Category: Advocacy

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NIH Long COVID research lacks clear plan to identify and track ME/CFS

MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research agenda lacks a clear plan for how to accurately identify or consistently track the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases among patients with Long COVID. This is of particular importance because a sizable fraction

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The Last Two Years Changed the World…

What a year 2021 was! People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding from clinicians, NIH’s and CDC’s low budgetary commitments, and a world of challenges navigating disability on top of symptoms.  It’s no exaggeration to say that 2020 and 2021 changed the world – and the world of chronic,

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CDC decides not to publish flawed ME/CFS treatments review!

As we enter the holidays we have a positive development to report coming out of yesterday’s ME/CFS stakeholder call with the U.S. Centers for Disease Control and Prevention (CDC). CDC has announced that it will not publish a systematic evidence review of ME/CFS treatments by the Oregon Health Science University Evidence-based Practice Center (EPC) in

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#MEAction Arrives in the Medieval Town of Med-Ed

Here’s a hearty hello from the Medieval Town of Medical Education!  Lords and Ladies,  We did it!… we got over $75,000 (£56,781) which means we have arrived at this new land on our Giving Adventure Map. I’m Laurie Jones, the Managering Elf, and I am going to tell you what awesome stalls await you at

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NICE Committee Member Community Call Review

Two NICE ME/CFS guideline committee members joined #MEAction for a community call, to provide their insight into the guideline process and answer questions. Adam Lowe is a person with ME and has been supporter of various ME organisations, including #MEAction UK and Science for ME. He was one of five lay members on the committee.

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NICE Retweeted #MEACTION UK's DEAR DOCTOR CAMPAIGN

NICE Retweeted #MEAction UK’s Dear Doctor Campaign!

On November 12th, just a few days after our launch of the Dear Doctor Campaign, @NICEGetInvolved retweeted our campaign and shared their thanks in our work to educate the medical establishment about the new guideline. This is cause for celebration! This is the start of a real change that has begun in how we are

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CDC must act now to stop flawed review of ME/CFS treatments

In advance of next week’s CDC ME/CFS Stakeholder Engagement and Communication (SEC) call, #MEAction has sent a letter to Chronic Viral Diseases Branch Chief Dr. Elizabeth Unger requesting her to clearly and directly address our four key objections to publishing a flawed evidence review of ME/CFS treatments that CDC commissioned. Read Letter The review wrongly

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#MEAction’s work in the Forest of Federal Agencies

Hey folks, it’s me Ben. During this week’s #MEAction Giving Adventure we moved through the Forest of Federal Agencies as we surpassed our first fundraising level of US$15,000/UK£11,178. While this fundraising adventure is all about putting the FUN in Fundraising, the work #MEAction has done within US Federal Agencies has been imperative to improving the

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Tell your Doctor that GET is gone

The updated NICE guideline on ME/CFS contains substantial changes that alter the treatment and management of people with ME in England and Wales*. We need your help to tell doctors and other medical staff that the recommended treatments for people with ME have changed. We want to get the message out that there are new

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Get Germany to 50K signatures – Anyone Can Sign!

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

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