A letter from our Community Advisory Committee

Francis S. Collins, M.D., Ph.D.

Director, National Institutes of Health (NIH)

9000 Rockville Pike

Bethesda, Maryland 20892

Dear Dr. Collins,

We are a Community Advisory Committee established with the support of the NIH to advise the ME/CFS Collaborative Research Center consortium. We are housed at the Center for Solutions for ME/CFS at Columbia University. Our committee includes people living with ME/CFS, caregivers, advocates, and representatives from Solve ME/CFS Initiative, Bateman Horne Center, and #MEAction.  

We applaud the NIH’s commitment to research into Post-acute sequelae of SARS-CoV-2 infection (PASC) known as Long COVID. We also wholeheartedly support the letter sent to you by the Long COVID Alliance and join them in all their recommendations.

We believe it would be a lost opportunity to embrace the struggle of people with PASC without also embracing those with Post Viral Fatigue Syndromes and ME/CFS. It is well known that up to 80% of people who have ME/CFS develop the disease following acute infections such as SARS, Ebola and common viruses like EBV, human herpesvirus-6, enteroviruses and others – and even after parasitic and bacterial infections.

Dr. Anthony Fauci, NIAID Director, Dr. Walter Koroshetz, NINDS Director, Dr. Nina Schor, NINDS Deputy Director, and other researchers have recognized that a significant percentage of people with PASC have symptoms “strikingly similar” to ME/CFS. These include post-exertional malaise, cognitive dysfunction, pain and sleep disorders as well as POTS. Individuals with Long COVID are being diagnosed with ME/CFS. Specialist clinician researchers Dr. Anthony Komaroff and Dr. Lucinda Bateman expect the number of people with ME/CFS to at least double due to COVID-19 infections. 

Millions around the world have had their lives destroyed and held hostage by ME/CFS, while being maligned and disenfranchised in the medical and disability systems – as well as dismissed with respect to disease burden in biomedical research. They flounder in a desert of indifference, inappropriate treatment and mis-management with up to 91% undiagnosed

In 2017, you wrote that “The NIH is committed to stimulating additional research to reveal the causes of this debilitating disease. ME/CFS is such a complex condition, affecting so many body systems, that we do not know where the answers will come from.” 

There could not be a more compelling opportune moment to stimulate and expedite research into post viral illnesses. Now is the time to push post viral syndrome research alongside this tsunami of PASC illness and disability that is fast becoming a public health crisis. We should build upon the knowledge and understanding from ME/CFS research to advance research in both areas, including utilizing the knowledge of possible harms. 

Therefore, we ask that PASC research prioritize comparator control groups such as people with ME/CFS and other related post-viral illnesses and include ME/CFS researchers and clinicians in strategic planning. This will help to accelerate research and understanding of all post viral illnesses. 

We also strongly request that you, as NIH Director, be inclusive and talk about all post viral fatigue syndromes including ME/CFS and PASC together in future communications and media. In addition, please revise your 2021 blog on Long COVID to be consistent with Dr. Schor and Dr. Koroshetz’s recent public statements articulating the relationship between PASC, PVFS and ME/CFS.

This is an unprecedented time and you are in a unique position to provide leadership in unravelling PASC and associated illnesses. Millions need your support and your voice. Thank you.

Sincerely, 

The Community Advisory Committee for the NIH Collaborative Research Centers

CC:

Anthony S. Fauci, M.D., Director of National Institute of Allergy and Infectious Diseases (NIAID)

Walter J. Koroshetz, M.D., Director of National Institute of Neurological Disorders and Stroke (NINDS)

Nina Schor, M.D., Ph.D., Deputy Director, NINDS

Steven M. Holland, M.D., Director, Division of Intramural Research NIAID

Avindra Nath, M.D., Clinical Director, Division of Intramural Research NINDS

Matthew J. Fenton, Ph.D. Director, Division of Extramural Activities NIAID

Vicky Whittemore, Ph.D. Program Director NINDS

Joseph J. Breen, Ph.D., Section Chief NIAID

Amy Patterson, M.D., Deputy Director for Clinical Research and Strategic Initiatives, NHLBI 


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