Will NIH Wait 40 Years to Try to Solve Long Covid as It Has With ME/CFS?
Billions of dollars spent by NIH with no results and no accountability—who’s to blame? And why are Collaborative Research Centers for ME/CFS only now being created?
In November 2020, Congress allocated $1.5B to NIH to find out why some people with Covid-19 didn’t recover, and to develop treatments for those suffering with Long Covid. Two and one-half years later, there’s almost nothing to show for those billions of dollars, according to an April report in STAT, an award-winning health, science, and public health online journal. (1)
“The National Institutes of Health [NIH] hasn’t signed up a single patient to test any potential treatments—despite a clear mandate from Congress to study them,” Rachel Cohrs and Betsy Ladyzhets reported in STAT. “And the few trials it is planning have already drawn a firestorm of criticism, especially one intervention that experts and advocates say may actually make some patients’ Long Covid symptoms worse.” (1)
Despite disappearing the $1.5B Congress allocated for the Long Covid program, named RECOVER, NIH hasn’t requested more funding to study this syndrome that’s estimated to affect millions of Americans. According to a joint investigation by STAT and nonprofit organization MuckRock, NIH is refusing to use any of its own money to speed up research or change course.
In this investigation, STAT and MuckRock interviewed two dozen government officials, experts, patients, and advocates, as well as examining public documents plus internal NIH correspondence. Nevertheless, it’s hard to tell how this situation evolved, since “the NIH has obscured both who is in charge of the Long Covid efforts and how it spent the money,” according to Cohrs and Ladyzhets.
The Congressional mandate was simple: increase understanding of why some people develop Long Covid while others don’t, and test potential treatments. It’s obvious that no breakthroughs have been made in understanding Long Covid since the study started in February 2021 and, according to STAT, “as of April, RECOVER hasn’t signed up a single patient for any of those clinical trials. And the timeline has slipped over and over again.” (1)
Initially, in a letter to members of Congress prompted by STAT’s March
2022 reporting on the initiative’s slow start, the NIH told lawmakers that
the agency expected to launch clinical trials by that fall. But by August, the
estimated launch had slipped to “by the end of 2022.” Then, another delay
became public in December, when one of the NIH officials leading RECOVER
told advisers that clinical trials would begin by the first quarter of 2023. Now,
Duke University, which is overseeing the clinical trial infrastructure, told STAT
and MuckRock it expects the first patients to sign up for trials this summer
[2023]. (1)
As for following the money, “There is no single NIH official responsible for leading RECOVER, and the initiative has failed to share basic information that would typically be available for a government research project of this scale,” according to Cohrs and Ladyzhets. Instead of directly funding clinical trials, NIH has outsourced them to five research institutions—New York University, Mayo Clinic, Massachusetts General Hospital, Duke University and RTI International (an “independent nonprofit research institute dedicated to improving the human condition”)—and those organizations have funded the trials, not NIH, according to the STAT and MuckRock investigation. Therefore, public databases don’t show how the funding is being spent, and more than one inquiry about it has been rebuffed by government officials. (1)
“The NIH RECOVER study is pointless,” said Jenn Cole, a Long Covid patient in Brooklyn. She tried to enroll but found the process “inaccessible.” It’s “a waste of time and resources,” she told Cohrs and Ladyzhets. (1)
In one of the protocols, NIH planned to test how Long Covid patients respond to exercise. Cohrs and Ladyzhets included a discussion of how damaging exercise is to both ME/CFS and Long Covid patients—so why don’t NIH researchers know about this well-documented phenomenon? (1)
You can probably imagine how this story ends, and the entire report of STAT and MuckRack’s investigation is well worth reading.
