Category: NIH

National Institutes of Health (NIH) logo on side of building

#MEAction sends letter to NIH ahead of ME/CFS meeting

Last week the U.S. National Institutes of Health (NIH) announced it will hold its next ME/CFS Telebriefing on Thursday, Nov. 5 at 11am Eastern Time.  #MEAction staff and volunteers worked quickly to draft a letter with detailed questions for NIH in advance of this meeting. You can read the full letter here. We will keep

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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 see here. For Report Part 2: NIH

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Read our Report on NIH

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 the National Institute of Allergy and

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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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Why Claudia Carrera is Fighting for ME Research

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 accomplish her life goals––finish her

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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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