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 ...
Female on a treadmill with medical equipment

Treadmill test shows who Ampligen may help

Hemispherx Biopharma research shows that CFS patients who can perform more than 9 minutes on a treadmill are more likely to benefit from Ampligen.

CFSAC – to be or not to be

CFSAC- Let's Take Action ME community members were caught off guard when the proposed 2016 Senate appropriations bill zeroed out CDC funding for CFS research. Several advocates scrambled to address this and their efforts to be heard appear to have paid off. But scrambling is not something ME advocates can, or

Chronic Fatigue Syndrome Advisory Committee (USA) recommendations

USA's CFS Advisory Committee wants bigger research, aimed at finding diagnostic tests, using Canadian Consensus Criteria and private-public partnerships to find drug treatments. It asks for $250 million annually, estimating ME/CFS costs the US up to $24 billion.

Hidden Faces of M.E.

UK charity Action for M.E. are this week hosting a social media campaign and its aim is to raise awareness of M.E. as a hidden illness among as wide an audience as possible, and to help people understand what having M.E. feels like. The all important message being, ‘there is
Validity of Chronic Fatigue Syndrome bolstered by research

Validity of Chronic Fatigue Syndrome bolstered by research

Written by Brent Handel Originally published in The Lawyers Weekly June 26 2015 issue, reprinted with permission Chronic fatigue syndrome/myalgic encephalomyelitis, commonly referred to as ME/CFS, is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort.

Study shows immune differences in moderate and severe CFS/ME

New Australian study shows immune difference in moderate and severe patients. It may lead to a test based on these markers.

This Video Could Save your Life

The Use of Patient Blogs as a Care Resource Thanks to Greg Crowhurst for his incredibly kind review of my presentation on his blog and for giving permission for me to share his review on the #MEAction site: "My heart goes out to anyone newly diagnosed with "ME", Myalgic Encephalomyelitis,

An interview with lead singer of Belle and Sebastian – on life with M.E.

Stuart Murdoch talking openly about his experiences of M.E., Los Angeles, August 2015 “This is a pop band that sprang out of infirmity.” Stuart Murdoch in a great article from The Guardian December 2014 “Critics love Belle and Sebastian, they always have.” Daily Post September 2015 The Solve ME/CFS Initiative

Julie Rehmeyer on Science and ME/CFS

Julie Rehmeyer on Science and ME/CFS Julie Rehmeyer, an award-winning science and math writer, was recently interviewed about how her experience with ME/CFS has affected her perspective on science. The insightful piece ranges from a discussion of how the CDC's treatment of ME/CFS has lessened her trust of institutions of science

MedPage Today: ME/CFS is Gaining Attention

MedPage Today Focuses on Need for Recognition of ME/CFS and Research Funding MedPage Today, a news site for medical workers, published an article about ME/CFS that mentions the #MEAction campaign to increase federal research funding. The article gathered quotes from top ME/CFS researchers Leonard Jason and Lucinda Bateman, and it summarized

UK CMRC Welcomes New Sponsors and Prepares for Research Conference

The UK CFS/ME Research Collaborative People with M.E. need better treatment and support. This can only be achieved through increasing the quality of research; by coordinating a stronger collaborative approach to stimulate more research through bringing in expertise from outside the field and supporting early stage career researchers; and by

Bestselling Author’s Latest Novel Features Girl with ME/CFS

Bestselling Author John Connolly’s Latest Novel Features Girl with ME/CFS "I know some people with ME, and tried hard to get it right." John Connolly If like me you are a fan of thrillers – especially ones with a more than the unusual twist – then you probably don’t need