2024 was built around in-person and virtual medical education events at university hospitals, medical systems, and other healthcare institutions.<ref name=":2" />

==== Long COVID and the SARS-CoV-2 Pandemic ====

===== Community Outreach and Materials =====
* [https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020) #MEAction knew a wave of disinformation was about to hit during the pandemic. In April 2020, #MEAction created a guide to spotting and responding to healthcare-related disinformation.
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022) In response to the likely surge of infection-associated chronic illness, #MEAction created a guide to pacing for the newly-diagnosed in early 2020. Subsequently, #MEAction partnered with Long COVID Families to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Pediatric Pacing Guide], and with the Patient-Led Research Collaborative (PLRC) to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Clinician's Pacing Guide]
* The Hospitalization Kit (May 2020) #MEAction created two handouts for people with ME who face hospitalization due to COVID infection, including the [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] and the [https://www.meaction.net/resource/hospital-form/ Hospital Form].

===== Pandemic Press Outreach =====
In addition, MEAction staff, including Scientific Director [[Jaime Seltzer]], Advocacy Director [[Ben Hsuborger]], and Public Relations Manager [[Adriane Tillman]] communicated with multiple news outlets regarding ME/CFS and Long COVID, including ''TIME, Rolling Stone, Infection Control Today, The Washington Post, The Atlantic, NPR, the LA Times, Medscape, Stat News, Muck Rock, National Geographic,'' and many other publications.<ref>{{Cite web|url=https://www.meaction.net/2020/06/09/meaction-gets-me-in-the-spotlight/|title=#MEAction Puts ME Into The Spotlight|last=MEAction|date=June 9, 2020|website=MEAction}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/20/millionsmissing-press-hits-rolling-in/|title=#MillionsMissing Press Hits Are Rolling In!|last=Tillman|first=Adriane|authorlink=Adriane Tillman|date=September 20, 2022|website=MEAction.net}}</ref><ref>{{Cite web|url=https://www.meaction.net/2023/06/06/why-we-keep-telling-the-story-of-me-to-the-press/|title=Why We Keep Telling The Story Of ME To The Press|last=MEAction|date=June 6, 2023|website=MEAction.net}}</ref> Advocated at #MEAction UK and state and local groups at #MEAction gained many press hits as well.<ref>{{Cite web|url=https://www.meaction.net/2020/11/03/long-covid-patients-warned-of-damaging-exercise-programme/|title=Long COVID Patients Warned Of Damaging Exercise Programme|last=MEAction|date=November 3, 2020|website=MEAction.net}}</ref>

== Work on National and International Committees ==

===== CDC =====
* MEAction representatives worked on a CDC committee to revamp their public-facing pages on ME/CFS in 2016; these changes were completed July 2018.<ref>{{Cite web|url=https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me|title=CDC Revises Its Information On ME|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=July 29, 2018|website=MEAction.net}}</ref><ref name=":5" /><ref name=":6" /> #MEAction also surveyed the community for additional feedback on the site.
*

===== CFSAC =====
* MEAction became a non-voting liaison representative to the [[Chronic Fatigue Syndrome Advisory Committee]] (CFSAC) for the term June 2017 to June 2019. CFSAC, an advisory committee to the US Office of the Assistant Secretary for Health, allots three seats to patient advocacy groups.

*

==Actions==

===PACE trial===

===US Congressional Outreach===

=== Centers for Disease Control and Prevention (CDC) ===
*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/#comment-56411 CDC Revises its Information on ME] MEAction report on the [[Centers for Disease Control and Prevention|CDC]] July 2017 and July 2018 website updates.<ref name=":5">[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref name=":6">[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref> Recommendations for the CDC's ME/CFS page have been created from patient feedback on the updates as well as asking for further patient input.

==Tools==

===Petitions===

===Medical & Scientific Fact Sheets===
*[http://www.meaction.net/wp-content/uploads/2018/10/Diagnosis-and-Management-of-Myalgic-Encephalomyelitis-MEAction.pdf #MEAction handout on the Diagnosis & Management of ME]
*[https://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf #MEAction Research Summary (2019)]

==Organization==

==Learn more==

==See also==
* [[MEAction Reddit]]

==Online presence==

*[http://www.meaction.net/ Website]
*[http://twitter.com/MEActNet Twitter]
*[http://fb.com/meactnet Facebook]

== References ==
{{Reflist}}

[[Category:Patient groups]]
[[Category:American patient groups]]
[[Category:International patient groups]]
[[Category:Blogs]]

The MEAction Network

2024-04-22T23:40:36Z

JaimeS:/* Mayo Clinic Proceedings CME */ citations

[[File:Meaction logo red.png|thumb]][http://www.meaction.net/ #MEAction] (The Myalgic Encephalomyelitis Action Network) is a worldwide [[ME/CFS]] patient advocacy group co-founded May 12, 2015 by [[Jennifer Brea]] and [[Beth Mazur]].

Its focus is on empowering patients to take action to improve the status of research and clinical care through nationally organized efforts with the support of local affiliate groups in countries around the world. #MEAction also runs special interest groups focused on science and research, public education and press relations.

==History==
<nowiki>#</nowiki>MEAction began in 2015 with co-founders [[Beth Mazur]] and [[Jennifer Brea|Jen Brea]]. In 2016, [[Ben Hsuborger]] was hired as Advocacy Director, [[Jaime Seltzer]] was hired as Managing Editor, and [[Adriane Tillman]]. Seltzer worked at the Stanford Genome Technology Center under Dr. Ron Davis before returning in 2018 in the role of Director of Scientific and Medical Outreach, later Scientific Director. [[Laurie Jones]] was brought on as Executive Director, [[Holly Lanham]] as Social Media Coordinator, [[Erin Roediger]] as Programs and Campaigns Director, [[Steven Moloney]] as Video and Communications Manager, and [[Marynka Marquez]] as Development Coordinator.

