Category Archives: Policy

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 ...

Urge your MP to sign EDM 271!

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We need your help for parliament to recognise the strength of feeling about NICE guideline review ...

Update on the NIH Research Funding totals from SMCI

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The Solve ME/CFS Initiative is disappointed to report that the projected estimates for FY 17 are being reported at lower numbers than expected ...
THE PACE TRIAL: THE MAKING OF A MEDICAL SCANDAL

THE PACE TRIAL: THE MAKING OF A MEDICAL SCANDAL

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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 ...

#MEAction UK response to NICE 2017

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#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 ...

Jennie Spotila: NIH’s management of conflict of interest

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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 ...
David Tuller: "I am committed to seeing this effort through to the end"

Tuller on PACE Investigation Plans: Not Beholden to Anyone

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#MEAction sat down with David Tuller recently for a wide-ranging discussion about the crowdfunding effort to help him continue his PACE investigations, the devastating stories he has heard from patients around the world, the poor media coverage of the PACE Trial flaws, and the ideal end result of all of the work ...

Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I

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One of my deeply held personal values is that ALL people must be treated  respectfully…I have found that respectful, highly knowledgeable, forceful advocacy language that expresses the desperate needs of our community is the most effective. But please do not mistake my professional, respectful demeanor as anything less than a ...
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