Covid-19 Resources for People with ME



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Resources for COVID-19 “Long-Haulers” from the ME/CFS Community

A growing number of people report persistent symptoms long after being infected with the SARS-CoV-2 virus. The "long-haulers," a name coined for long-term COVID-19 patients, experience ongoing fatigue, headaches, shortness of breath, muscle pain, sleep disturbances, cognitive impairments, intermittent fevers, and more. Many long-haulers reveal that these and other symptoms ...
researcher in lab examines chemical compounds

Report Part 2: NIH lacks coordinated response for long COVID research

The NIH is shaping research initiatives to study the long-term consequences of COVID-19 (long COVID), but it lacks the coordinated, outcomes-focused strategy necessary to deliver biomarkers and treatments to the people who need them. Editor’s note: This is part of a series on what the NIH is (and isn’t) doing ...

Letter to Burwell and Collins Demands Funding Equality

Uniting the ME/CFS community is not easy, but it has never been more important than right now. One thing we all agree on is the urgent need for vastly increased funding at the National Institutes of Health, our nation’s scientific research machine. When two federally funded reports told NIH that

Canary in a Coal Mine at Good Pitch New York

Canary in a Coal Mine at Good Pitch New York Dear friends, family and colleagues, This Tuesday, Canary – a documentary film about Myalgic Encephalomyelitis and Chronic Fatigue Syndrome – was one of seven film teams to present at Good Pitch New York, a gathering of foundations, NGOs, campaigners, philanthropists, policymakers, brands, technology,

David Tuller Tears Apart PACE Trial

Health scientist and New York Times published journalist David Tuller today launched a damning critique upon the UK’s £5 million PACE trial in an article published on the popular Virology Blog. The PACE trial was an open-label study of graded exercise therapy and cognitive behavioural therapy for chronic fatigue syndrome

Canary Live at Good Pitch New York

Canary in a Coal Mine will be one of seven films to take the stage at BRITDOC's Good Pitch New York on Tuesday, October 20th. It's a unique, live event that leverages a diverse audience to help build movements and campaigns around social issue films. Good Pitch brings filmmakers together with foundations, NGOs, campaigners, philanthropists, policymakers,
Newcastle UK university building

Muscle defect studied in UK

Patients in the UK's north east will benefit from muscle abnormality research put into action via hospitals.

CDC Funding Update from SMCI

SMCI Meets with Senate Appropriations Staff The Solve ME/CFS Initiative has posted an
Viral disease scientist Dr Rider MIT

Visionary viral disease treatment needs funding

Imagine a drug that could treat almost any viral disease. We may only be a few years' away, thanks to Dr Rider at MIT.

Neurology Now writes about CFS

Neurology Now on CFS Neurology Now recently posted an article targeted at neurologists with the headline "Beyond Tired: Is chronic fatigue syndrome a real medical condition? Yes, according to a report from the Institute of Medicine, which urges physicians to treat it accordingly."  The piece is primarily focused on the

UK CMRC conference on October 13 and 14

UK CMRC conference to be livestreamed on 13 and 14 October Parts of this year’s UK CFS/ME Research Collaborative (CMRC) international conference, which will be held in Newcastle on Tuesday the 13th and Wednesday the 14th of October, will be livestreamed by the charity Action for ME. The conference has

Push to change ME/CFS NICE guideline

Minutes just released for the 15 July 2015 meeting of the cross-charity Forward-ME group record a discussion with Dr Martin McShane of NHS England on getting him to recommend that the NICE guideline on ME/CFS should be revised. The guideline, which should be based on the best available scientific evidence,

The Atlantic publishes a nuanced push for public funding

The Tragic Neglect of Chronic Fatigue Syndrome With a surprisingly broad-ranging and detail-rich article by Olga Khazan entitled "The Tragic Neglect of Chronic Fatigue Syndrome," The Atlantic became the latest national publication to inform its readers about the severity of disease impact, dearth of medical understanding and treatment, lack of

Autoantibodies found in subset of CFS patients

A new German study published in Brain, Behavior, and Immunity by Loebel, et al. has found that Chronic Fatigue Syndrome* may be an infection-triggered autoimmune disease, at least in a subset of patients studied. Samples from a large cohort (n=268) in Berlin and a smaller sample of patients treated with Rituximab (n=25)