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Scotland: Review Treatment of People with ME Petition

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On Thursday, 8th November, the Scottish Parliament Public Petitions Committee met to review evidence submitted in support of various petitions, including #MEAction’s petition: PE01690 Review Treatment of People with ME in Scotland. Submitted by Emma Shorter, on behalf of #MEAction Scotland, in June this year, the petition called on the ...

Ten Organizations Ask Congress to Create Legislation for ME/CFS

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On Friday, November 2nd, #MEAction, the Solve ME/CFS Initiative, and eight other ME/CFS organizations sent a letter to our champions in the House of Representatives - Representatives Eshoo (CA18),  Lofgren (CA19), McGovern (MA02), and Raskin (MD08) -  requesting that they create legislation for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) ...

Alphabet Soup: Read the Latest about our U.S. Health Agencies and M.E.

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There are a lot of moving pieces to keep track of as we push for our U.S. federal agencies to provide fair and adequate treatment to people with myalgic encephalomyelitis (ME). Together, our community continues to take action to fight for our lives, and we’re seeing the fruits of that

UK: MPs fight for a crucial parliamentary debate on ME

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Carol Monaghan MP presented her application for a debate on ME to the Backbench Business Committee on Tuesday October 30th supported by Nicky Morgan MP, Steve Pound MP and Kelvin Hopkins MP. The application was also supported by over 30 other MPs from across the political divide at a crucial

Honoring Our Elite Seniors: 70+

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We are a group of people over the age of 55 with ME. In August, Bob Gawron wrote our first article introducing us to the ME community. At that time we had 520 members from around the globe. In less than 3 months we have almost doubled our membership. We

Australia: National TV Program Debates ME/CFS, Raises Ire of Community

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Australia: An hour-long, nationally televised discussion panel on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) on Oct. 16 has raised the ire of many in the patient community, who claim the program overrepresented the likelihood of recovery from the illness, and promoted harmful graded exercise therapy (GET). Insight is a weekly

UPDATE: Cochrane Has NOT Removed “Exercise Therapy for CFS” Review

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It appears that Cochrane will NOT temporarily remove a review from its database that claims exercise therapy is effective for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME), as a report in Reuters had indicated last week. Instead, Cochrane editors have added an editor's note (that is all but invisible unless you

#MEAction Scotland launch their Manifesto

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After many, many months of writing, editing and revising, #MEAction Scotland is finally ready to launch its manifesto! Thank you to all the volunteers and members of the community who have added their ideas and thoughts to shape this document. The purpose of this document is to highlight those areas

Mary Gelpi Sends 50K Petition to NIH Director, Francis Collins

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Mary Gelpi first published this post on her blog, 25 Pills a Day. Mary launched a petition asking the director of the U.S. National Institutes of Health, Francis Collins, to increase funding to 100 million annually for ME/CFS. She just sent a large box containing the petition and 50,000 signatures

Cochrane Temporarily Removes Review of “Exercise Therapy for CFS”

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Cochrane has temporarily removed a review from its database that claims exercise therapy is effective for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). Cochrane is a database of medical reviews and meta-analyses, which medical providers around the world rely on for diagnosing and treating disease. Their review, Exercise Therapy for

The final NICE scope is here: read our analysis

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N.b. We wrote this article prior to more of the appointments for the guideline development committee being made. Some of these appointments are inappropriate and we are working on a response to that. There are still some committee vacancies that have yet to be filled. We’ll update everyone as soon

New York #MEAction Protests Per Fink at Columbia University – Here’s what happened

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The protest against the Danish physician, Per Fink, last week demonstrates how our community takes action in a variety of ways to fight for people with myalgic encephalomyelitis (ME). 1) #MEAction New York organized a protest outside the conference where Fink was presenting on his unscientific theory of Bodily Distress

#MEAction keeps up the political heat of ME in the UK Parliament

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A productive and extremely positive meeting on the current developments on ME in the UK took place on Monday, 22nd October in the UK Parliament. Carol Monaghan, MP, and David Tuller, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health,

It has been an Intense Week!

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It Has Been A HUGE Week in the U.S.! This last week has been a bit of a whirlwind – we've never been busier! It's been a week of advancing the cause of health equality for people with myalgic encephalomyelitis through the launch of the Unrest continuing medical education program and the expansion of our US