Category: Advocacy

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

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 Avenue, S.W., Washington,

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#MEAction Launches First New York Organizing Meeting

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 held in front of

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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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THE PACE TRIAL: THE MAKING OF A MEDICAL SCANDAL

Journal of Health Psychology Special Issue on The PACE Trial, Vol. 22,  No 9, Aug. 2017 Publication date: 31 July 2017 http://journals.sagepub.com/toc/hpqa/current   A Special Issue of the Journal of Health Psychology on the PACE Trial, is to be published and freely available online on Monday 31 July 2017. It marks a special contribution of

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#MEAction UK response to NICE 2017

#MEAction UK response to NICE 2017 Background information UK clinical guidelines are written by a body called the National Institute for Health and Clinical Excellence (NICE). The current guidelines were last revised in 2007 and contain recommendations that people with ME consider unsuitable and potentially harmful. These guidelines also impact how ME is perceived in

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Jennie Spotila: NIH's management of conflict of interest

EDITOR’S NOTE: This reporting is written by Jennie Spotila Next week, the NIH will convene a peer review panel to evaluate and score the applications submitted under the Data Center and Collaborative Research Center RFAs. NIH’s management of conflict of interest is key to understanding who is – and who is not – on the

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