Covid-19 Resources for People with ME

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Category Archives: Patients

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 ...

Citizen science highlights non-recovery in COVID-19 patients

Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team. The Body Politic COVID-19 Support Group surveyed over 600 participants who had experienced/were experiencing COVID-19 symptoms for at ...

Enrolling studies: Internet-Based Participation

What: Researchers at Southern Connecticut State University are currently enrolling individuals in a study that will examine an intervention app for people living with ME/CFS. This app monitors daily perceived and expended energy and fatigue levels. Participants will be asked to complete an online survey about their health history, ME/CFS ...

Charging Your Batteries

Ingebjørg Midsem Dahl has severe ME, and has written a book about pacing called, "Classic Pacing for a Better Life with ME." She attributes her slow but steady improvement from being severe to now only housebound to following her own advice on pacing, and from various medical treatments, such as ...

Postcards to Doctors Featured Artist: Lia Pas

#MEAction’s Postcards to Doctors initiative has continued to be an incredible success! Thanks to the hard work of the #MEAction community we have sent postcards to nearly 6,000 clinicians across the United States. We could not have done this without the invaluable contributions from the artists who designed our postcards ...

ME Services in the UK Not Fit for Purpose

A recent survey conducted by #MEAction UK found that UK specialist myalgic encephalomyelitis (ME) services are not fit for purpose. Areas investigated included: Management strategies Experience attending a clinic Cognitive behavioural therapy (CBT) Activity management The survey was conducted to provide evidence to the National Institute for Health and Care ...
Background of papers with graphs and charts, overlayed by text reading "Take the ME call for evidence survey"

Your experience of ME/CFS services – Take the survey by #MEAction UK

The National Institute for Health and Care Excellence (NICE) are updating their guidelines on ME. As part of this they have published a call for evidence about 3 topics. #MEAction UK has put together the following survey to provide further evidence for the committee. The survey asks about advice given ...

The Unique Challenge of Aging with M.E.

Aging can be a challenging time for anyone but people with the debilitating, chronic disease of myalgic encephalomyelitis (ME) often find that their symptoms are dismissed as a "normal" part of aging, and so are left without the diagnosis, care and support that they need from their medical providers and community ...

Proud Accessible Activism: The ME Debate Virtual Demonstration

Throughout history, activism and campaigning have been a driving force for positive change across the world. From civil rights to LGBTQ rights and more. However much of this has been inaccessible to large swathes of the disability community. For the ME community - the #MillionsMissing -  the nature of this ...

Stuart Murdoch’s open letter ahead of the ME Debate

Stuart Murdoch is the lead singer of Belle and Sebastian. He has had ME for 28 years and he has kindly shared with us this open letter to the UK government ahead of the ME debate on Thursday, 24th January. Dear UK Government, I am one of the 250, 000 ...