Category Archives: Policy

Watch the Westminster Hall debate on PACE

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A Westminster Hall debate on the PACE trial will take place on Tuesday, 20th Feb., from 11 to 11:30 a.m. Carol Monaghan MP has secured the debate. Watch the Debate or Attend the Debate Follow the debate on Twitter by following @meactnetuk or @MEActNet. The debate will discuss the flawed science behind PACE, and how ...

What ME Activists Can Learn from the AIDS Crisis

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I read "How To Survive A Plague: The Inside Story of How Citizens and Science Tamed AIDS" by David France to learn lessons from the AIDS movement that could help ME activism, and to summarize it for people without the energy and/or time to read it. The book tells an ...

Post-Exertional Malaise & GET in ME/CFS – a guide to the research

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A member of #MEAction Network Australia has written a primer, outlining the flaws in the GET research and explaining why GET is likely to be harmful for people with ME/CFS ...

Urge your MP to Attend Westminster Hall Debate on PACE

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A Westminster Hall debate on the PACE trial has been scheduled for Tuesday, 20th Feb., 11-11:30 a.m. Carol Monaghan MP has secured the debate. Please urge your MP to attend the Westminster Hall debate to learn about the flawed science behind PACE, and how it has affected policy on Myalgic Encephalomyelitis ...

UC Berkeley will Host Unrest Screening

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Calling all people in the Bay Area - and beyond, You are invited to attend a screening of the Oscar-nominated documentary, Unrest, hosted by UC Berkeley's School of Public Health on Feb. 20th. Register for the FREE event today. Please take this opportunity to invite your Congressional and State representatives to educate them about Myalgic Encephalomyelitis. You ...

The Failure of Clinical Guidance for People with ME

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ME advocate Mary Dimmock has written a comprehensive report about the flawed science that led to the recommendation of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) for people with Myalgic Encephalomyelitis.  The patient community has long reported these treatments to be ineffective and harmful, and, yet, health societies and ...

The public testifies about ME

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Dozens of people with Myalgic Encephalomyelitis and family members testified about the disease last December before the government agency responsible for advising Health and Human Services on ME/CFS – the Chronic Fatigue Syndrome Advisory Committee. Speaker after speaker testified about the incredible neglect from the government for the millions of Americans suffering ...

Don’t Miss the CFS Advisory Committee Meeting This Wednesday & Thursday

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CFSAC is Wednesday (12/13) and Thursday (12/14) of this week! Please stand with us as we continue to urge the U.S. government to fund ME fairly and equally. View the calendar event here. This Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting will take place at the Hubert H. Humphrey Building, 200 Independence ...

#MEAction Launches First New York Organizing Meeting

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With the excitement and attention around the theatrical premiere of 'Unrest' in NYC this month now is the time to take ME advocacy and activism to a new level in New York. Over the past year there has been increasing progress at the state level. Last fall a #MillionsMissing protest was ...
Parliament EDM 271 Urges NICE to Update Guideline on ME

Parliament EDM 271 Urges NICE to Update Guideline on ME

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UPDATE On 20th September, NICE overturned the original proposal and announced it would review its guideline on ME. This is great news but means we need to double our efforts to make sure that the new guideline is robust enough to protect and help people with ME for generations to come ...
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