<nowiki>#</nowiki>MEAction began as a grassroots movement with the goal of making advocacy more accessible by leveraging technology that was not yet standard at the time, like videoconferencing software and Slack. In 2016, #MEAction formed the first #MillionsMissing protests. A 'test run' of #MillionsMissing ran in twelve cities worldwide in 2016; later in the same year, the protests expanded to include over a hundred events, local and virtual, to fight for better government research funding, accessible clinical care, and broader recognition of ME.<ref name=":1">{{Cite web|url=https://www.marieclaire.co.uk/reports/millionsmissing-campaign-me-595261|title=The important reason why people are leaving shoes around cities|last=Banach|first=Je|date=May 2018|website=Marie Claire}}</ref> MillionsMissing events continue today, with the 2024 efforts focused around medical education: the Teach ME, Treat ME initiative.<ref name=":2">{{Cite web|url=https://millionsmissing.meaction.net/mm24/|title=Teach ME, Treat ME|last=MEAction|date=January 2024|website=Millions Missing}}</ref>

==Notable projects==

==== PACE Trial Petition ====
MEAction's first major action as an organization was the PACE petition signed by 12,000 individuals,<ref name=":1" /> protesting the [[PACE trial]] and requesting retraction of the paper on grounds of unethical conduct. MEAction worked with [[David Tuller]] to obtain three dozen signatures from clinicians and researchers for an open letter asking the Lancet for an independent review of the PACE trial;

MEAction UK has demanded "an immediate end to the use of [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]."<ref name=":0">{{Cite news | url=https://www.meaction.net/2018/07/01/what-next-for-the-nice-guidelines/ | title = Parliament Plays NICE - #MEAction | last =#MEAction | first= | date = 2018-07-01|work=|access-date=2018-11-14|archive-url=|archive-date=|url-status=|language=en-US}}</ref> The [[United Kingdom|UK]] treatment guidelines for ME/CFS, known as the NICE guidelines are currently under review, but MEAction has demanded an interim change to the existing guidelines to stop the use of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) before the new guidelines are published.<ref name=":0" />
==== MillionsMissing ====
The [[Millions Missing protests]] were created by MEAction. Millions Missing (or #MillionsMissing) is an annual event or series of events that began at #MEAction as the idea of one advocate that grew into a concept adopted by ME organizations worldwide.

In discussions, ME advocates kept returning to the idea that [[post-exertional malaise]] (PEM) made it challenging if not impossible to protest in person. "Millions Missing" was a way to represent those who were too ill to protest, and those who had died due to complications of the disease.

==== MEpedia ====
[[MEpedia]] is a project founded by [[The MEAction Network]], powered by the patient community, and built by volunteers including patients, students, and researchers. It is a crowd-sourced knowledge base on the history, science and medicine of [[Myalgic encephalomyelitis|ME]], [[Chronic fatigue syndrome|CFS]], and [[related diseases]].

Currently, MEpedia has over 3,000 articles which have been viewed over 40 million times.

==== Medical Education ====

===== ''Unrest'' CME and Postcards to Doctors Initiative =====
In 2018, Jen Brea's documentary about ME from Shella Films, ''[[Unrest]]'', debuted. MEAction then worked with [[Lucinda Bateman|Dr. Lucinda Bateman]] and [[David Kaufman|Dr. David Kaufman]] to produce a short accompanying film about diagnosis and treatment for continuing education (CE, or CME) credits.<ref>{{Cite web|url=https://www.unrest.film/cme|title=Watch Unrest and Receive Continuing Medical Education (CME / CE) Credit|date=April 22, 2024|website=Unrest Continuing Medical Education}}</ref> These are credits required for medical providers to maintain their licenses in the United States. Then, MEAction launched the ''Postcards to Doctors'' campaign, in which members of the community sent hand-written postcards urging clinicians to take the CME and share it with others. The initiative ran in 2019 and 2020 and, as a result, over 700 medical providers took the ''Unrest'' CME.<ref name=":3">{{Cite web|url=https://www.meaction.net/2020/01/28/postcards-returns-2/|title=Celebrating Postcards To Doctors: Final Report|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=January 28, 2020|website=MEAction.net}}</ref> The rate of uptake for the Postcards initiative alone rivaled that of in-person offerings at conferences on ME/CFS,<ref name=":3" /> and the total number of providers who took the ''Unrest'' CME over its two-year run is many times the uptake for all-topic medical education.<ref>{{Cite web|url=n/a|title=Interview re: CME uptake|last=Shumaker|first=Theresa|last2=Interviewer: Seltzer|first2=Jaime|date=April 17, 2024|quote="The articles [in Mayo Clinic Proceedings] are available for 2 years. The number of learners is so varied- anywhere from 12-70 MDs per year, and also a varied number of other health professionals for each article ( Nurses, PA, others)."}}</ref>

===== Long COVID CME =====
In 2020, #MEAction held two seminars at the start of the pandemic, one for medical providers<ref name=":4">{{Cite web|url=https://www.meaction.net/seminar/|title=Post-Viral ME/CFS: Diagnosing & treating ME/CFS in the time of COVID|last=MEAction|date=August 2020|website=MEAction.net}}</ref> and one for laypersons.<ref>{{Cite web|url=https://www.meaction.net/longcovid/|title=Long COVID Seminar, 2020|last=MEAction|date=May 2020|website=meaction.net}}</ref> The former was adapted to a presentation at the Rochester School of Medicine and Dentistry and offered for credit as part of Grand Rounds.<ref name=":4" />

===== Mayo Clinic Proceedings CME =====
In 2023, #MEAction produced a [https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext Concise Clinical Review in ''Mayo Clinic Proceedings''] as part of a grant from the Society to Improve Diagnosis in Medicine.<ref>{{Cite journal|title=Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|date=2023-10|url=https://pubmed.ncbi.nlm.nih.gov/37793728/|journal=Mayo Clinic Proceedings|volume=98|issue=10|pages=1544–1551|last=Grach|first=Stephanie L.|last2=Seltzer|first2=Jaime|last3=Chon|first3=Tony Y.|last4=Ganesh|first4=Ravindra|doi=10.1016/j.mayocp.2023.07.032|pmid=37793728|issn=1942-5546}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/22/mayo-grant/|title=#MEAction & Mayo Win Grant For Diagnostic Improvement|last=MEAction|date=September 22, 2022}}</ref><ref>{{Cite web|url=https://www.improvediagnosis.org/dxqi-2022-grantees/|title=DxQI 2022 Grantees|website=Society to Improve Diagnosis in Medicine|language=en-US|access-date=2024-04-22}}</ref> This project also funded the co-creation of a diagnostic and treatment algorithm and edits to Mayo's public-facing page on ME/CFS.

===== Teach ME, Treat ME Initiative =====
MEAction's #TeachMETreatME (Teach ME, Treat ME) campaign in 2024 was built around in-person and virtual medical education events at university hospitals, medical systems, and other healthcare institutions.<ref name=":2" />

==== Long COVID and the SARS-CoV-2 Pandemic ====

===== Community Outreach and Materials =====
* [https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020) #MEAction knew a wave of disinformation was about to hit during the pandemic. In April 2020, #MEAction created a guide to spotting and responding to healthcare-related disinformation.
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022) In response to the likely surge of infection-associated chronic illness, #MEAction created a guide to pacing for the newly-diagnosed in early 2020. Subsequently, #MEAction partnered with Long COVID Families to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Pediatric Pacing Guide], and with the Patient-Led Research Collaborative (PLRC) to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Clinician's Pacing Guide]
* The Hospitalization Kit (May 2020) #MEAction created two handouts for people with ME who face hospitalization due to COVID infection, including the [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] and the [https://www.meaction.net/resource/hospital-form/ Hospital Form].

