#MEAction, Author at #MEAction Network

#MEAction Responds to the Observer Article Dismissing ME and Long Covid Patients as Hysterical

December 5, 2020 6 Comments

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

21 Chronic Disease Stakeholders Send Letter to Congress

#MEAction joins Solve M.E. & 18 other orgs to author letter to congress

December 4, 2020 1 Comment

#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 No Comments

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 No Comments

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.

twenty photos of people attending the call are on screen

“Loopholes need closing” – ME/CFS draft guideline community discussion

November 18, 2020 No Comments

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 13 Comments

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 5 Comments

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 2 Comments

#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.

Meet the Volunteers: Denise and Mal

November 3, 2020 No Comments

We are winning the awareness battle – there is a way to go yet, but society is taking ME more seriously now than even 4 or 5 years ago.

photo of a person holding mobile phone showing news

Meet the Long Haulers Developing ME/CFS

October 30, 2020 No Comments

#MEAction sent out a press release last week to 300 major publications in the US introducing them to the long haulers who are experiencing symptoms of myalgic encephalomyelitis (ME), specifically post-exertional malaise. We alerted the press to the terrifying possibility that 1 million more Americans could develop ME following COVID-19 at the current rate of

Author: #MEAction