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
12 Days of Pacing Begins Today! Welcome to #MEAction’s 12 Days of Pacing! For the next 12 days will work through what #StopRestPace really means and how to apply it practically in your life. We are excited to share some great tips from our amazing community along the way. We hope you will view this
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.
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.
Wow! So much has happened in the last three months. Between the historic change to the National Institute for Health and Care Excellence (NICE) guideline on ME, terrific articles featured in the press, the tedious work of holding US federal agencies accountable, the effort to enhance clinical care, the continued work of promoting new research,
Media coverage of the publication of the new NICE guideline in the UK was impressive in its geographical spread and range of publications who reported on the story. The volume of articles shows the importance of the new guideline and highlights the increased awareness of the issues amongst the UK media. #MEAction UK volunteers are
#MEAction’s FUND BOLD ACTION Campaign DONATE Start a letter writing campaign Reach out to your friends and family and share your story. Ask them to support our global movement for BOLD ACTION to bring recognition, education and research for people with Myalgic Encephalomyelitis (ME). You can: Start an Individual Fundraiser Send an email Send a text
Press Release After 14 years of recommending graded exercise therapy to people with myalgic encephalomyelitis (ME), the National Institute for Health and Care Excellence (NICE) has removed this harmful treatment from its new guideline on ME/CFS, released today. Sian Leary, spokesperson for #MEAction UK, highlights the importance of the new guideline: “This is a huge
After NICE held its roundtable to discuss the new ME/CFS guideline, Forward-ME (which #MEAction UK is a member of) have produced the below statement. Clinician and Patient Support Confirmed for new NICE Guideline on ME/CFS. On Monday, Forward-ME and member charities attended a roundtable to review the new ‘NICE guideline on ME/CFS’ with representatives from
After NICE’s roundtable, Janet Sylvester tells us: “I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic the guidelines will be published.”
