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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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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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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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NICE 2017 response

10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (2007) NICE guideline CG53 Stakeholder consultation comments form – proposal for ‘no update’ Consultation on the proposal for ‘no update’ opens on: 9am Monday, 10 July 2017 ​ Comments on proposal to be submitted: no later than 9am Monday, 24 July 2017 Organisation name

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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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City Proclamation for ME: How-To Guide and Case Study

Timbre Livesay and Mary Dimmock contributed to this article. This is an outline of the steps a California ME advocate, Mark Camenzind, took for getting city proclamations for ME. Below the steps is a template you can use for your own city proclamation. Feel free to adapt either for your city’s needs. As this is

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Proclaim it Loud: States Issue Resolutions for ME

Government moves slow. Any action requires lengthy processes – all of the checks and balances intended to create better, more deliberate legislation. Activists for Myalgic Encephalomyelitis (ME) across the country understand the sausage-making well as they have sought for their state legislators to recognize the urgent challenges facing ME, including the dearth of funding, complete

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State Resolution for ME: How-to Guide and Case Study

Rivka Solomon and Mary Dimmock contributed to this article This document includes the steps ME advocates are taking to get a State Resolution for ME passed in their State House (aka State Assembly or State Legislature). It also includes a draft template of a resolution for you to use in your state. Why pursue a state

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CA Senate will Vote on Resolution for ME/CFS Thursday – Call your Senator!

California – A resolution to proclaim May as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Awareness (ME/CFS) Month will go before the California Senate this Thursday. Now, is a great time to educate your California Senator about ME/CFS, and let them know that you are a constituent who cares about this cause. Even though the resolution (which

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Contact your local journalist about #BedFest

Invite a journalist to cover the story of #BedFest in which artists with Myalgic Encephalomyelitis from all over the world have come together – many of them bed or homebound – to express themselves and showcase their music, art and poetry. Share the #BedFest website with your journalist – a living gallery and concert hall of art by people with

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