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
Last Sunday, the Observer published an article called, “Long Covid: Is This Now Me Forever?” that derides and stigmatizes both the long Covid and ME community as falling prey to a disease-mindset and catastrophic thinking. Just another hysterical women’s disease. #MEAction sent the following letter to the editor at the Observer, asking them to
#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
Does the U.S. spend more money researching diseases that primarily affect men? The answer is emphatically yes, according to an article published in the Journal of Women’s Health by Art Mirin, chair of #MEAction’s California State Chapter. In his research, Dr. Mirin found that the National Institutes of Health (NIH) gives a disproportionate share of
Below, we chat with Superbloom founder, Erin Berman, about her own struggle with chronic illness, hopes for Superbloom, and her issue with “positive washing.”
There were significant concerns about the recommendation of a physical activity programme in the draft ME/CFS guideline, even with the caveats attached. The recommendation that a physical activity programme should be considered if patients would ‘like’ to start one, was felt to imply that there is a choice or a desire involved, rather than increased physical activity being impossible for many.
At our first community call on the draft ME/CFS guideline from NICE, training in all areas of the guideline was seen as key if it is to have an impact on the health and social care professionals implementing these recommendations.
Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board position so she can take time to focus on her health after five intense years of ME and advocacy. This will not happen immediately- we will be working hard to find a new Executive Director first!
Harmful graded exercise therapy for people with ME has been dropped in a new draft ME/CFS guideline from the National Institute for Health and Care Excellence (NICE).
We’re thrilled to announce the winners of our postcard design contest for our second annual Postcards to Doctors campaign! We received over 100 submissions from 40 people by the October 5th deadline. We were so impressed by the beauty, cleverness, and skill on display in these wonderful pieces. It was no small feat to choose just
