NIH Archives

#MEAction and Long COVID Justice Issue Press Statement about NIH Failure of Long COVID

August 23, 2023 No Comments

#MEAction and Long COVID Justice issued a press statement yesterday about our communities’ deep concerns regarding the rollout of RECOVER’s clinical trials for Long COVID. As studies show half of the Long COVID community meets the diagnostic criteria for ME/CFS – and our core symptoms overlap – RECOVER’s research has major implications for our community.

Why We Keep Telling the Story of ME to the Press

June 6, 2023 No Comments

Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the

NIH announces two new funding opportunities for ME

April 16, 2020 1 Comment

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

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

January 16, 2020 No Comments

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

NIH Receives Surprise Holiday Gift from ME Community

January 10, 2020 No Comments

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

Why Claudia Carrera is Fighting for ME Research

December 18, 2019 No Comments

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

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

December 9, 2019 5 Comments

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

Read #MEAction’s Request for Information response to the NIH

May 21, 2019 No Comments

The story so far NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request for Information, from the ME community on how to advance research for myalgic encephalomyelitis. With only a few weeks’ turn-around, the #MEAction NIH working group produced a compelling response based on information conveyed in

Celebrating Our Wins for ME!

April 11, 2019 No Comments

It has been been an exciting time for the myalgic encephalomyelitis (ME) community these past few weeks. We are in awe of the sacrifices and hard work people with ME and their allies have made to make their voices heard. #MEAction and the Solve ME/CFS Initiative organized the largest Advocacy Day ever with more than 200

Get involved: support science and advocacy this April

February 25, 2019 No Comments

April is going to be an incredibly exciting month for advocacy and for research into ME! The NIH is hosting a conference on ME in early April along with a Young Investigators Workshop specifically geared towards early-career investigators with interest in ME. Concurrently, there will be a Congressional lobbying push hosted by #MEAction and SMCI

Tag: NIH