NIH Director Francis Collins just published a blog post highlighting the plight of COVID-19 “long haulers” and the role of citizen-science efforts at the Body Politic COVID-19 Support Group in compiling the first detailed patient survey of long COVID and analyzing the results. #MEAction reported on the survey results in ...
What a Summer for Advocacy and Education! We know the summer isn’t over yet, but A LOT has been happening with ME advocacy and education in the United States and the United Kingdom, and we want to make sure you are up to date, in the loop, and ready for ...
Join us this Wednesday for a community meeting to debrief about last week's NIH Interagency ME/CFS Working Group meeting, and to discuss where we go from here. Join the call this Wednesday, Aug. 19th at 3pm ET / 12pm PT. The meeting was quite something. At the last minute, Jaime ...
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 ...
The NIH is doing little to expedite a coordinated, outcomes-focused plan for ME/CFS research, an enormous missed opportunity in the era of COVID-19. Editor’s note: This is part of a report series on what the NIH is (and isn’t) doing for ME/CFS and long COVID research. For our Report Summary ...
As more and more COVID-19 survivors report disabling, multi-system symptoms lasting months on end, the National Institutes of Health (NIH) is finally beginning to openly acknowledge the serious health risks ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) poses to the public. In the past couple of weeks, Dr. Anthony Fauci, Director of ...
This article was updated on July 27, 2020 to reflect Dr. Anthony Fauci's repeated statements on this topic. Dr. Anthony Fauci is repeatedly warning the public that Covid-19 patients are at risk of developing myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) after being infected with the virus. As of ...
The Associated Press published a syndicated article last week profiling a study being done by the NIH on ME/CFS. The article describes well the severity of ME, and the immense challenges our community faces, including lack of treatments, difficulty getting a diagnosis, skeptical doctors and a lack of knowledge about ...
It was a big holiday season for Dr. Walter Koroshetz who oversees ME/CFS research at the National Institutes of Health (NIH)! As part of our Cards for Koroshetz Campaign, people with ME, caretakers and allies sent Dr. Koroshetz 500 holiday cards with their stories of living with a neglected and ...
Claudia Carrera, 35, was halfway through her graduate program in musicology at New York University when her mild symptoms of myalgic encephalomyelitis (ME) became severe. She tried pushing through, but eventually had to return home to be cared for by her parents. Nowadays, she oscillates between accepting she may never ...
