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 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
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
California advocates for myalgic encephalomyelitis (ME) are fighting for the state to institute a statewide Centers of Excellence program that would train ME specialists, provide state-of-the-art treatment for people with ME, and undertake advanced research. Activists across the state have already met with 24 state legislators to discuss this initiative. Activist and parent of a
#MEAction UK has written a letter with regards to a survey that states it is to protect specialist CFS/ME services in the UK. We do not recommend people fill in this survey. It is written in such a way that it could be misused to support the existing treatment paradigm that harms people with ME.
Listen to the article: Part 1: Part 2: In the past two weeks, The Guardian/The Observer and Psychology Today US have published articles portraying the myalgic encephalomyelitis (ME) community as an angry, misguided mob using social media to denigrate scientific research. Both articles focus on the criticism that Dr. Michael Sharpe, one of the
The final report from Australia’s National Health and Medical Research Council’s (NHMRC’s) ME/CFS Advisory Committee, established in late 2017, has been released. The committee was tasked with advising NHMRC’s CEO on current needs for research and clinical guidance for ME/CFS in Australia.
Hello EU! The best way to combat a hopeless situation is to act! Please help us by signing a petition that asks the EU for increased funding for biomedical research into ME. There are about 2 million ME patients in the EU. That’s only an estimate, because reliable figures aren’t even available. But we know we
We’re so excited to announce we’re growing our community’s impact through the expansion of #MEAction USA’s formal State Chapters. #MEAction USA’s State Chapters build local capacity around volunteer engagement, congressional outreach, local and state advocacy, and medical education, and support awareness raising efforts for ME. State chapters also act as laboratories to incubate new ideas
I’m angry, but I’m not alone. Hi, my name is Ben HsuBorger, Director of Global Community and Campaigns for #MEAction, and I’m a person living with myalgic encephalomyelitis for over 14 years. I’m deeply grateful for the community and tribe I’ve found at #MEAction that remind me I’m not alone — and I want to