===== Pandemic Press Outreach =====
In addition, MEAction staff, including Scientific Director [[Jaime Seltzer]], Advocacy Director [[Ben Hsuborger]], and Public Relations Manager [[Adriane Tillman]] communicated with multiple news outlets regarding ME/CFS and Long COVID, including ''TIME, Rolling Stone, Infection Control Today, The Washington Post, The Atlantic, NPR, the LA Times, Medscape, Stat News, Muck Rock, National Geographic,'' and many other publications.<ref>{{Cite web|url=https://www.meaction.net/2020/06/09/meaction-gets-me-in-the-spotlight/|title=#MEAction Puts ME Into The Spotlight|last=MEAction|date=June 9, 2020|website=MEAction}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/20/millionsmissing-press-hits-rolling-in/|title=#MillionsMissing Press Hits Are Rolling In!|last=Tillman|first=Adriane|authorlink=Adriane Tillman|date=September 20, 2022|website=MEAction.net}}</ref><ref>{{Cite web|url=https://www.meaction.net/2023/06/06/why-we-keep-telling-the-story-of-me-to-the-press/|title=Why We Keep Telling The Story Of ME To The Press|last=MEAction|date=June 6, 2023|website=MEAction.net}}</ref> Advocated at #MEAction UK and state and local groups at #MEAction gained many press hits as well.<ref>{{Cite web|url=https://www.meaction.net/2020/11/03/long-covid-patients-warned-of-damaging-exercise-programme/|title=Long COVID Patients Warned Of Damaging Exercise Programme|last=MEAction|date=November 3, 2020|website=MEAction.net}}</ref>

== Work on National and International Committees ==

===== CDC =====
* MEAction representatives worked on a CDC committee to revamp their public-facing pages on ME/CFS in 2016; these changes were completed July 2018.<ref>{{Cite web|url=https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me|title=CDC Revises Its Information On ME|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=July 29, 2018|website=MEAction.net}}</ref><ref name=":5" /><ref name=":6" /> #MEAction also surveyed the community for additional feedback on the site.
*

===== CFSAC =====
* MEAction became a non-voting liaison representative to the [[Chronic Fatigue Syndrome Advisory Committee]] (CFSAC) for the term June 2017 to June 2019. CFSAC, an advisory committee to the US Office of the Assistant Secretary for Health, allots three seats to patient advocacy groups.

*

==Actions==

===PACE trial===

===US Congressional Outreach===

=== Centers for Disease Control and Prevention (CDC) ===
*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/#comment-56411 CDC Revises its Information on ME] MEAction report on the [[Centers for Disease Control and Prevention|CDC]] July 2017 and July 2018 website updates.<ref name=":5">[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref name=":6">[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref> Recommendations for the CDC's ME/CFS page have been created from patient feedback on the updates as well as asking for further patient input.

==Tools==

===Petitions===

===Medical & Scientific Fact Sheets===
*[http://www.meaction.net/wp-content/uploads/2018/10/Diagnosis-and-Management-of-Myalgic-Encephalomyelitis-MEAction.pdf #MEAction handout on the Diagnosis & Management of ME]
*[https://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf #MEAction Research Summary (2019)]

==Organization==

==Learn more==

==See also==
* [[MEAction Reddit]]

==Online presence==

*[http://www.meaction.net/ Website]
*[http://twitter.com/MEActNet Twitter]
*[http://fb.com/meactnet Facebook]

== References ==
{{Reflist}}

[[Category:Patient groups]]
[[Category:American patient groups]]
[[Category:International patient groups]]
[[Category:Blogs]]

The MEAction Network

2024-04-22T23:35:27Z

JaimeS:/* Work on National and International Committees */ still mostly rearranging, but added some more references.

[[File:Meaction logo red.png|thumb]][http://www.meaction.net/ #MEAction] (The Myalgic Encephalomyelitis Action Network) is a worldwide [[ME/CFS]] patient advocacy group co-founded May 12, 2015 by [[Jennifer Brea]] and [[Beth Mazur]].

Its focus is on empowering patients to take action to improve the status of research and clinical care through nationally organized efforts with the support of local affiliate groups in countries around the world. #MEAction also runs special interest groups focused on science and research, public education and press relations.

==History==
<nowiki>#</nowiki>MEAction began in 2015 with co-founders [[Beth Mazur]] and [[Jennifer Brea|Jen Brea]]. In 2016, [[Ben Hsuborger]] was hired as Advocacy Director, [[Jaime Seltzer]] was hired as Managing Editor, and [[Adriane Tillman]]. Seltzer worked at the Stanford Genome Technology Center under Dr. Ron Davis before returning in 2018 in the role of Director of Scientific and Medical Outreach, later Scientific Director. [[Laurie Jones]] was brought on as Executive Director, [[Holly Lanham]] as Social Media Coordinator, [[Erin Roediger]] as Programs and Campaigns Director, [[Steven Moloney]] as Video and Communications Manager, and [[Marynka Marquez]] as Development Coordinator.

<nowiki>#</nowiki>MEAction began as a grassroots movement with the goal of making advocacy more accessible by leveraging technology that was not yet standard at the time, like videoconferencing software and Slack. In 2016, #MEAction formed the first #MillionsMissing protests. A 'test run' of #MillionsMissing ran in twelve cities worldwide in 2016; later in the same year, the protests expanded to include over a hundred events, local and virtual, to fight for better government research funding, accessible clinical care, and broader recognition of ME.<ref name=":1">{{Cite web|url=https://www.marieclaire.co.uk/reports/millionsmissing-campaign-me-595261|title=The important reason why people are leaving shoes around cities|last=Banach|first=Je|date=May 2018|website=Marie Claire}}</ref> MillionsMissing events continue today, with the 2024 efforts focused around medical education: the Teach ME, Treat ME initiative.<ref name=":2">{{Cite web|url=https://millionsmissing.meaction.net/mm24/|title=Teach ME, Treat ME|last=MEAction|date=January 2024|website=Millions Missing}}</ref>

