SCIENTIFIC & MEDICAL ADVOCACY

#MEAction is actively generating scientific data, organizing medical education campaigns, collaborating with medical groups and producing medical education tools to advance our knowledge and expertise for ME/CFS, Long COVID and other infection-associated chronic diseases.

We have led research projects using patient-centered data, created medical education tools and campaigns, and launched MEpedia, a wiki for information around ME and other infection-associated chronic conditions.

Scroll down to view highlighted projects.

MAYO CLINIC PROCEEDINGS PAPER & CME

#MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, co-authored a paper in Mayo Clinic Proceedings on how to diagnose and manage ME/CFS. The paper suggests specific tests to run to identify abnormalities, and offers gold standard recommendations for treating common symptoms, with a special note about how to recognize and manage severe ME. The work was funded through a grant from the Society to Improve Diagnosis in Medicine (SIDM), which also supported the creation of a diagnostic and treatment algorithm within AskMayoExpert, and a revamp of the ME/CFS page on Mayo’s website.

The paper rated in the top 0.2% most shared research products of all time.

PACING NARRATIVE SURVEY

We partnered with Mayo Clinic to co-author a Pacing Narrative Study. We crowdsourced valuable experience from the community in order to develop a comprehensive survey about the pacing needs of our community. Over 700 participants filled out the survey, and the data is being used to produce patient education materials in collaboration with Mayo Clinic and the University of Houston ClearLake researchers after earning a grant from Sigma/ANCC to support the work.

ANKI FLASHCARDS

#MEAction produced Anki study flashcards (reviewed by medical providers) for medical students to use as study aids, with study questions about infectious-associated diseases, including ME/CFS, Long COVID, POTS, MCAS, EDS, SFN, SIBO and more. Our flashcards have been recommended by CDC on its new ME/CFS page for medical students!

SYMPTOM CLUSTER CHARACTERIZATION PROJECT

In 2021, #MEAction launched a massive Chronic Illness Survey (Symptom Cluster Characterization in Complex Chronic Disease) where we surveyed 6k+ people living with ME/CFS, Long COVID, POTS, hEDS, and MCAS to generate data about symptoms.

Our survey examined symptoms listed in sets of diagnostic criteria for each illness, as well as incorporated validated surveys for complex symptoms. We also recruited clinical partners to validate their own patients’ diagnoses.

Our survey has generated patient-reported symptoms not present in any set of criteria. We are currently analyzing this data.

MEPEDIA

#MEAction created and maintains MEpedia, a crowd-sourcing knowledge base on the history, science and medicine of ME, CFS, and related diseases.

MEpedia's 3,419 articles have been viewed over 62 million times!

TEACH M.E., TREAT M.E. CAMPAIGN

In spring of 2024, #MEAction launched our “Teach ME, Treat ME” campaign where we worked with community advocates to organize 20 medical education events to encourage medical providers to take the Mayo Clinic Proceedings Continuing Medical Education (CME) course on ME/CFS. We also presented medical education flashcards on ME/CFS and Long COVID to medical schools.

STOP REST PACE CAMPAIGN

At the beginning of the COVID-19 pandemic, #MEAction launched a campaign to warn people experiencing Long COVID symptoms to pace their activity, and not force themselves to exercise or return immediately to pre-illness activities. Our campaign aimed to educate the newly forming Long COVID community and medical providers treating them about post-exertional malaise, and the danger of graded exercise therapy as a treatment. #MEAction developed pacing guides for adults, pediatrics and clinicians as part of the campaign.

EDUCATING CLINICIANS ABOUT CONNECTION BETWEEN LONG COVID & ME/CFS

In 2021, #MEAction and the University of Rochester presented a Grand Rounds seminar on how to diagnose and manage ME/CFS titled: “Post-viral ME/CFS: Diagnosing and Treating ME/CFS in the Time of COVID.” The course also provided an accompanying Continuing Medical Education credit, and a sister seminar for patients on how to manage Long COVID and ME/CFS symptoms.

