Long COVID Moonshot - mischief afoot?
Deadline to comment is April 23, 2024
While I mostly focus on myalgic encephalomyelitis in my articles, I have been looking into a recent proposal as it may affect the ME community. I explain the proposal later in this article, but I want to begin by bringing the Substack article by ROBYNTHREDD to your attention. It covers the proposal in detail and raises a number of important concerns.
The article includes some of the concerns I have about trusting the current health agencies to spend money wisely. The article titled, Beware the Buttercups, includes the following important points:
“The door has been opened for a Director [to oversee the Long COVID Research Program] to be appointed that has
no real knowledge of Long COVID,
a minimizer,
a politician,
All of the above
The NIH has done it before, they're doing it now, and they'll do it again. The same person the NIH hired to bury ME/CFS and MS is well on his way to burying Long COVID for the NIH as we speak. If you remember, Brian Walitt has been working for NIH for ages, and was the researcher who concluded that ME/CFS was a somatoform disorder with "often a degree of attention-seeking." He’s been hired in the past to conduct intramural studies for ME/CFS, Gulf War Illness, and now, SARS-CoV-2. It’s only a matter of time before he concludes that Long COVID is an “effort-preference” disease - meaning it is something patients “do” rather than something patients “have/happens to them.”
It’s also possible that a Director may be appointed who has experience with a different chronic illness (think SolveME).”
To learn about Brian Walitt’s involvement in the NIH’s “ME/CFS” intramural research see my article “NIH Intramural “ME/CFS” study finally published”
Beware the Buttercups is a long article that covers the proposal in depth.
Infection-Associated Chronic Conditions
To understand the approach HHS seems to be taking to lump multiple groups together, it is helpful to learn the new term Infection-Associated Chronic Conditions (IACC). Health and Human Services (HHS) has the following webpage: Infection-Associated Chronic Illnesses: Data-Driven solutions for diagnosis, treatment, and care.
It states:
“This category includes illnesses such as myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS), Long COVID, persistent Lyme disease, and multiple sclerosis occurring with Epstein-Barr virus (EBV).”
I noticed this says “myalgic encephalomyelitis AND chronic fatigue syndrome (ME/CFS)” as if they are two separate things. I explain how ME/CFS has multiple meanings HERE.
There seem to be two terms in use: Infection-Associated Chronic Conditions and Infection-Associated Chronic Illnesses.
Long COVID as a distinct disease?
Long COVID, as currently defined, is a mix of various patient groups which (in my opinion) should not be lumped together for research. Those with organ damage or post ICU syndrome or even post viral fatigue syndrome that is self-limiting and allows for exercise needs to be separated from those who are severely affected and have the symptom of post exertion exacerbation of symptoms.
Just like ME/CFS patients need to be stratified, as I discuss HERE, the Long COVID patients need to know which group they belong to and to be studied accordingly.
The Beware the Buttercups article states:
“We saw at the H.E.L.P. [health, education, labor and pensions] hearing that the most severe Long COVID patients were left out of the conversation and their voices were replaced with Infection-Associated Chronic Condition and ME/CFS orgs. In the same way that pwME do not want to be spoken for and misrepresented, pwLC want the same respect.”
I agree. I have long advocated for ME to be recognized as a distinct disease and I think the best approach to get there is to use the International Consensus Criteria (ICC). I would want the same respect for all the subsets of “Long COVID” patients.
There is science showing ME (as per the ICC) and Long COVID (with symptom exacerbation caused by exertion) are two separate patient groups with some overlapping downstream symptoms. I list some of those research studies HERE.
While I would love to find out that treatments for those in this Long COVID group will be effective for people with ME, I don’t want to waste years only to find out the treatments like those being considered to effectively remove persistent COVID virus do nothing for people with ME.
Optimally studying similar groups side by side is needed. Stratifying each patient group is the fastest way for us all to get answers.
Proposal
The U.S. Senate H.E.L.P. committee handles putting forth proposals for the funding of health, education, labor and pensions. This year they are working on a proposal to fund the Long COVID crisis.
In January 2024, they held a full committee hearing entitled: “Addressing Long COVID: Advancing Research and Improving Patient Care”. Information about that can be found HERE.
It seems the outcome of the hearing was for Chairman Bernie Sanders to propose a Long COVID Moonshot. His office released a press release that includes the following:
“WASHINGTON, April 9 – 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.”
The letter to “Long-COVID Stakeholders” can be found HERE.
Included in that letter is the following:
“This 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.
• Create a centralized coordinating entity for the majority of Long COVID research activities at NIH, with a clear leadership structure that includes patients who have lived experience with Long COVID.
• Require NIH to establish a new grant process for clinical trials related to Long COVID. These grants would be reviewed more quickly than traditional grants and prioritize funding for studies that test non-behavioral therapeutic and preventative interventions in patients with Long COVID, including but not limited to repurposing existing pharmaceutical interventions.
• Establish an NIH research advisory board made up of scientists, health care providers, and patients who have lived experience with Long COVID and other COVID-induced chronic conditions. The goal of the research advisory board would be to provide advice on research funding.
• Require NIH to establish a Long COVID database for the storage and dissemination of de-identified patient data to make Long COVID research more accessible.
• Require federal entities to provide continued education and support to patients, providers, and the public about the ongoing risks of Long COVID, as well as how to identify and address it.
Please submit your comments to the Committee by email at LongCOVIDComments@help.senate.gov
no later than the close of business on Tuesday, April 23, 2024.”
The Sick Times also wrote about the moonshot HERE. It pointed out how challenging it is to get legislation passed and that this isn’t the first Long COVID legislation. From the article:
“Sen. Sanders’ proposed act isn’t the first piece of legislation on Long Covid. Sen. Tim Kaine’s CARE for Long Covid Act was introduced in March 2023, but still has not passed through the HELP Committee. Rep. Ayana Pressley’s TREAT Long Covid Act, introduced in April 2022, has been similarly stalled.”
Comment
I am still considering whether I will submit a comment. If I do, I would include the importance of oversight on how funding is spent since the NIH and CDC don’t have a good track record. Oversight NEEDS to include patient advocates who are representative of the patients and who are not beholden to any org who is financially motivated to compromise the needs of the patients.
I would also recommend that all patients need to be THOROUGHLY SCREENED using the best technology to rule out other conditions and to stratify into groups. Money spent on thorough screening is a good approach to make sure research money is spent wisely.
I agree with this quote from “Beware the Buttercups”:
“Infection-Associated Chronic Conditions isn’t an umbrella, it’s a RUG, and we’re all being swept under it.”
We all deserve best care
My advocacy for ME has always been about leaving no one behind. When doctors are able to differentiate between each of these patient groups, we are ALL more likely to get proper care.
If “Infection-Associated Chronic Illnesses” is the broad label (like cancer), then each of the patient groups under that umbrella is like an individual cancer. We MUST push for differentiating patient groups, just as those with breast cancer should not be studied as if they are in the same category as lung cancer.
Colleen
Information provided here or in comments is not to be considered medical advice
Your view is very interesting Colleen as so many pwME are calling for ME to be part of this moonshot. But I think your view makes absolute sense in terms of understanding different categories of the covid disease.
You raise several excellent points, Colleen. Thank you for this.