Tag: Myalgic Encephalomyelitis

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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New Black British support group seeks members with ME and Long Covid

Darren Randon, co-founder of Well Versed Ink, is seeking new members for an online group for UK-based Black and Black-mixed adults living with diagnosed or suspected ME or Long-Covid. Formal diagnosis is not required. The group meets every other Sunday from 1-2pm. It provides a safe space to share experiences and create community, with the

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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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Join over 1,000 people and vote for your ME/CFS research priorities

Over 1,000 people have now voted for their ME/CFS research priorities. People with ME/CFS, carers and clinicians in the UK are all asked to take part. The ME/CFS Priority Setting Partnership is particularly looking for more people from ethnic minorities, carers and health care professionals to take part. So far: Just 4% of respondents are

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UK Parliamentary Group to discuss new ME/CFS guideline

The next meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME) will take place from 2 – 3 pm on 24 November 2021. Email your MP asking them to attend, and help to ensure the new ME/CFS guideline is implemented. Find their contact details at: https://members.parliament.uk/FindYourMP This meeting will focus on the

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Tell your Doctor that GET is gone

The updated NICE guideline on ME/CFS contains substantial changes that alter the treatment and management of people with ME in England and Wales*. We need your help to tell doctors and other medical staff that the recommended treatments for people with ME have changed. We want to get the message out that there are new

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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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