Meanwhile, at approximately the same time the NIH-led Long Covid disaster-in-the-making became public, the National Institute of Neurologic Disorders and Stroke (NINDS) announced a “funding opportunity” from NIH titled “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs).” (2)
This “Notice of Funding Opportunity”—NOFO, since every government program needs an indecipherable acronym—explained that the "overarching goal of this initiative is to support a network of Centers that will work collaboratively to define the cause of and discover improved treatments for ME/CFS. A more immediate goal for each Center is to rapidly advance synergistic, interdisciplinary research programs while serving as local resources and national leaders in ME/CFS research.” (3)
The goals were described in more detail in the “Notice of Funding Opportunity Purpose” section:
A more immediate goal for each Center is to rapidly advance synergistic,
interdisciplinary research programs while serving as local resources and
national leaders in ME/CFS research. Successful CRC research programs
will facilitate research in ME/CFS through conducting of 1) collaborative
basic and/or clinical research on ME/CFS; 2) longitudinal studies of individuals
with ME/CFS within each ME/CFS CRC and across CRCs within the network;
3) access to information related to ME/CFS for basic and clinical researchers,
academic and practicing physicians, healthcare professionals, patients, and the
lay public. ... Funding decisions will focus on those applications most likely to
make highly impactful contributions to ME/CFS research, as well as on those
with the greatest potential to collaborate effectively across the ME/CFS CRC
program. (3)
The projected “earliest start date” of the ME/CFS CRC program is April 2024. (3)
If one dates the original outbreak of ME/CFS to the Incline Village outbreak in 1984 (which is disputed by some), it’s taken 40 years for the Department of Health and Human Services, through the NIH, NIAID, NINDS, and NCCIH (National Center for Complimentary and Integrative Health)—not to mention the Centers for Disease Control and Prevention—to award grants to those researchers “most likely to make highly impactful contributions to ME/CFS research.”
I guess 10 or 20 years of not having appropriate medical care is considered acceptable to these six government agencies.
And at 30 years—well, why start getting serious now?
But 40 years—40 years—of poverty, pain, disability, isolation, despair—that’s just one step too far.
Author’s Note: For readers interested in doing some online research, I suggest checking out both STAT, which presents “tough-minded coverage of the business of making medicines, health tech, science, and public health,” and MuckRock, a non-profit news site that “brings together journalists, researchers, activists, and regular citizens to request, analyze, and share government documents, making politics more transparent and democracies more informed.”
BIBLIOGRAPHY
1. Rachel Cohrs and Betsy Ladyzhets. “The NIH has Poured $1 Billion Into Long Covid Research—With Little to Show for It.” STAT, April 20, 2023. https://www.statnews.com/2023/04/20/long-covid-nih-billion/
2. Tweet from NINDS on “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs),” May 9, 2023.
3. Health and Human Services Overview. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs). (U54 Clinical Trial Optional).” https://grants.nih.gov/grants/guide/rfa-files/RFA-NS-24-022.html
ABOUT THE AUTHOR
Neenyah Ostrom was the first reporter in the United States to report weekly for a decade on ME/CFS. Her reporting on the Chronic Fatigue Syndrome epidemic from 1988-1997 is getting increased attention thanks to Robert F. Kennedy Jr. He discusses her work extensively in his 2022 best seller, The Real Anthony Fauci.Ostrom’s groundbreaking reporting on Chronic Fatigue Syndrome and AIDS appeared in the New York Native from 1988 to 1997.
Ostrom wrote the Foreword to the recently published THE REAL AIDS EPIDEMIC: How the Tragic HIV Mistake Threatens Us All by Rebecca Culshaw, Ph.D.
Ostrom is the author of four books about the Chronic Fatigue Syndrome epidemic: What Really Killed Gilda Radner? Frontline Reports On The Chronic Fatigue Syndrome Epidemic (1991; TNM Inc., New York, NY), 50 Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS(1992; TNM Inc. and St. Martin’s Press, New York, NY; published in Japanese by Shindan-to-Chiryo, 1993; and in French by Les Editions Logiques, 1994), and America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS (1993; TNM Inc., New York, NY); and America’s Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS, Updated 2nd Edition (2022, available as a Kindle ebook and paperback on Amazon.com). Her most recent book, Ampligen: The Battle for a Promising ME/CFS Drug(2022) is available as a Kindle ebook and paperback on Amazon.com
In 1995, Ostrom and New York Native were recognized as having reported one of the top 25 most-censored stories in the U.S. press by 1995’s Censored: The News That Didn’t Make The News And Why (The 1995 Project Censored Yearbook by Sonoma State University Professor Carl Jensen, introduction by Michael Crichton; published by Four Walls Eight Windows, New York, NY, 1995).
Ostrom is ghostwriter/editor of seven popular science books. Additionally, she was an editor of Total Breast Health: The Power Food Solution For Health And Wellness by Robin Keuneke, which was chosen as a Publishers Weekly “Best Book of 1998” in the category of Breast Health (Kensington Publishing Corp., April 1998).