COVID-19 has significantly changed our lives in so many ways. With the recent increase in funding to study long COVID, there is understandably mixed-feelings in the ME community. While everyone wants those with long COVID to have the success people with ME so desperately deserve, for some, there is a fear of ME being lost
#MEAction has written to the Chief Medical Officer and the Joint Committee on Vaccination and Immunisation to call for ME to be included on the vaccination priority list.
Editor’s note: This update is provided by Thane’s care team. UPDATE: Friday, February 5 , 2021 Thane was released from the hospital today and is home! j UPDATE: Wednesday, February 3 , 2021 Thane’s lawyer shared with us that the evaluation went very well on Monday morning. Thane agreed to a “continuance for dismissal,” which means that
PwME appeals for help “They’re trying to commit me to a mental health ward with very severe ME… I need help.” This how a brief and urgent email appeal to #MEAction began last Friday. The email was from Thane Fredrickson (also known as Thane Black on social media), a person with very severe ME who
#MEAction UK volunteers have worked to produce a robust and comprehensive response to the draft ME/CFS guideline from NICE.
#MEAction UK has just received a momentous email from the National Institute for Health and Care Excellence (NICE), advising us that they have updated the warning on the 2007 CFS/ME guideline, directing health professionals to the new draft recommendations on graded exercise therapy.
1. “Good practise” guidelines for ME/CFSThe Finnish Medical Society Duodecim published in November a draft for new guidelines for ME/CFS for open consultation. The deadline was 4.12 and the final Hyvä käytäntö / Good practise guidelines will be published beginning of 2021. The timing was good as the historic NICE guidelines for ME/CFS (draft) were published in
#MEAction is proud to join Solve ME/CFS Initiative (Solve M.E) and 18 other chronic disease stakeholders to sign a strong letter to Congress asking them to urgently prioritize long COVID and post-viral disease funding in future Congressional COVID-19 relief packages or appropriations agreements. The goal of the letter is have Congress fund millions of dollars
Last week the U.S. National Institutes of Health (NIH) announced it will hold its next ME/CFS Telebriefing on Thursday, Nov. 5 at 11am Eastern Time. #MEAction staff and volunteers worked quickly to draft a letter with detailed questions for NIH in advance of this meeting. You can read the full letter here. We will keep
#MEAction State Chapters have been busy this year working to expand awareness, build support for House Bill H.R. 7057, and contribute to the Stop. Rest. and Pace. campaign, and provide much needed support to their communities during this unpredictable time. We are excited to share what they have been working on and remind those reading
