ACTION ALERT: Tell the NIH to accelerate research for ME. Sign the petition!


Category Archives: Topics

We Remember and Honor the Life of Heather Colman-McGill 

/ by / 2 Comments
Our dear community, Let us take a moment to gather together and comfort one another. We are saddened to bring you news of a death in the community. Heather Colman-McGill has passed away. We send our heartfelt condolences to all of Heather’s loved ones. We know that many in our community had reached ...

Meet the Scientist: Dr. Dane Cook

/ by / 0 Comment
Dane Cook is Professor of Kinesiology at the University of Wisconsin and Director of the March Center for Research in Exercise and Movement. He is also a member of the US. National Institute of Neurological Disorders and Stroke Council Working Group for ME/CFS Research Roster. How did you get involved with the area of ...

Evelien’s Journey to Meet the EU Parliament

/ by / 0 Comment
Hi everyone! First of all I would like to express my heartfelt thanks to all who contributed to the success of the petition that asks for the EU to fund biomedical research on ME. So many people helped out by writing to their MEPs, translating documents, making phone calls, sharing the ...

ME Services in the UK Not Fit for Purpose

/ by / 3 Comments
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 Excellence ...
NICE Call for Evidence response #MEAction UK

NICE Called for Evidence: Read #MEAction UK’s Response

/ by / 1 Comment
The National Institute for Health and Care Excellence (NICE) are re-writing their guidelines on ME. As part of this they issued a call for evidence relating to three topics. #MEAction UK has now submitted our full response, collecting studies, surveys and data from multiple sources.   #MEAction UK also wrote, circulated and ...

Degrees of Distance

/ by / 1 Comment
Many of us (housebound/bedbound) worry about dear ones who are sick, infirm, or struggling, esp. if we live afar. We feel not being there when we need to be, want to be, no matter what the circumstances, as failed fidelity, incurring a debt of love ...

Status Update On #MEAction’s Congressional Work

/ by / 0 Comment
#MEAction’s Congressional Committee team has been very busy this year. We want to give you a status update and alert you to an ongoing action you can pursue. Appropriations Since March of this year, #MEAction, in partnership with the Solve ME/CFS Initiative and MassME/CFS & FM Association, has been working to increase ...

Cochrane Analysis: What’s Here, What’s missing, Conclusions

/ by / 1 Comment
Exercise therapy for chronic fatigue syndrome Lillebeth Larun, Kjetil G Brurberg, Jan Odgaard-Jensen, and Jonathan R Price Editorial group: Cochrane Common Mental Disorders Group As of October 2, 2019, the Cochrane review of GET in ME has been re-issued after the evidence was reassessed. You can read the whole review and a quick ...

Join #MEAction’s Board of Directors

/ by / 0 Comment
#MEAction is building a global movement to fight for recognition, education and research so that one day, all people with ME will have access to compassionate, effective care. We are currently seeking patients, caregivers, and allies with one or more of the following experiences to join our Board of Directors: Have ...

Are you Disabled? How does ME fit into the Disabled People’s Movement?

/ by / 15 Comments
Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in our work as a large, diverse community. This process will culminate in a statement of ...