Category: Science

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 least two weeks, revealing insights

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Equip yourself to fight disinformation!

Over the last many months, social media platforms like Twitter, Facebook, and YouTube have been flooded with disinformation about COVID-19. We wanted to make you aware of the problem, equip you with tools for how to recognize and respond to disinformation, and enlist your help keeping our community safe. According to numerous reports, much of this disinformation comes from organized

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NIH announces two new funding opportunities for ME

On April 13, NIH announced two new funding opportunities for ME/CFS research:  PAR-20-165, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R01 Clinical Trials Not Allowed) PAR-20-168, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed) What is an R01?  What is an R21? R01 and R21 are two common types of funding

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Enrolling studies: Internet-Based Participation

What: Researchers at Southern Connecticut State University are currently enrolling individuals in a study that will examine an intervention app for people living with ME/CFS. This app monitors daily perceived and expended energy and fatigue levels. Participants will be asked to complete an online survey about their health history, ME/CFS symptomology, as well as current

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Diagnostic Criteria: Researchers and Clinicians Survey Results

Last month, we presented information about the diagnostic criteria, exploring their similarities and differences. Click here to read that article. This week, we’re reporting on a survey we sent to ME-literate researchers and clinicians.  We contacted clinicians who treat or have treated people with myalgic encephalomyelitis (ME) as their main patient population, and researchers who study

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NIH: Dr. Koroshetz Declines to Take Urgent Action for ME. Read His Response and Take Action!

NINDS Institute director, Dr. Walter Koroshetz, has made it clear that neither he nor the National Institutes of Health (NIH) are ready to take the immediate actions needed to address the crisis of myalgic encephalomyelitis (ME).  In response to #MEAction’s recent letter calling on the NIH to ACTION now for ME, Dr. Koroshetz responded with bureaucratic excuses

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