By David Tuller, DrPH
On April 9th, Senator Bernie Sanders, the independent senator from Vermont who votes with the Democrats, unveiled an ambitious $10 billion “moonshot” proposal to fund research into Long Covid. The proposal has raised hopes among patients with the disease or cluster of diseases now being called ME/CFS—as well as concerns that those who came down with the illness before the coronavirus pandemic might be left out of the research program altogether.
The proposal is currently just that—a proposal. In a letter to stakeholders released the same day, Senator Sanders, chair of the chamber’s Health, Education, Labor and Pensions (HELP) Committee, specifically asked for input. According to the letter, the draft proposal would “provide $1 billion in mandatory funding per year for 10 years to the National Institutes of Health (NIH) to respond to the Long COVID crisis with the sense of urgency that it demands.”
ME/CFS advocates are urging members of the community to make their voices heard regarding the imperative to ensure that the funding is deployed to maximize its effectiveness for them as well as for Long Covid patients. This input is especially critical given the widespread anger and dismay over the way in which the NIH seems to have frittered away the $1.15 billion for Long Covid research allocated by Congress for its RECOVER initiative.
Here’s information from the press release about Senator Sanders’ proposal:
Sen. Bernie Sanders (I-Vt.), Chair of the Senate Health, Education, Labor, and Pensions (HELP) Committee, today released a draft legislative proposal to address the Long COVID crisis that is negatively impacting the health of some 22 million Americans.
Before formally introducing this legislation in the Senate, the HELP Committee wants to hear from the Long COVID community to get their views on how this proposal can be improved and strengthened to effectively deal with this public health emergency. The committee is particularly interested in hearing from Long COVID patients and their families, scientific researchers, and medical professionals.
The public input on the proposal will help inform the legislation that Chair Sanders introduces.
“In my view, the time is long overdue for Congress to treat Long COVID as the public health emergency that it is,” said Sanders. “Congress must act now to ensure a treatment is found for this terrible disease that affects millions of Americans and their families. Far too many patients with Long COVID have struggled to get their symptoms taken seriously. Far too many medical professionals have either dismissed or misdiagnosed their health problems. That has got to change. We cannot turn our backs on the millions of Americans who continue to suffer from Long COVID. I look forward to hearing from patients, experts, and researchers about what we must do to address this crisis.”
In January, the HELP Committee held a hearing on Long COVID that featured testimony from patients and the country’s leading Long COVID researchers to consider how the United States can advance treatments and improve the health of those living with the illness.
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Letter from physical therapist Todd Davenport
Multiple stakeholders have already submitted their thoughts. Below, I’ve included an.excellent example of this input from Todd Davenport, a professor of physical therapy at the University of the Pacific in Stockton, California, and an expert on the two-day CPET method of identifying and diagnosing ME/CFS patients:
Dear Senator Sanders,
Thank you very much for your interest in introducing legislation to provide additional funding, focus, and accountability to Long Covid research in the United States. Your advocacy and work are a sustaining source of hope and inspiration for so many.
As your recent Senate hearing pointed out, SARS-COV-2 is the basis for a new form of infection-associated chronic conditions (IACCs) affecting millions of Americans. However, IACCs are not a new phenomenon. People affected by a common subtype of Long Covid now join people with an existing condition called myalgic encephalomyelitis (ME) in suffering from severe signs and symptoms that cause life-altering, and often life-long, suffering and disability.
A recent survey by the U.S. National Center for Health Statistics counted 4.3 million Americans with ME, or 1.3% of the population. It is the most common, disabling, and costly condition that so few seem to know about. Yet, research into ME historically has not been funded at similar scale for the burden of disease it causes relative to any other disease covered by an NIH research funding program.
The underfunded line of research into ME has not yielded a definitive test or treatment. However, the resilient ME clinical and research communities, led by people with lived experience, still have managed to generate a knowledge base that forms the foundation for our current understanding of Long Covid.
Investment in research for ME and other IACCs not only will help us unlock the mysteries of Long Covid because of their overlap, but it will provide equity to people in need. A rising tide can lift all boats only if that tide is strong enough to reach them all.
As a clinician and researcher with 15 years of experience in trying to help people with ME and now people with Long Covid, I have seen firsthand the suffering, the severe effects on quality of life, and the few tools that reliably help to provide relief and improve quality of life. I urge you to include ME and other IACCs into the legislation you introduce for Long Covid funding.
Long Covid rightly has a spotlight in the popular consciousness, but we cannot relegate people with ME and other IACCs to its shadows. Please include research and education in ME and other IACCs into your legislation. If I can provide additional information to assist your ongoing efforts, please do not hesitate to contact me.
Sincerely,
Todd E. Davenport, PT, DPT, PhD, MPH
Board Certified Clinical Specialist in Orthopaedic Physical Therapy
Pronouns: he/him (why is this important?)
Professor & Vice Chair, Department of Physical Therapy
Faculty Chair, School of Health Sciences, 2023-2024
Chair, Faculty Compensation Committee, 2023-2024
Representative from the School of Health Sciences to Academic Council, 2023-2026
Much needed. Can governments really afford not to invest in such research?
Let’s hope it will be invested in high impact research and not picky little busy-work type research.
How do we keep this new effort from being hijacked/sabotaged by the special interests existentially terrified of a biomarker or other proof that ME, “CFS”, or now Long Covid is a real and physical disease? (Cui bono? suggests that a widely accepted biomarker for any of these would bankrupt any disability insurer, and leave every government payer of disability income in the world unable to pay its obligations.)
Obviously the way to sabotage such an effort is to allocate resources to big, long term studies rather than focusing on an immediate search for biomarkers and immediate trials of existing medications and (non exercise, non psych) therapies.
My letter, which was timely and designed for a US federal government insider to understand, but might just confuse:
https://medium.com/@FStevenChalmers/steves-written-input-to-help-committee-on-long-covid-moonshot-2a02f1970d2e
(Sorry Medium couldn’t reproduce the nested bullets. I’ve used parentheses to indicate indenting under the previous bullet.)
Steve Chalmers commented – “How do we keep this new effort from being hijacked/sabotaged by the special interests existentially terrified of a biomarker or other proof that ME, “CFS”, or now Long Covid is a real and physical disease?” – and added – “Obviously the way to sabotage such an effort is to allocate resources to big, long term studies rather than focusing on an immediate search for biomarkers and immediate trials of existing medications and (non exercise, non psych) therapies.”
I’d say that another way to sabotage the effort would be to opt for inclusion criteria that are so broad that there’s little prospect of disease mechanisms or biomarkers being found. When it comes to Long Covid, haven’t several distinct categories of patients already been found? If so, it would seem logical to research them separately.
Often, scientific problems get solved when we have some new kind of experimental instrument (Galileo looks at the moons of Jupiter through a telescope, etc.)
Possibly, we just don’t yet have the technology to understand what’s happening here. Something to do with how the immune system works, seems likely. Better understanding how the immune system works sounds like it could have huge benefits for many areas of medicine, not just Long COVID. But maybe we just don’t have the scientific understanding yet to solve this.
(I guess I had better acknowledge the Pandora’s Box concern that some researchers have about immune system research, that we might suddenly discover how to make new kinds of bio weapons that are much more dangerous than covid19 was. Along the lines of “yay, we can make a new kind of pathogen that has never ever ocurred in nature, and to which no one has any immunity)