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.
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
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
Over 1,700 people have now voted for their top ten ME/CFS research priorities in the UK. With the deadline fast approaching this is your last chance to join them and vote. Deadline Monday 13th December 5pm Vote now This process gives greater voice to people affected by ME/CFS to decide the direction of ME/CFS research
Darren Randon, co-founder of Well Versed Ink, is seeking new members for an online group for UK-based Black and Black-mixed adults living with diagnosed or suspected ME or Long-Covid. Formal diagnosis is not required. The group meets every other Sunday from 1-2pm. It provides a safe space to share experiences and create community, with the
NPR featured #MEAction in an article about long COVID called, “For patients with long COVID, chronic fatigue syndrome may offer a guiding star.” MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, speaks about how long COVID researchers and doctors must learn from the ME/CFS community. “People with chronic complex disease have been living with
Welcome to the jungle, the press jungle! It’s hot and noisy here, with news fresh off the press. Trying to get the attention of the media is not as impossible as legend had it! This is Adriane, and as your Press Scribe, I’m here to write our way through this next adventure and make sure
Hi, everyone! It’s Jaime, the Director of Scientific & Medical Outreach at #MEAction. During this week’s #MEAction Giving Adventure we swam through the Research Lagoon as we surpassed our second fundraising level of US $20,000/UK￡14,820. While our fundraising format this year is fun and lighthearted, the work #MEAction is doing to advance research and clinical
Over 1,000 people have now voted for their ME/CFS research priorities. People with ME/CFS, carers and clinicians in the UK are all asked to take part. The ME/CFS Priority Setting Partnership is particularly looking for more people from ethnic minorities, carers and health care professionals to take part. So far: Just 4% of respondents are
On Tuesday 30th November at 5pm, we’re holding a community Q&A, and will be joined by two of the NICE committee members, who have spent almost 3 years working on the new ME/CFS guideline.
