Research Roadmap Petition
May 7, 2025
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We reached 7,000 signatures on our last letter. This time, our goal is 10,000. Please sign the letter today and share it with your friends and family.
Category: Petitions
Get Germany to 50K signatures – Anyone Can Sign!
November 2, 2021
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A team of ME/CFS advocates have launched a petition to raise awareness about the dire situation in Germany. Help Germany get to 50,000 signatures by Tuesday, Nov. 9th and they will be granted a public hearing in the German Bundestag to finally draw attention to the issue of ME/CFS . Anyone across the world can
Sign petition To Fix ME/CFS tracking In US!
September 13, 2021
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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
NICE announces roundtable event to ensure implementation of ME/CFS guideline
August 27, 2021
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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
Sign Our Petition: Publish the NICE ME/CFS Guideline Now.
August 19, 2021
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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
NIH & CDC leadership are failing people with ME/CFS
March 30, 2021
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#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
The EU Committee on Petitions is preparing a resolution on ME
February 5, 2020
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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
#MEAction Scotland’s Petition: Progress Continues
January 17, 2020
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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,
Evelien’s Journey to Meet the EU Parliament
October 18, 2019
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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
Brussels will Discuss EU Petition to Fund Biomedical Research for ME
September 18, 2019
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Great news! Remember the petition that asks the EU to fund biomedical research on ME? It will be discussed at the meeting of the Committee on Petitions on October 3rd 2019 in Brussels! It is scheduled for discussion at around 11:05 CEST. Francis and Evelien have been working on this project for over a year