#MEAction UK response to draft ME/CFS guideline from NICE
December 21, 2020
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#MEAction UK volunteers have worked to produce a robust and comprehensive response to the draft ME/CFS guideline from NICE.
Author: #MEAction
Scottish Sunday Express Publishes Comment Piece about ME
December 16, 2020
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The Scottish Sunday Express published a Comment piece by Emma Shorter who shared her experience of getting a virus nine years ago and never recovering – as a warning and wake-up call for the government to adequately address long haulers who are not recovering from Covid-19. Read the article. Emma talks about how the practice
#MEAction Responds to the Observer Article Dismissing ME and Long Covid Patients as Hysterical
December 5, 2020
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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 joins Solve M.E. & 18 other orgs to author letter to congress
December 4, 2020
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#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 US spend more Money Researching diseases affecting men?
December 4, 2020
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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
Goodbye to graded exercise therapy but concerns about physical activity programmes – Community Discussion
November 30, 2020
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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.
“Loopholes need closing” – ME/CFS draft guideline community discussion
November 18, 2020
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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.
Important News from Jennifer Brea
November 12, 2020
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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!
U-Turn on ME/CFS Guidelines Could Help Long Covid Patients – Press Release
November 10, 2020
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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).
Long COVID Patients Warned of Damaging Exercise Programme
November 3, 2020
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#MEAction UK is highlighting the links between “Long Covid” and ME in the press. In particular, we want people at risk to know about the danger of exercise if they have post-exertional malaise.