==Notable projects==

==== PACE Trial Petition ====
MEAction's first major action as an organization was the PACE petition signed by 12,000 individuals,<ref name=":1" /> protesting the [[PACE trial]] and requesting retraction of the paper on grounds of unethical conduct. MEAction worked with [[David Tuller]] to obtain three dozen signatures from clinicians and researchers for an open letter asking the Lancet for an independent review of the PACE trial;

MEAction UK has demanded "an immediate end to the use of [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]."<ref name=":0">{{Cite news | url=https://www.meaction.net/2018/07/01/what-next-for-the-nice-guidelines/ | title = Parliament Plays NICE - #MEAction | last =#MEAction | first= | date = 2018-07-01|work=|access-date=2018-11-14|archive-url=|archive-date=|url-status=|language=en-US}}</ref> The [[United Kingdom|UK]] treatment guidelines for ME/CFS, known as the NICE guidelines are currently under review, but MEAction has demanded an interim change to the existing guidelines to stop the use of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) before the new guidelines are published.<ref name=":0" />
==== MillionsMissing ====
The [[Millions Missing protests]] were created by MEAction. Millions Missing (or #MillionsMissing) is an annual event or series of events that began at #MEAction as the idea of one advocate that grew into a concept adopted by ME organizations worldwide.

In discussions, ME advocates kept returning to the idea that [[post-exertional malaise]] (PEM) made it challenging if not impossible to protest in person. "Millions Missing" was a way to represent those who were too ill to protest, and those who had died due to complications of the disease.

==== MEpedia ====
[[MEpedia]] is a project founded by [[The MEAction Network]], powered by the patient community, and built by volunteers including patients, students, and researchers. It is a crowd-sourced knowledge base on the history, science and medicine of [[Myalgic encephalomyelitis|ME]], [[Chronic fatigue syndrome|CFS]], and [[related diseases]].

Currently, MEpedia has over 3,000 articles which have been viewed over 40 million times.

==== Medical Education ====

===== ''Unrest'' CME and Postcards to Doctors Initiative =====
In 2018, Jen Brea's documentary about ME from Shella Films, ''[[Unrest]]'', debuted. MEAction then worked with [[Lucinda Bateman|Dr. Lucinda Bateman]] and [[David Kaufman|Dr. David Kaufman]] to produce a short accompanying film about diagnosis and treatment for continuing education (CE, or CME) credits.<ref>{{Cite web|url=https://www.unrest.film/cme|title=Watch Unrest and Receive Continuing Medical Education (CME / CE) Credit|date=April 22, 2024|website=Unrest Continuing Medical Education}}</ref> These are credits required for medical providers to maintain their licenses in the United States. Then, MEAction launched the ''Postcards to Doctors'' campaign, in which members of the community sent hand-written postcards urging clinicians to take the CME and share it with others. The initiative ran in 2019 and 2020 and, as a result, over 700 medical providers took the ''Unrest'' CME.<ref name=":3">{{Cite web|url=https://www.meaction.net/2020/01/28/postcards-returns-2/|title=Celebrating Postcards To Doctors: Final Report|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=January 28, 2020|website=MEAction.net}}</ref> The rate of uptake for the Postcards initiative alone rivaled that of in-person offerings at conferences on ME/CFS,<ref name=":3" /> and the total number of providers who took the ''Unrest'' CME over its two-year run is many times the uptake for all-topic medical education.<ref>{{Cite web|url=n/a|title=Interview re: CME uptake|last=Shumaker|first=Theresa|last2=Interviewer: Seltzer|first2=Jaime|date=April 17, 2024|quote="The articles [in Mayo Clinic Proceedings] are available for 2 years. The number of learners is so varied- anywhere from 12-70 MDs per year, and also a varied number of other health professionals for each article ( Nurses, PA, others)."}}</ref>

===== Long COVID CME =====
In 2020, #MEAction held two seminars at the start of the pandemic, one for medical providers<ref name=":4">{{Cite web|url=https://www.meaction.net/seminar/|title=Post-Viral ME/CFS: Diagnosing & treating ME/CFS in the time of COVID|last=MEAction|date=August 2020|website=MEAction.net}}</ref> and one for laypersons.<ref>{{Cite web|url=https://www.meaction.net/longcovid/|title=Long COVID Seminar, 2020|last=MEAction|date=May 2020|website=meaction.net}}</ref> The former was adapted to a presentation at the Rochester School of Medicine and Dentistry and offered for credit as part of Grand Rounds.<ref name=":4" />

===== Mayo Clinic Proceedings CME =====
In 2023, #MEAction produced a [https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext Concise Clinical Review in ''Mayo Clinic Proceedings''] as part of a grant from the Society to Improve Diagnosis in Medicine. This project also funded the co-creation of a diagnostic and treatment algorithm and edits to Mayo's public-facing page on ME/CFS.

===== Teach ME, Treat ME Initiative =====
MEAction's #TeachMETreatME (Teach ME, Treat ME) campaign in 2024 was built around in-person and virtual medical education events at university hospitals, medical systems, and other healthcare institutions.<ref name=":2" />

==== Long COVID and the SARS-CoV-2 Pandemic ====

===== Community Outreach and Materials =====
* [https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020) #MEAction knew a wave of disinformation was about to hit during the pandemic. In April 2020, #MEAction created a guide to spotting and responding to healthcare-related disinformation.
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022) In response to the likely surge of infection-associated chronic illness, #MEAction created a guide to pacing for the newly-diagnosed in early 2020. Subsequently, #MEAction partnered with Long COVID Families to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Pediatric Pacing Guide], and with the Patient-Led Research Collaborative (PLRC) to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Clinician's Pacing Guide]
* The Hospitalization Kit (May 2020) #MEAction created two handouts for people with ME who face hospitalization due to COVID infection, including the [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] and the [https://www.meaction.net/resource/hospital-form/ Hospital Form].

