Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the
Tag: Myalgic Encephalomyelitis Chronic Fatigue Sydrome
We are thrilled to see the press tell our story of the #MillionsMissing this year, and the #MillionsMore “long haulers” expected to develop ME/CFS following a COVID-19 infection. In Pittsburgh, a mother of four told her story in the Tribune-Review about her 25-year journey of never recovering after contracting EBV, the virus that causes Mono.
#MEAction sent out a press release last week to alert media to the #MillionsMore developing ME following COVID-19. We invited 651 journalists in the U.S and 552 journalists in the U.K. to join our #MillionsMissing event this Wednesday, May 12th. Before COVID-19 long haulers there were the #MillionsMissing… Read the US Press Release Read the
We are gearing up for #MillionsMissing 2021! This year will be a week long event, from May 9 to 15, of action and activities to strengthen our community, and fight for recognition, research and medical education for myalgic encephalomyelitis (ME). Check out our website for the #MillionsMissing timeline of events, grab your t-shirt, and plan a local event! We
The ME community has had a lot of questions about whether it is safe to get a COVID-19 vaccine. ME/CFS experts from the Center for Complex Diseases, the Institute for Neuro-immune Medicine, the Bateman Horne Center and, in the UK, the ME Association have weighed in with their recommendations on this matter. Overall, clinicians are
On December 3-4, 2020, the National Institutes of Health (NIH) / National Institute of Allergy and Infectious Diseases (NIAID) hosted a virtual Workshop on Post-Acute Sequelae of COVID-19. We know acute COVID-19 has an extraordinary number of multisystem manifestations: pulmonary, cardiovascular, neurologic, psychiatric, musculoskeletal, endocrine, renal, hepatic, gastrointestinal, and dermatologic. The workshop’s goal was to
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
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
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).