Tag: Myalgic Encephalomyelitis

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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Covid-19 has worsened our ME, report survey respondents

Read the first findings from the survey #MEAction UK and #MEAction Scotland are conducting with Action for ME to gather evidence of the impact of Covid-19 on people with ME. Preliminary Report The aim of the survey is to provide data that can be used, along with personal stories, to help our campaign to make

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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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NHS England omits advice to apply clinical judgement re vaccine

It has come to light that a letter from NHS England and NHS Improvement to all vaccination centres and GPs in the UK has omitted advice that health professionals can and should apply their clinical judgement when placing people in group 6. Vaccination of people with underlying health conditions that put them at risk of

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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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