COVID-19 and Long haul COVID Resources

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Category Archives: United States

Photo of US ME/CFS Clinician website. Blue Banner with title at top and a question that reads What is ME/CFS?

All Doctors Should Go To This Website For ME Information!

We are thrilled to share that The US ME/CFS Clinician Coalition has launched a beautiful website to provide clinicians with expert information on the diagnosis and management of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). The website includes the basics of clinical management, diagnosis and management, comorbid conditions, and resources on ...

#MEAction New York Co-Hosts Free Webinar for Clinicians on September 30th!

#MEAction NY is co-sponsoring a free CME webinar Wednesday, September 30th, 2020 and we need to share widely so clinicians can know to register! DATE: Wednesday, September 30, 2020 12:00-1:00 EST Topic: Post-Viral Syndrome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): What Every Clinician Needs to Know Speaker: David Kaufman, MD, ...
mayo clinic building

Mayo Clinic Removes GET and CBT from CFS Webpage

The Mayo Clinic recently removed harmful recommendations of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) for myalgic encephalomyelitis (ME) from their website, a win for people with ME and their families. The site still contains problematic language and misleading information, but this recent change could help many individuals ...

What’s happening for ME in Congress: H.R. 7057

We are so proud and grateful for the work of Solve M.E., #MEAction’s activists, state groups, volunteers and supporters who have rallied behind H.R. 7057. Over the past few months, #MEAction has met with Solve M.E. to discuss our respective efforts and how we can best coordinate and support each ...

NIH Director: long haulers “decided to take matters into their own hands”

NIH Director Francis Collins just published a blog post highlighting the plight of COVID-19 “long haulers” and the role of citizen-science efforts at the Body Politic COVID-19 Support Group in compiling the first detailed patient survey of long COVID and analyzing the results. #MEAction reported on the survey results in ...
Summer Update

Our Summer in Review: Advocacy and Education

What a Summer for Advocacy and Education! We know the summer isn’t over yet, but A LOT has been happening with ME advocacy and education in the United States and the United Kingdom, and we want to make sure you are up to date, in the loop, and ready for ...
2020 Congressional Work

2020 Congressional Work

A number of our US supporters have reached out to ask for clarity about #MEAction’s work 2020 congressional advocacy. We realize this is an area where we should and can communicate better. We wrote this statement in the hopes of helping the community to better understand our thinking and strategy ...
Graphic showing a thumbs-up and a thumbs-down

Join Our Community Debrief Meeting about the NIH this Wed.

Join us this Wednesday for a community meeting to debrief about last week's NIH Interagency ME/CFS Working Group meeting, and to discuss where we go from here. Join the call this Wednesday, Aug. 19th at 3pm ET / 12pm PT. The meeting was quite something. At the last minute, Jaime ...
researcher in lab examines chemical compounds

Report Part 2: NIH lacks coordinated response for long COVID research

The NIH is shaping research initiatives to study the long-term consequences of COVID-19 (long COVID), but it lacks the coordinated, outcomes-focused strategy necessary to deliver biomarkers and treatments to the people who need them. Editor’s note: This is part of a series on what the NIH is (and isn’t) doing ...
health technician with blood tubes in the clinical lab

Report Part 1: NIH is not advancing ME/CFS research

The NIH is doing little to expedite a coordinated, outcomes-focused plan for ME/CFS research, an enormous missed opportunity in the era of COVID-19. Editor’s note: This is part of a report series on what the NIH is (and isn’t) doing for ME/CFS and long COVID research. For our Report Summary ...