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Long COVID Main Page

Long Covid & ME Understanding the connection When the SARS-CoV-2 pandemic began, disability advocates sounded the alarm: acute viral infection leads to chronic illness in a significant number of individuals. Dr. Fauci repeatedly warned of the risk patients would develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Like many other neurological diseases, up to 80% of cases

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Research Update: The NIH Intramural ME/CFS Study

National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are writing up their findings and plan to circulate a draft among their large team of scientists and physicians for feedback soon.  “The study will help patients and should move the field forward in

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2022 MillionsMissing May & September

#MillionsMissing 2022 Fundraiser

#MillionsMissing 2022 DONATE 100% Amount raised $188,554 (£156,356) time until end of fundraiser 00Days 00Hours 00Minutes 00Seconds Support our #MillionsMissing 2022 Giving Campaign. Our goal: US$200,000 (£157,244) by June 15th. DONATE #MEAction is dedicated to advocating with and for people with ME. It is at the center of all we do. Whether that is through

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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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Chronically Complex: The #MEAction Podcast

If you’re new to myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), we’re here to tell you that you are not alone. There are millions of others like you. At #MEAction, our mission is to advocate for people with ME to raise awareness, educate, and fight for better access, better treatments, and

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Facets of ME: Cognitive Dysfunction

Welcome to our second Facets of ME! This is an educational feature in which we choose one aspect of ME to dive into and explore more in-depth once a month. Our goal is to keep it understandable while still providing a great overview and links to even more detailed information.  The facet of ME that

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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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Facets of ME

We are excited to launch an all-new educational feature – Facets of ME! We will be diving into the multiple facets of ME/CFS including symptoms, comorbidities, practical tips, and more. Our goal is to take the first Friday of each month and delve into one particular facet of ME in a way that is easy

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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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The Last Two Years Changed the World…

What a year 2021 was! People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding from clinicians, NIH’s and CDC’s low budgetary commitments, and a world of challenges navigating disability on top of symptoms.  It’s no exaggeration to say that 2020 and 2021 changed the world – and the world of chronic,

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