===== Pandemic Press Outreach =====
In addition, MEAction staff, including Scientific Director [[Jaime Seltzer]], Advocacy Director [[Ben Hsuborger]], and Public Relations Manager [[Adriane Tillman]] communicated with multiple news outlets regarding ME/CFS and Long COVID, including ''TIME, Rolling Stone, Infection Control Today, The Washington Post, The Atlantic, NPR, the LA Times, Medscape, Stat News, Muck Rock, National Geographic,'' and many other publications.<ref>{{Cite web|url=https://www.meaction.net/2020/06/09/meaction-gets-me-in-the-spotlight/|title=#MEAction Puts ME Into The Spotlight|last=MEAction|date=June 9, 2020|website=MEAction}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/20/millionsmissing-press-hits-rolling-in/|title=#MillionsMissing Press Hits Are Rolling In!|last=Tillman|first=Adriane|authorlink=Adriane Tillman|date=September 20, 2022|website=MEAction.net}}</ref><ref>{{Cite web|url=https://www.meaction.net/2023/06/06/why-we-keep-telling-the-story-of-me-to-the-press/|title=Why We Keep Telling The Story Of ME To The Press|last=MEAction|date=June 6, 2023|website=MEAction.net}}</ref> Advocated at #MEAction UK and state and local groups at #MEAction gained many press hits as well.<ref>{{Cite web|url=https://www.meaction.net/2020/11/03/long-covid-patients-warned-of-damaging-exercise-programme/|title=Long COVID Patients Warned Of Damaging Exercise Programme|last=MEAction|date=November 3, 2020|website=MEAction.net}}</ref>

== Work on National and International Committees ==

===== CDC =====
* MEAction representatives worked on a CDC committee to revamp their public-facing pages on ME/CFS in 2016; these changes were completed July 2018.<ref>{{Cite web|url=https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me|title=CDC Revises Its Information On ME|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=July 29, 2018|website=MEAction.net}}</ref><ref name=":5" /><ref name=":6" /> #MEAction also surveyed the community for additional feedback on the site.
*

===== CFSAC =====
* MEAction became a non-voting liaison representative to the [[Chronic Fatigue Syndrome Advisory Committee]] (CFSAC) for the term June 2017 to June 2019. CFSAC, an advisory committee to the US Office of the Assistant Secretary for Health, allots three seats to patient advocacy groups.

*

==Actions==

===PACE trial===

===US Congressional Outreach===

=== Centers for Disease Control and Prevention (CDC) ===
*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/#comment-56411 CDC Revises its Information on ME] MEAction report on the [[Centers for Disease Control and Prevention|CDC]] July 2017 and July 2018 website updates.<ref name=":5">[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref name=":6">[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref> Recommendations for the CDC's ME/CFS page have been created from patient feedback on the updates as well as asking for further patient input.

==Tools==

===Petitions===

===Medical & Scientific Fact Sheets===
*[http://www.meaction.net/wp-content/uploads/2018/10/Diagnosis-and-Management-of-Myalgic-Encephalomyelitis-MEAction.pdf #MEAction handout on the Diagnosis & Management of ME]
*[https://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf #MEAction Research Summary (2019)]

==Organization==

==Learn more==

==See also==
* [[MEAction Reddit]]

==Online presence==

*[http://www.meaction.net/ Website]
*[http://twitter.com/MEActNet Twitter]
*[http://fb.com/meactnet Facebook]

== References ==
{{Reflist}}

[[Category:Patient groups]]
[[Category:American patient groups]]
[[Category:International patient groups]]
[[Category:Blogs]]

The MEAction Network

2024-04-22T23:28:15Z

JaimeS:/* Medical Education */ subheadings added

[[File:Meaction logo red.png|thumb]][http://www.meaction.net/ #MEAction] (The Myalgic Encephalomyelitis Action Network) is a worldwide [[ME/CFS]] patient advocacy group co-founded May 12, 2015 by [[Jennifer Brea]] and [[Beth Mazur]].

Its focus is on empowering patients to take action to improve the status of research and clinical care through nationally organized efforts with the support of local affiliate groups in countries around the world. #MEAction also runs special interest groups focused on science and research, public education and press relations.

==History==
<nowiki>#</nowiki>MEAction began in 2015 with co-founders [[Beth Mazur]] and [[Jennifer Brea|Jen Brea]]. In 2016, [[Ben Hsuborger]] was hired as Advocacy Director, [[Jaime Seltzer]] was hired as Managing Editor, and [[Adriane Tillman]]. Seltzer worked at the Stanford Genome Technology Center under Dr. Ron Davis before returning in 2018 in the role of Director of Scientific and Medical Outreach, later Scientific Director. [[Laurie Jones]] was brought on as Executive Director, [[Holly Lanham]] as Social Media Coordinator, [[Erin Roediger]] as Programs and Campaigns Director, [[Steven Moloney]] as Video and Communications Manager, and [[Marynka Marquez]] as Development Coordinator.

<nowiki>#</nowiki>MEAction began as a grassroots movement with the goal of making advocacy more accessible by leveraging technology that was not yet standard at the time, like videoconferencing software and Slack. In 2016, #MEAction formed the first #MillionsMissing protests. A 'test run' of #MillionsMissing ran in twelve cities worldwide in 2016; later in the same year, the protests expanded to include over a hundred events, local and virtual, to fight for better government research funding, accessible clinical care, and broader recognition of ME.<ref name=":1">{{Cite web|url=https://www.marieclaire.co.uk/reports/millionsmissing-campaign-me-595261|title=The important reason why people are leaving shoes around cities|last=Banach|first=Je|date=May 2018|website=Marie Claire}}</ref> MillionsMissing events continue today, with the 2024 efforts focused around medical education: the Teach ME, Treat ME initiative.<ref name=":2">{{Cite web|url=https://millionsmissing.meaction.net/mm24/|title=Teach ME, Treat ME|last=MEAction|date=January 2024|website=Millions Missing}}</ref>

==Notable projects==

==== PACE Trial Petition ====
MEAction's first major action as an organization was the PACE petition signed by 12,000 individuals,<ref name=":1" /> protesting the [[PACE trial]] and requesting retraction of the paper on grounds of unethical conduct. MEAction worked with [[David Tuller]] to obtain three dozen signatures from clinicians and researchers for an open letter asking the Lancet for an independent review of the PACE trial;

MEAction UK has demanded "an immediate end to the use of [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]."<ref name=":0">{{Cite news | url=https://www.meaction.net/2018/07/01/what-next-for-the-nice-guidelines/ | title = Parliament Plays NICE - #MEAction | last =#MEAction | first= | date = 2018-07-01|work=|access-date=2018-11-14|archive-url=|archive-date=|url-status=|language=en-US}}</ref> The [[United Kingdom|UK]] treatment guidelines for ME/CFS, known as the NICE guidelines are currently under review, but MEAction has demanded an interim change to the existing guidelines to stop the use of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) before the new guidelines are published.<ref name=":0" />
==== MillionsMissing ====
The [[Millions Missing protests]] were created by MEAction. Millions Missing (or #MillionsMissing) is an annual event or series of events that began at #MEAction as the idea of one advocate that grew into a concept adopted by ME organizations worldwide.

In discussions, ME advocates kept returning to the idea that [[post-exertional malaise]] (PEM) made it challenging if not impossible to protest in person. "Millions Missing" was a way to represent those who were too ill to protest, and those who had died due to complications of the disease.