In 2019, we published our Research Summary, reviewing the most current and important research into ME over the past 10 years. The summary serves as an invaluable resource for clinicians, health officials, government leaders, journalists and the ME community.

CONTINUING MEDICAL EDUCATION COURSES

Over the years, #MEAction has created and supported various Continuing Medical Education courses, including: Unrest CME.

#MEAction launched its US Unrest Continuing Medical Education (CME) course last October to educate doctors, nurses and social workers about ME. Nearly four hundred clinicians have signed up for the Unrest CME thus far, including many who told us that your postcards reached them!

Since Unrest debuted, you have organized hundreds of screenings worldwide. The work continues. This year, you organized 34 screenings in 32 cities! 125 medical students learned about ME at an Unrest screening in Belfast organized by Hope 4 Me & Fibro Northern Ireland, and Italy held its first Unrest screening in Turin.

Created a continuing medical education course for ME based on Unrest, in collaboration with Dr. David Kaufman, the American Medical Women’s Association, and Indiana University School of Medicine. Three hundred clinicians have signed up for the CME thus far.

POSTCARDS TO DOCTORS

In 2019, #MEAction launched a medical education campaign called Postcards to Doctors. Hundreds of volunteers sent over 6,000 beautifully-designed, handwritten postcards to doctors throughout the US, encouraging them to take the Unrest Continuing Medical Education course. The campaign helped spur over 700 providers to take the Unrest CME.

EXPERT CONSULTANT

#MEAction’s Scientific Director, Jaime Seltzer, is continuously asked to engage as an expert on ME/CFS, including on advisory boards, on panels and at conferences, including:

(2025-26) ME/CFS Research Network Data Management and Coordinating Center, National Institute of Neurological Disorders and Stroke (NINDS), Centers for Disease Control and Prevention (CDC) — Post-exertional Malaise CDE Working Group
(2025) CMSS and CDC Long COVID Education, Engagement, and Care Management Expert Panel — PEM Working Group
(2025) American Academy of Infection-Associated Chronic Conditions (AAIACC) — Advisory Board
(2024) National Institutes of Health (NIH), RECOVER TLC — panelist
(2024) National Institutes of Health (NIH), Research Roadmap ME/CFS — reviewer
(2022-23) Patient Led Research Collaborative (PLRC), Patient-Led Research Fund — peer reviewer
(2021-22) Council of Medical Specialty Societies (CMSS) & Patient-Led Research Collaborative (PLRC) on PCORI-funded project, “Promise of Patient-Led Research Integration into Clinical Registries and Research.”
(2022) PLoS One, grant review
(2022) Project ECHO, Long COVID Fatiguing Illness Recovery Program, CDC-funded — panelist & presenter
(2022-23) CURE Long COVID Working Group — shaped recommendations for trials for drugs for Long COVID
(2019-24) Cochrane Review, Independent Advisory Committee re: Exercise and ME/CFS Review
(2018-22) NIH-funded Collaborative Research Centers' Community Advisory Committee, Columbia University Center for Infection & Immunity — chair of Study Feasibility Committee, Research Priorities Committee
(2019-24) Canadian Institute for Healthcare Research (CIHR) — grant review
(2016-22) Annual Centers for Disease Control (CDC) Roundtable Meetings — suggested updates to CDC website and provide yearly community feedback
(2021) World Health Organization (WHO) "Expanding our understanding of Post COVID-19 condition" — panelist, committee member
(2019, 2020, 2022) Work — peer review for the journal's special edition on ME/CFS
(2019-20) Global Health Protection Environmental Health Coordination Section, Department of Health (GHPEHC), DSCATT (post-Lyme) Clinical Pathway Project — Community advisory council
(2018-19) Accelerating Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome conference, National Institutes of Health (NIH) — planning committee

JEN BREA'S TEDTALK

In 2016, #MEAction’s co-founder, Jen Brea, gave a TedTalk titled “What happens when you have a disease doctors can't diagnose.” The TedTalk has been viewed over 2.5 million times, and continues to be an important advocacy tool for ME/CFS, Long COVID and other infectious-associated chronic diseases.