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The Failure of Clinical Guidance for People with ME

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 governments across the world

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The public testifies about ME

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 for decades without adequate

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U.S. Advisory Committee Holds Meeting on ME/CFS

We need you! #MEAction is looking for volunteers who can help our team ensure that the CFSAC recommendations are implemented, and don’t fall through the bureaucratic cracks. If you’ve worked for government agencies before, that is a bonus. We welcome all volunteers who can assist with keeping an eye on the work of this important

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NICE: Listen to the People

As the U.K. prepares to review its national clinical guidelines for ME, it is high-time that the National Institute for Health and Care Excellence (NICE) listens to the evidence showing that Graded Exercise Therapy (GET) is harming people with Myalgic Encephalomyelitis. Listen to the words of the words of the director of the National Institute of

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SMCI Holds ME/CFS Research Discovery Forum

The Solve ME/CFS Initiative (SMCI) held its second annual Discovery Forum Saturday October 14. The forum dubbed “a new era in ME/CFS research” brought together leaders from academia, government agencies, private clinics, biotech and research institutions to discuss developments in the field of ME/CFS research.

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Parliament EDM 271 Urges NICE to Update Guideline on ME

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. We still need you

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As Summer Ends, A Warning to NIH

Johanna Kaiser, a person with ME, sent this open letter over Labor Day to the director of the National Institutes of Health (NIH), Dr. Francis Collins, and the director of National Institute of Neurological Disorders (NINDS).

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