==== MEpedia ====
[[MEpedia]] is a project founded by [[The MEAction Network]], powered by the patient community, and built by volunteers including patients, students, and researchers. It is a crowd-sourced knowledge base on the history, science and medicine of [[Myalgic encephalomyelitis|ME]], [[Chronic fatigue syndrome|CFS]], and [[related diseases]].

Currently, MEpedia has over 3,000 articles which have been viewed over 40 million times.

==== Medical Education ====

===== ''Unrest'' CME and Postcards to Doctors Initiative =====
In 2018, Jen Brea's documentary about ME from Shella Films, ''[[Unrest]]'', debuted. MEAction then worked with [[Lucinda Bateman|Dr. Lucinda Bateman]] and [[David Kaufman|Dr. David Kaufman]] to produce a short accompanying film about diagnosis and treatment for continuing education (CE, or CME) credits.<ref>{{Cite web|url=https://www.unrest.film/cme|title=Watch Unrest and Receive Continuing Medical Education (CME / CE) Credit|date=April 22, 2024|website=Unrest Continuing Medical Education}}</ref> These are credits required for medical providers to maintain their licenses in the United States. Then, MEAction launched the ''Postcards to Doctors'' campaign, in which members of the community sent hand-written postcards urging clinicians to take the CME and share it with others. The initiative ran in 2019 and 2020 and, as a result, over 700 medical providers took the ''Unrest'' CME.<ref name=":3">{{Cite web|url=https://www.meaction.net/2020/01/28/postcards-returns-2/|title=Celebrating Postcards To Doctors: Final Report|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=January 28, 2020|website=MEAction.net}}</ref> The rate of uptake for the Postcards initiative alone rivaled that of in-person offerings at conferences on ME/CFS,<ref name=":3" /> and the total number of providers who took the ''Unrest'' CME over its two-year run is many times the uptake for all-topic medical education.<ref>{{Cite web|url=n/a|title=Interview re: CME uptake|last=Shumaker|first=Theresa|last2=Interviewer: Seltzer|first2=Jaime|date=April 17, 2024|quote="The articles [in Mayo Clinic Proceedings] are available for 2 years. The number of learners is so varied- anywhere from 12-70 MDs per year, and also a varied number of other health professionals for each article ( Nurses, PA, others)."}}</ref>

===== Long COVID CME =====
In 2020, #MEAction held two seminars at the start of the pandemic, one for medical providers<ref name=":4">{{Cite web|url=https://www.meaction.net/seminar/|title=Post-Viral ME/CFS: Diagnosing & treating ME/CFS in the time of COVID|last=MEAction|date=August 2020|website=MEAction.net}}</ref> and one for laypersons.<ref>{{Cite web|url=https://www.meaction.net/longcovid/|title=Long COVID Seminar, 2020|last=MEAction|date=May 2020|website=meaction.net}}</ref> The former was adapted to a presentation at the Rochester School of Medicine and Dentistry and offered for credit as part of Grand Rounds.<ref name=":4" />

===== Mayo Clinic Proceedings CME =====
In 2023, #MEAction produced a [https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext Concise Clinical Review in ''Mayo Clinic Proceedings''] as part of a grant from the Society to Improve Diagnosis in Medicine. This project also funded the co-creation of a diagnostic and treatment algorithm and edits to Mayo's public-facing page on ME/CFS.

===== Teach ME, Treat ME Initiative =====
MEAction's #TeachMETreatME (Teach ME, Treat ME) campaign in 2024 was built around in-person and virtual medical education events at university hospitals, medical systems, and other healthcare institutions.<ref name=":2" />

==== Long COVID and the SARS-CoV-2 Pandemic ====

===== Community Outreach and Materials =====
* [https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020) #MEAction knew a wave of disinformation was about to hit during the pandemic. In April 2020, #MEAction created a guide to spotting and responding to healthcare-related disinformation.
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022) In response to the likely surge of infection-associated chronic illness, #MEAction created a guide to pacing for the newly-diagnosed in early 2020. Subsequently, #MEAction partnered with Long COVID Families to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Pediatric Pacing Guide], and with the Patient-Led Research Collaborative (PLRC) to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Clinician's Pacing Guide]
* The Hospitalization Kit (May 2020) #MEAction created two handouts for people with ME who face hospitalization due to COVID infection, including the [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] and the [https://www.meaction.net/resource/hospital-form/ Hospital Form].

===== Pandemic Press Outreach =====
In addition, MEAction staff, including Scientific Director [[Jaime Seltzer]], Advocacy Director [[Ben Hsuborger]], and Public Relations Manager [[Adriane Tillman]] communicated with multiple news outlets regarding ME/CFS and Long COVID, including ''TIME, Rolling Stone, Infection Control Today, The Washington Post, The Atlantic, NPR, the LA Times, Medscape, Stat News, Muck Rock, National Geographic,'' and many other publications.<ref>{{Cite web|url=https://www.meaction.net/2020/06/09/meaction-gets-me-in-the-spotlight/|title=#MEAction Puts ME Into The Spotlight|last=MEAction|date=June 9, 2020|website=MEAction}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/20/millionsmissing-press-hits-rolling-in/|title=#MillionsMissing Press Hits Are Rolling In!|last=Tillman|first=Adriane|authorlink=Adriane Tillman|date=September 20, 2022|website=MEAction.net}}</ref><ref>{{Cite web|url=https://www.meaction.net/2023/06/06/why-we-keep-telling-the-story-of-me-to-the-press/|title=Why We Keep Telling The Story Of ME To The Press|last=MEAction|date=June 6, 2023|website=MEAction.net}}</ref> Advocated at #MEAction UK and state and local groups at #MEAction gained many press hits as well.<ref>{{Cite web|url=https://www.meaction.net/2020/11/03/long-covid-patients-warned-of-damaging-exercise-programme/|title=Long COVID Patients Warned Of Damaging Exercise Programme|last=MEAction|date=November 3, 2020|website=MEAction.net}}</ref>

== Work on National and International Committees ==

* MEAction became a non-voting liaison representative to the [[Chronic Fatigue Syndrome Advisory Committee]] (CFSAC) for the term June 2017 to June 2019. CFSAC, an advisory committee to the US Office of the Assistant Secretary for Health, allots three seats to patient advocacy groups.
* MEAction representatives worked on a CDC committee to revamp their public-facing pages on ME/CFS in 2016; these changes were instituted in 2018
*

==Actions==

===PACE trial===

===US Congressional Outreach===

=== Centers for Disease Control and Prevention (CDC) ===
*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/#comment-56411 CDC Revises its Information on ME] MEAction report on the [[Centers for Disease Control and Prevention|CDC]] July 2017 and July 2018 website updates.<ref>[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref>[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref> Recommendations for the CDC's ME/CFS page have been created from patient feedback on the updates as well as asking for further patient input.

