Category: United States

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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Celebrating Postcards to Doctors: Final Report

This article references the 2019 Postcards to Doctors initiative. Find the page for Postcards to Doctors 2020 here. We’re incredibly pleased to announce that we not only met but exceeded our initial goal of sending 6,000 postcards out into the world!  And we could not have done it without you.  As always, I am bowled over

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NIH Neglect is a Key Reason for the ME/CFS Crisis

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 the disease. While the AP

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NIH Receives Surprise Holiday Gift from ME Community

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 shunned disease. They told Dr. Koroshetz

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Cards for Koroshetz: Send a Holiday Card to NIH Demanding Action!

This holiday season, the #MEAction community plans to flood the mailbox of the U.S. National Institutes of Health (NIH) with holiday cards calling for NIH NINDS Director, Dr. Walter Koroshetz, to take immediate ACTIONS to end the crisis of myalgic encephalomyelitis (ME). We need your help! Take action with us: Send Dr Koroshetz a holiday

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WHY WE CARE: Directly Supporting People with ME

Erica Verrillo is founder of The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES), which provides direct assistance (rent, clothing, food, etc.) to people with ME who are in crisis in the U.S., as well as resources to the ME community. A generous donor has offered a matching donation of five thousand dollars to

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Host a Postcards to Doctors party this holiday season!

Host a Postcards to Doctors party this holiday season! And announcing: #MEAction’s first Pinterest boards! Together, the #MEAction community has made the Postcards to Doctors initiative an incredible success: there have been approximately 5,500 requests for postcards to doctors across 43 states! We are so thankful to see people across the country step up to

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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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