Category: Petitions

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

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NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

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Sign Our Petition: Publish the NICE ME/CFS Guideline Now.

We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form.  Sign the petition On 18th August 2021, NICE were due to publish their newly developed ME/CFS guideline. It would have transformed the care people with ME receive in the UK and abroad. But

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text: fail

NIH & CDC leadership are failing people with ME/CFS

#MEAction has written an open letter to NIH institute director, Dr. Walter Koroshetz, and CDC division director Dr. Inger Damon to express our lack of confidence in their interagency approach to ME/CFS. Drs. Koroshetz and Damon co-lead the Interagency ME/CFS Working Group, which met last month, and oversee the ME/CFS program activities within their respective

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Evelien Van Den Brink laying down, hopefully and clearly looking at the camera.

The EU Committee on Petitions is preparing a resolution on ME

Hi everyone! Time for an update: We have super important news! The Committee on Petitions is preparing a resolution on ME! This is the first-ever resolution on ME in the EU and if adopted, this means a great leap forward towards our goal of attaining funding for biomedical research on ME.  It is planned to

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Three members seated and speaking at the Public Petitions Committee Meeting

#MEAction Scotland’s Petition: Progress Continues

On Thursday 19th December, 2019 the Scottish Parliament’s Public Petitions Committee met to continue its consideration of  #MEAction Scotland’s petition, PE1690, which calls for a review of treatment of people with myalgic encephalomyelitis (ME) in Scotland. Appearing before the committee to give evidence were Jeane Freeman, the Scottish Government’s Cabinet Secretary for Health and Sport,

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Evelien’s Journey to Meet the EU Parliament

Hi everyone! First of all I would like to express my heartfelt thanks to all who contributed to the success of the petition that asks for the EU to fund biomedical research on ME. So many people helped out by writing to their MEPs, translating documents, making phone calls, sharing the news and signing the

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Sign a petition to ask the EU for funding for biomedical research

Hello EU! The best way to combat a hopeless situation is to act! Please help us by signing a petition that asks the EU for increased funding for biomedical research into ME. There are about 2 million ME patients in the EU. That’s only an estimate, because reliable figures aren’t even available. But we know we

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Join the fight against stigma and pseudoscience in New York

This weekend, the New York State Psychiatric Institute is hosting a conference on psychosomatic illness at Columbia University Medical Center — and they invited Per Fink to speak.  If you have watched Unrest, you know that Fink’s clinic was responsible for the involuntary institutionalization of Karina Hansen, a Danish young woman with ME.   [pullquote

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