COVID-19 and Long haul COVID Resources

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Category Archives: Advocacy

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 ...

Training opportunity to join our UK and Scotland social media teams

We have 6 places available on a digital marketing training course. Being able to communicate information effectively and efficiently is key to much of the work #MEAction does. We are looking for new volunteers to join us. If you’d like to help us reach and engage our target audiences, we’d ...
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 ...

Good Morning Britain gets it wrong on post-COVID treatment and ME

#MEAction UK has written a letter of complaint to Good Morning Britain in response to recent statements from Dr Hilary Jones on the programme, regarding the rehabilitation of long COVID patients. In his interview with Kate Garraway yesterday, Dr Jones recommended graded exercise as a strategy for those recovering from ...

Last week in review: CNN, Long-Covid Seminar, Severe ME Day & more!

Last week was inspiring and eventful! We had a huge turn-out for our US Advocacy Meeting about the National Institutes of Health’s (NIH) response to long Covid and ME, we co-hosted and organized a seminar for those with long Covid with amazing organizations and activists, #MEAction UK wrote an open ...

Open letter demands action to safeguard people with ME, not just post-COVID patients

#MEAction UK have once again written to the National Institute for Health and Care Excellence (NICE) imploring them to act to safeguard people with ME from harm, after their recent statement cautioning that the recommendation of graded exercise therapy should not be assumed to apply to patients with post-COVID symptoms ...
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 ...