COVID-19 and Long haul COVID Resources

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Category Archives: Research

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 ...
health technician with blood tubes in the clinical lab

Report Part 1: NIH is not advancing ME/CFS research

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 ...
Birds-eye view of crowd encircling around empty space where NIH logo is

Report Summary: What NIH is (and isn’t) doing for ME/CFS & long COVID research

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 ...
A woman at a kitchen counter writes in front of a laptop. A man stands behind her leaning against the refrigerator. Used as family planning image.

Survey on pregnancy in ME

Who – You have been asked to participate in this project if you are an individual aged 18-50 who has CFS and/or ME, is able to become pregnant, and you are either: - Thinking of starting a family in the next five years; - are currently in the process of ...

Announcing a special journal issue dedicated to ME

People with myalgic encephalomyelitis (M.E.) don’t hear good news on the research front as often as they should. That’s why we are thrilled to announce the scientific journal WORK: a Journal of Prevention, Assessment & Rehabilitation has devoted an issue solely to M.E. research. Topics will include documenting disability by ...
DNA strands surround stamp that says Funded

£3.2million granted for largest ME/CFS DNA study ever

Funding for the world’s largest genetic study into myalgic encephalomyelitis (ME), led by a partnership of patients and scientists, has been announced. Thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that ...
UK ME/CFS Biobank CureME logo

The UK ME/CFS Biobank: a rich resource of samples and data

It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I write, our office has been closed for over two months and clinical visits have been paused indefinitely; samples cannot currently be distributed. COVID-19 has created many challenges to our work and ...

Washington Post Editorial Says Some COVID-19 Patients Will Develop ME

The Washington Post published an editorial last Saturday about how researchers are warning that COVID-19 may lead to long-term, debilitating illnesses, like myalgic encephalomyelitis (ME), in some patients. The editorial was written by former Washington Post reporter, Brian Vastag, and #MEAction co-founder, Beth Mazur, both of whom have ME. Many ...

Citizen science highlights non-recovery in COVID-19 patients

Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team. The Body Politic COVID-19 Support Group surveyed over 600 participants who had experienced/were experiencing COVID-19 symptoms for at ...

Researchers Expect COVID-19 will Cause Surge of Chronic Illness, including ME

Since a new coronavirus emerged from Wuhan, China late in 2019, some 3.8 million cases and 265,000 deaths have been reported world-wide. Governments are focused on treating patients acutely sick with COVID-19, the disease caused by the new virus SARS-CoV-2, and slowing the spread of the virus. However, a second ...