Advocacy Archives

Category: Advocacy

California Activists Fight for Centers of Excellence for ME

August 27, 2019 No Comments

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

A petition cloaked in the respectability of research

August 5, 2019 No Comments

#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.

#MEAction Responds to Attacks on ME Community in The Guardian and Psychology Today

August 1, 2019 4 Comments

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

Australia’s ME/CFS Advisory Committee Releases Final Report

July 22, 2019 No Comments

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.

Sign a petition to ask the EU for funding for biomedical research

July 17, 2019 12 Comments

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

#MEAction Launches its U.S. State Chapter Initiative

June 27, 2019 No Comments

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.

June 19, 2019 No Comments

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

Hundreds gather for #MillionsMissing Glasgow

May 30, 2019 No Comments

#MillionsMissing Glasgow on 12 May, 2019, was a huge success, and took place in glorious sunshine which is fairly unusual for this Scottish city! A crowd of around 400, many of whom had travelled from across Scotland, heard people with myalgic encephalomyelitis (ME) speak about their experience of the illness. There was music from local

Thank The Senate Resolution Co-Sponsors!

May 30, 2019 No Comments

Thank The Senate Resolution Co-Sponsors! This past weekend we celebrated the passing of the bipartisan Senate Resolution, S.Res. 225, in honor of International ME/CFS Awareness Day. Now is the time to thank the lead sponsors, Senator Markey and Collins, plus the other 13 Senators who co-sponsored this historic resolution!! Two Ways to Show Your

Read #MEAction’s Request for Information response to the NIH

May 21, 2019 No Comments

The story so far NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request for Information, from the ME community on how to advance research for myalgic encephalomyelitis. With only a few weeks’ turn-around, the #MEAction NIH working group produced a compelling response based on information conveyed in