==Tools==

===Petitions===

===Medical & Scientific Fact Sheets===
*[http://www.meaction.net/wp-content/uploads/2018/10/Diagnosis-and-Management-of-Myalgic-Encephalomyelitis-MEAction.pdf #MEAction handout on the Diagnosis & Management of ME]
*[https://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf #MEAction Research Summary (2019)]

==Organization==

==Learn more==

==See also==
* [[MEAction Reddit]]

==Online presence==

*[http://www.meaction.net/ Website]
*[http://twitter.com/MEActNet Twitter]
*[http://fb.com/meactnet Facebook]

== References ==
{{Reflist}}

[[Category:Patient groups]]
[[Category:American patient groups]]
[[Category:International patient groups]]
[[Category:Blogs]]

The MEAction Network

2024-04-22T23:24:44Z

JaimeS:More info and rearranging the order to be more-or-less chronological, re: projects

[[File:Meaction logo red.png|thumb]][http://www.meaction.net/ #MEAction] (The Myalgic Encephalomyelitis Action Network) is a worldwide [[ME/CFS]] patient advocacy group co-founded May 12, 2015 by [[Jennifer Brea]] and [[Beth Mazur]].

Its focus is on empowering patients to take action to improve the status of research and clinical care through nationally organized efforts with the support of local affiliate groups in countries around the world. #MEAction also runs special interest groups focused on science and research, public education and press relations.

==History==
<nowiki>#</nowiki>MEAction began in 2015 with co-founders [[Beth Mazur]] and [[Jennifer Brea|Jen Brea]]. In 2016, [[Ben Hsuborger]] was hired as Advocacy Director, [[Jaime Seltzer]] was hired as Managing Editor, and [[Adriane Tillman]]. Seltzer worked at the Stanford Genome Technology Center under Dr. Ron Davis before returning in 2018 in the role of Director of Scientific and Medical Outreach, later Scientific Director. [[Laurie Jones]] was brought on as Executive Director, [[Holly Lanham]] as Social Media Coordinator, [[Erin Roediger]] as Programs and Campaigns Director, [[Steven Moloney]] as Video and Communications Manager, and [[Marynka Marquez]] as Development Coordinator.

<nowiki>#</nowiki>MEAction began as a grassroots movement with the goal of making advocacy more accessible by leveraging technology that was not yet standard at the time, like videoconferencing software and Slack. In 2016, #MEAction formed the first #MillionsMissing protests. A 'test run' of #MillionsMissing ran in twelve cities worldwide in 2016; later in the same year, the protests expanded to include over a hundred events, local and virtual, to fight for better government research funding, accessible clinical care, and broader recognition of ME.<ref name=":1">{{Cite web|url=https://www.marieclaire.co.uk/reports/millionsmissing-campaign-me-595261|title=The important reason why people are leaving shoes around cities|last=Banach|first=Je|date=May 2018|website=Marie Claire}}</ref> MillionsMissing events continue today, with the 2024 efforts focused around medical education: the Teach ME, Treat ME initiative.<ref name=":2">{{Cite web|url=https://millionsmissing.meaction.net/mm24/|title=Teach ME, Treat ME|last=MEAction|date=January 2024|website=Millions Missing}}</ref>

==Notable projects==

==== PACE Trial Petition ====
MEAction's first major action as an organization was the PACE petition signed by 12,000 individuals,<ref name=":1" /> protesting the [[PACE trial]] and requesting retraction of the paper on grounds of unethical conduct. MEAction worked with [[David Tuller]] to obtain three dozen signatures from clinicians and researchers for an open letter asking the Lancet for an independent review of the PACE trial;

MEAction UK has demanded "an immediate end to the use of [[Graded exercise therapy|GET]] and [[Cognitive behavioral therapy|CBT]]."<ref name=":0">{{Cite news | url=https://www.meaction.net/2018/07/01/what-next-for-the-nice-guidelines/ | title = Parliament Plays NICE - #MEAction | last =#MEAction | first= | date = 2018-07-01|work=|access-date=2018-11-14|archive-url=|archive-date=|url-status=|language=en-US}}</ref> The [[United Kingdom|UK]] treatment guidelines for ME/CFS, known as the NICE guidelines are currently under review, but MEAction has demanded an interim change to the existing guidelines to stop the use of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) before the new guidelines are published.<ref name=":0" />
==== MillionsMissing ====
The [[Millions Missing protests]] were created by MEAction. Millions Missing (or #MillionsMissing) is an annual event or series of events that began at #MEAction as the idea of one advocate that grew into a concept adopted by ME organizations worldwide.

In discussions, ME advocates kept returning to the idea that [[post-exertional malaise]] (PEM) made it challenging if not impossible to protest in person. "Millions Missing" was a way to represent those who were too ill to protest, and those who had died due to complications of the disease.

==== MEpedia ====
[[MEpedia]] is a project founded by [[The MEAction Network]], powered by the patient community, and built by volunteers including patients, students, and researchers. It is a crowd-sourced knowledge base on the history, science and medicine of [[Myalgic encephalomyelitis|ME]], [[Chronic fatigue syndrome|CFS]], and [[related diseases]].

Currently, MEpedia has over 3,000 articles which have been viewed over 40 million times.

==== Medical Education ====
In 2018, Jen Brea's documentary about ME from Shella Films, ''[[Unrest]]'', debuted. MEAction then worked with [[Lucinda Bateman|Dr. Lucinda Bateman]] and [[David Kaufman|Dr. David Kaufman]] to produce a short accompanying film about diagnosis and treatment for continuing education (CE, or CME) credits.<ref>{{Cite web|url=https://www.unrest.film/cme|title=Watch Unrest and Receive Continuing Medical Education (CME / CE) Credit|date=April 22, 2024|website=Unrest Continuing Medical Education}}</ref> These are credits required for medical providers to maintain their licenses in the United States. Then, MEAction launched the ''Postcards to Doctors'' campaign, in which members of the community sent hand-written postcards urging clinicians to take the CME and share it with others. The initiative ran in 2019 and 2020 and, as a result, over 700 medical providers took the ''Unrest'' CME.<ref name=":3">{{Cite web|url=https://www.meaction.net/2020/01/28/postcards-returns-2/|title=Celebrating Postcards To Doctors: Final Report|last=Seltzer|first=Jaime|authorlink=Jaime Seltzer|date=January 28, 2020|website=MEAction.net}}</ref> The rate of uptake for the Postcards initiative alone rivaled that of in-person offerings at conferences on ME/CFS,<ref name=":3" /> and the total number of providers who took the ''Unrest'' CME over its two-year run is many times the uptake for all-topic medical education.<ref>{{Cite web|url=n/a|title=Interview re: CME uptake|last=Shumaker|first=Theresa|last2=Interviewer: Seltzer|first2=Jaime|date=April 17, 2024|quote="The articles [in Mayo Clinic Proceedings] are available for 2 years. The number of learners is so varied- anywhere from 12-70 MDs per year, and also a varied number of other health professionals for each article ( Nurses, PA, others)."}}</ref>

