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Category Archives: Advocacy

A petition cloaked in the respectability of research

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#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 ...

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

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In the past two weeks, 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 key authors of the PACE trial ...

Australia’s ME/CFS Advisory Committee Releases Final Report

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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 the petition to ask the EU for increased funding for biomedical research into ME

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

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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 ...

#MEAction Launches its U.S. State Chapter Initiative

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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 ...

I’m angry, but I’m not alone. 

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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 -- ...
People travelled from all over Scotland to attend #MillionsMissing Glasgow

Hundreds gather for #MillionsMissing Glasgow

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#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 ...

Thank The Senate Resolution Co-Sponsors!

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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 ...

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

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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 ...

We are building a movement at #MEAction UK. Join us!

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#MillionsMissing - organised by #MEAction - has been such a successful campaign this year, and we thank everyone in the ME community for your part in this. At #MEAction UK we are building a movement. We’ve grown #MillionsMissing, a campaign for health equality for ME, from a single protest in London ...