Author: #MEAction

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 see here. For Report Part 2: NIH

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Read our Report on NIH

REPORT SUMMARY: WHAT NIH IS (AND ISN’T) DOING FOR ME/CFS & LONG COVID RESEARCH

As more and more COVID-19 survivors report disabling, multi-system symptoms lasting months on end, the National Institutes of Health (NIH) is finally beginning to openly acknowledge the serious health risks ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) poses to the public. In the past couple of weeks, Dr. Anthony Fauci, Director of the National Institute of Allergy and

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Take action: graded exercise harming people with ME and COVID long haulers

#MEAction UK has sent an open letter to Matt Hancock asking him to recognise the harm caused by graded exercise therapy. We are calling on him to ensure all advice for people with ME, and those at risk of developing ME post-COVID, warns of the harm from graded exercise therapy. Join us by asking your MP to write to Matt Hancock too and telling them about your experience of ME.

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National Disability Voter Registration Week

National Disability Voter Registration WeekJuly 13-17, 2020 #MEAction is excited to participate in National Disability Voter Registration Week!  Let’s get people with ME and all people with disabilities registered to vote, educated about this year’s election, and prepared to cast our ballots! We have gathered resources to help make it as simple as possible as

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Graded exercise therapy not recommended for post-COVID fatigue, say NICE

The National Institute for Health and Care Excellence (NICE) have released a document entitled “interim findings”, stating that the recommendation of graded exercise therapy for mild and moderate ME/CFS should not apply to people with fatigue following COVID-19. They note that the existing guideline was published in 2007, many years before the pandemic, and that they are aware of concerns around graded exercise therapy.

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ADA 30th Anniversary–Stories Wanted

The 30th of the anniversary of the American Disability Act (ADA) is fast approaching–July 26th. As a way to celebrate this momentous occasion, we are looking to share stories of how the ADA has positively impacted the lives of people with ME.We want to honor those who fought hard to make sure we have the

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