Advocacy Archives

OPEN LETTER DEMANDS ACTION TO SAFEGUARD PEOPLE WITH ME, NOT JUST POST-COVID PATIENTS

August 6, 2020 No Comments

#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. Development and publication of the new ME/CFS

REPORT PART 1: NIH IS NOT ADVANCING ME/CFS RESEARCH

July 29, 2020 No Comments

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

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

July 29, 2020 No Comments

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

Join #MEAction in Celebrating the Activism that made the ADA a reality!

#MEACTION CELEBRATES THE ACTIVISM THAT MADE THE AMERICANS WITH DISABILITY ACT A REALITY

July 23, 2020 No Comments

30TH ANNIVERSARY OF THE ADA The celebration of the 30th Anniversary of the Americans with Disability Act (ADA*) is more than a celebration of the day when pen was put to paper in order to sign a bill into law, it is the celebration of the amazing, heroic efforts disability activists took in order to

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

July 15, 2020 1 Comment

#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.

National Disability Voter Registration Week

July 13, 2020 No Comments

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

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

July 11, 2020 3 Comments

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.

Dr. Anthony Fauci says that post-covid syndrome “is highly suggestive of” myalgic encephalomyelitis

July 10, 2020 7 Comments

During an International AIDS Society Covid-19 press conference held July 9th, Dr. Anthony Fauci (Director of the National Institute of Allergy and Infectious Diseases and member of the White House Coronavirus Task Force) answered a question posed by Terri L. Wilder, who is the #MEAction New York leader, journalist for TheBodyPro website, and long-time ME

ADA 30th Anniversary–Stories Wanted

July 9, 2020 No Comments

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

Post-COVID research & clinical care must include ME/CFS

June 26, 2020 2 Comments

People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been concerned since the start of the coronavirus pandemic that a subset of COVID-19 patients will go on to develop ME/CFS. Unfortunately, we are already hearing from many COVID-19 survivors around the world that they are continuing to experience debilitating symptoms for many months, even after “mild”

Category: Advocacy