Tag: Chronic Fatigue Syndrome

ME/CFS on TV (Part 3)

RETURN TO PART 1 OF THIS SERIES HERE ME/CFS ON THE ITALIAN TV SCREEN: A VIRTUOUS MODEL by Giada Da Ros Through sundry television spaces (news, fiction, talk shows), the ME/CFS community challenged existing political, medical, and philosophical approaches to the illness (and to maladies in general).  The community sought to re-appropriate the discourse, fight

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ME/CFS On TV (Part 2)

RETURN TO PART 1 OF THIS SERIES HERE “THAT’S WHY THEY DON’T BELIEVE YOU, YOU DON’T LOOK SICK!”: FICTIONAL REPRESENTATIONS OF ME/CFS by Giada Da Ros Sociologists emphasize the importance of social and cultural representation of social and cultural representation of chronic and emerging disease, both for individual and collective behavior. “(T)he fact that people

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ME/CFS on TV (Part 1)

ME/CFS IN EARLY TV DISCOURSE: QUESTIONING GOVERNMENTAL POLICIES AND CHALLENGING THE CONCEPTIONS OF DISEASE AND MEDICINE  by Giada Da Ros As patients who suffer from it well know, myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a life-altering, debilitating, chronic, systemic disease that frequently and dramatically limits the activities of affected patients (Open Medicine Foundation).

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NPR Features #MEAction in Series about Long COVID

NPR featured #MEAction in an article about long COVID called, “For patients with long COVID, chronic fatigue syndrome may offer a guiding star.”  MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, speaks about how long COVID researchers and doctors must learn from the ME/CFS community. “People with chronic complex disease have been living with

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Read about the research happening on ME and long COVID

#MEAction summarized the scientific talks about ME/CFS and Long COVID presented at the International Association of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME) Conference that took place last August.  We sent this summary of those talks to our database of journalists reporting on Long COVID this past October to underscore the parallels between the conditions,

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How the media reported on the UK’s new ME/CFS guideline

Media coverage of the publication of the new NICE guideline in the UK was impressive in its geographical spread and range of publications who reported on the story. The volume of articles shows the importance of the new guideline and highlights the increased awareness of the issues amongst the UK media.   #MEAction UK volunteers are

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Get Germany to 50K signatures – Anyone Can Sign!

A team of ME/CFS advocates have launched a petition to raise awareness about the dire situation in Germany. Help Germany get to 50,000 signatures by Tuesday, Nov. 9th and they will be granted a public hearing in the German Bundestag to finally draw attention to the issue of ME/CFS .  Anyone across the world can

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Thousands living with chronic illness ME are listened to after years of fighting to be heard – Press Release

Press Release After 14 years of recommending graded exercise therapy to people with myalgic encephalomyelitis (ME), the National Institute for Health and Care Excellence (NICE) has removed this harmful treatment from its new guideline on ME/CFS, released today. Sian Leary, spokesperson for #MEAction UK, highlights the importance of the new guideline: “This is a huge

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A Response to New Yorker Article on Long COVID

A person with ME (who wishes to remain anonymous online) sent this letter to the author of The New Yorker article, “The Struggle to Define Long COVID,” and to the magazine’s editor. #MEAction was also concerned to see The New Yorker publish such a disparaging and flawed article about the Long COVID community, which cherry-picked examples of

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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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