NEWS

This year has been hard- we know because we have been on the ground fighting for ME and Long COVID every single day. In 2025, #MEAction has accomplished a lot. Just take a look below.1. Advocating for funding for the ME/CFS Research Roadmap: Secured a meeting with the NIH Director, and got the roadmap included in Congress’ draft appropriations language.2. Helping Minnesotans with ME/CFS and Long COVID apply for home care support by launching the Minnesota Home Help Navigation

Summary review of the recent RECOVER TLC Workshop

#MEAction and the Mayo Clinic have been awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant awarded by STTI.

We tallied up some numbers from our #TeachME, TreatME campaign to educate clinicians and medical students about ME, and the results are fantastic!

We encourage you to share the Mayo Clinic Proceedings CME course on ME/CFS with your doctor!

We are THRILLED to share the successes of our #TeachMETreatME campaign as we report back on the medical education events that have taken place so far.

#MEAction’s Jaime Seltzer has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year!

NIH’s recent paper on ME/CFS elicited strong reactions from the community.  While we recognize the incredible sacrifice of the patient community who gave their health and time to make this study possible, ultimately, we caution against drawing any sweeping conclusions from this study. The paper draws conclusions based on an atypical cohort that may not be representative of the ME/CFS community, and from a very small sample size, and there are also conclusions drawn in regards

The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th. #MEAction is a member of the ME/CFS Research Roadmap Working Group and for the past several months we have been advocating on behalf of this community within this group. Our Executive Director, Laurie Jones, served on the nervous system committee group prior to going out on maternity leave. She helped plan the first webinar and wrote drafts of research objectives with other committ

Two years ago, #MEAction embarked on an ambitious project, the Chronic Illness Survey Adventure! The Adventure is a survey to deeply examine the symptoms experienced by people with diseases that are triggered or unmasked by infection, including ME, POTS, hEDS, MCAS, and Long COVID.  At the end of this year, we will close the Adventure with over 1.5 million data points illustrating the connections between these diseases’ symptom presentation, and what makes each disease– and e

A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators. Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model has so far produced: • Updates to the Mayo Clinic public-facing page on ME/CFS • A new diagnostic

Great news! About six months ago, we began a project to update, expand, and revamp MEpedia. Due to a generous grant, we were able to create a project scope, hire respected experts in accessibility and MediaWiki development, and make several important changes to MEpedia!MEpedia is a Vital ResourceMEpedia is one of the most utilized resources for researchers, clinicians, and people living with ME/CFS, with over 36 million page views.  However, the software running MEpedia, Medi

#MEAction is thrilled to announce a new travel scholarship for providers and medical students to the National Institutes of Health’s (NIH) Conference, Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID, this coming December 12- 13, 2023 in Bethesda, MD.  #MEAction is providing this opportunity for one to two promising medical students (MD, DO, NP,  or PA)  and one to two practicing medical providers (MD, DO, NP, or PA). All scholarshi

WHO: Dr. Benjamin Natelson at the Mount Sinai Hospital (New York)WHAT: The Pain and Fatigue Study Center at Mount Sinai is looking to examine why post activity fatigue (Post-exertional malaise) occurs in patients with ME/CFS and at what level. We are looking for patients that are between the ages of 25-60 and BMI of 30 and below.In order to confirm your eligibility, we will complete a brief phone intake.WHEN: The study will run for two years or until we reach our target numbe

#MEAction and Mayo Clinic win SIDM for diagnostic and treatment improvement at Mayo Clinic Rochester for people with ME/CFS!

We're thrilled to welcome Jaime Seltzer as our Director of Scientific and Medical Outreach.