Tag: Myalgic Encephalomyelitis Chronic Fatigue Sydrome

Connecting Black People with ME and/or long Covid in the UK

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

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Global media tells the story of the #Millionsmissing

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.

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#MEAction Sends Press Release About #MillionsMissing

#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

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2021 MillionsMissing announcement for the week of May 12th

Get ready for #MillionsMissing

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

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Person getting a vaccine shot

ME Experts recommendations for getting A Covid-19 vaccine

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

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NIH Hosts Workshop on Long COVID – Read the Summary

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

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Scottish Sunday Express Publishes Comment Piece about ME

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

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Doctor holds stethoscope bell with the Finnish flag. Healthcare in Finland

Advocacy Update from Finland

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

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