Category Archives: Uncategorized

NICE: Listen to the People

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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 ...
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 ...

NICE 2017 response

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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 ...

How to Build a Protest

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Learn from the success of the #MillionsMissing protests that galvanized dozens of cities around the world to take to the streets and demand their governments stop the neglect of people with ME. Read the full guide here.   ...

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 ...

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

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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 ...

Proclaim it Loud: States Issue Resolutions for ME

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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 ...

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

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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 ...

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

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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 ...

Contact your local journalist about #BedFest

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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 ...
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