In 2020, #MEAction held two seminars at the start of the pandemic, one for medical providers<ref name=":4">{{Cite web|url=https://www.meaction.net/seminar/|title=Post-Viral ME/CFS: Diagnosing & treating ME/CFS in the time of COVID|last=MEAction|date=August 2020|website=MEAction.net}}</ref> and one for laypersons.<ref>{{Cite web|url=https://www.meaction.net/longcovid/|title=Long COVID Seminar, 2020|last=MEAction|date=May 2020|website=meaction.net}}</ref> The former was adapted to a presentation at the Rochester School of Medicine and Dentistry and offered for credit as part of Grand Rounds.<ref name=":4" />

In 2023, #MEAction produced a [https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext Concise Clinical Review in ''Mayo Clinic Proceedings''] as part of an grant from the Society to Improve Diagnosis in Medicine. This project also funded the co-creation of a diagnostic and treatment algorithm and edits to Mayo's public-facing page on ME/CFS.

MEAction's #TeachMETreatME (Teach ME, Treat ME) campaign in 2024 was built around in-person and virtual medical education events at university hospitals, medical systems, and other healthcare institutions.<ref name=":2" />

==== Long COVID and the SARS-CoV-2 Pandemic ====
A number of pandemic-related projects and materials were created by #MEAction, including:

* [https://www.meaction.net/2020/05/09/meaction-disinformation-handbook-2/ The Disinformation Guide] (April 2020) #MEAction knew a wave of disinformation was about to hit during the pandemic. In April 2020, #MEAction created a guide to spotting and responding to healthcare-related disinformation.
* [https://www.meaction.net/resource/pacing-and-management-guide/ The Pacing Guides] (May 2020, 2021, 2022) In response to the likely surge of infection-associated chronic illness, #MEAction created a guide to pacing for the newly-diagnosed in early 2020. Subsequently, #MEAction partnered with Long COVID Families to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Pediatric Pacing Guide], and with the Patient-Led Research Collaborative (PLRC) to create the [https://www.meaction.net/resource/pacing-and-management-guide/ Clinician's Pacing Guide]
* The Hospitalization Kit (May 2020) #MEAction created two handouts for people with ME who face hospitalization due to COVID infection, including the [https://www.meaction.net/resource/hospital-checklist/ Hospitalization Checklist] and the [https://www.meaction.net/resource/hospital-form/ Hospital Form].
In addition, MEAction staff, including Scientific Director [[Jaime Seltzer]], Advocacy Director [[Ben Hsuborger]], and Public Relations Manager [[Adriane Tillman]] communicated with multiple news outlets regarding ME/CFS and Long COVID, including ''TIME, Rolling Stone, Infection Control Today, The Washington Post, The Atlantic, NPR, the LA Times, Medscape, Stat News, Muck Rock, National Geographic,'' and many other publications.<ref>{{Cite web|url=https://www.meaction.net/2020/06/09/meaction-gets-me-in-the-spotlight/|title=#MEAction Puts ME Into The Spotlight|last=MEAction|date=June 9, 2020|website=MEAction}}</ref><ref>{{Cite web|url=https://www.meaction.net/2022/09/20/millionsmissing-press-hits-rolling-in/|title=#MillionsMissing Press Hits Are Rolling In!|last=Tillman|first=Adriane|authorlink=Adriane Tillman|date=September 20, 2022|website=MEAction.net}}</ref><ref>{{Cite web|url=https://www.meaction.net/2023/06/06/why-we-keep-telling-the-story-of-me-to-the-press/|title=Why We Keep Telling The Story Of ME To The Press|last=MEAction|date=June 6, 2023|website=MEAction.net}}</ref> Advocated at #MEAction UK and state and local groups at #MEAction gained many press hits as well.<ref>{{Cite web|url=https://www.meaction.net/2020/11/03/long-covid-patients-warned-of-damaging-exercise-programme/|title=Long COVID Patients Warned Of Damaging Exercise Programme|last=MEAction|date=November 3, 2020|website=MEAction.net}}</ref>

== Work on National and International Committees ==

* MEAction became a non-voting liaison representative to the [[Chronic Fatigue Syndrome Advisory Committee]] (CFSAC) for the term June 2017 to June 2019. CFSAC, an advisory committee to the US Office of the Assistant Secretary for Health, allots three seats to patient advocacy groups.
* MEAction representatives worked on a CDC committee to revamp their public-facing pages on ME/CFS in 2016; these changes were instituted in 2018
*

==Actions==

===PACE trial===

===US Congressional Outreach===

=== Centers for Disease Control and Prevention (CDC) ===
*Jul 29, 2018, [https://www.meaction.net/2018/07/29/cdc-revises-its-information-on-me/#comment-56411 CDC Revises its Information on ME] MEAction report on the [[Centers for Disease Control and Prevention|CDC]] July 2017 and July 2018 website updates.<ref>[http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/ Trial By Error: The CDC Drops CBT/GET - Virology Blog]</ref><ref>[https://www.cdc.gov/me-cfs/index.html Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov]</ref> Recommendations for the CDC's ME/CFS page have been created from patient feedback on the updates as well as asking for further patient input.

==Tools==

===Petitions===

===Medical & Scientific Fact Sheets===
*[http://www.meaction.net/wp-content/uploads/2018/10/Diagnosis-and-Management-of-Myalgic-Encephalomyelitis-MEAction.pdf #MEAction handout on the Diagnosis & Management of ME]
*[https://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf #MEAction Research Summary (2019)]

==Organization==

==Learn more==

==See also==
* [[MEAction Reddit]]

==Online presence==

*[http://www.meaction.net/ Website]
*[http://twitter.com/MEActNet Twitter]
*[http://fb.com/meactnet Facebook]

== References ==
{{Reflist}}

[[Category:Patient groups]]
[[Category:American patient groups]]
[[Category:International patient groups]]
[[Category:Blogs]]