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==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=1544β1551|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> 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>
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