All News Archives

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

September 23, 2019 No Comments

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. [maxbutton id=”22″ url=”https://forms.gle/ZXEdp7W5nW4KBBcu8″ text=”Take the survey” ] The survey asks

#MEAction Advocates will Speak at Stanford MEDx Conference this Weekend

September 21, 2019 1 Comment

#MEAction advocate, Terri Wilder, and #MEAction board member, Ryan Prior, are co-presenting at the Stanford MEDx conference this weekend about how #MEAction empowers the myalgic encephalomyelitis (ME) community through technology. Terri and Ryan will discuss the history of #MEAction, its founders, its reason for being, its social justice philosophy, its policy goals, the PACE trial,

Brussels will Discuss EU Petition to Fund Biomedical Research for ME

September 18, 2019 4 Comments

Great news! Remember the petition that asks the EU to fund biomedical research on ME? It will be discussed at the meeting of the Committee on Petitions on October 3rd 2019 in Brussels! It is scheduled for discussion at around 11:05 CEST. Francis and Evelien have been working on this project for over a year

#MEAction Volunteer-of-the-Month: She’s been Fighting for Change for Four Decades

September 6, 2019 No Comments

This month, #MEAction is honored to nominate Wilhelmina Jenkins as our Volunteer-of-the-Month. Wilhelmina has been fighting for recognition and progress for myalgic encephalomyelitis (ME) for nearly four decades since she suddenly became ill in 1983. She brings a wealth of knowledge, wisdom and fortitude to our community, and we are incredibly grateful for her perseverance

Patient Registry is the Key to Achieving Big Data for M.E.

September 5, 2019 No Comments

We were excited to see #MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, give a talk about “Big Data and myalgic encephalomyelitis (ME)” yesterday at Stanford University. Researchers and clinicians have gathered at Stanford to discuss the latest and ongoing research into ME for the Third Annual Working Group Meeting on the Molecular Basis

NIH Working Group Releases Report on ME

September 4, 2019 1 Comment

Yesterday, the U.S. National Institutes of Health (NIH) published a report of the NANDS Council Working Group for ME/CFS research. #MEAction’s NIH Committee (comprised of staff and volunteers) will take time to thoroughly review this report’s recommendations and issue a full response to the NIH. Read the NANDS report. In the meantime, we want to share a

NICE Call for Evidence on ME guidelines

September 3, 2019 No Comments

The National Institute for Health and Care Excellence (NICE) have put out a call for evidence in relation to the ongoing update of their ME/CFS guidelines, due to be published in October 2020. This is an opportunity to ensure that all relevant information is held by the guideline development committee as they work to assess

#MEAction’s Postcards to Doctors is an Unprecedented Success!

August 30, 2019 No Comments

#MEAction’s Postcards to Doctors initiative has been successful beyond our wildest hopes! Since August 1, we’ve received requests for more than 3,500 postcards from hundreds of individuals and groups. People from all over the United States have signed up to write to their clinicians asking them to take #MEAction’s CME program – we’ve sent out

NICE drag their feet on stopping the harm caused by GET and CBT

August 27, 2019 No Comments

As part of our ongoing advocacy work, #MEAction UK has been campaigning for the National Institute for Clinical Excellence (NICE) to update the current ME guidelines. Updated ME/CFS guidelines are due to be published in October 2020. However in the meantime, the existing guidelines published in August 2007 that recommend Cognitive Behavioral Therapy (CBT) and

UK fundraiser seeking your ME stories

August 27, 2019 No Comments

Ellie Rushton, Birmingham UK, is setting out on a rather unique fundraising adventure. For the next six months (September to February) she will be attempting to do 1000 reps of bodyweight exercises every, single, day. Ambitious indeed! But what does it have to do with ME? “I had never heard of ME until I met

Category: All News