As so much of the future of chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), and related diseases depends on the success of the long-COVID research effort, the first part of the look-ahead for 2022 focuses on long-COVID research. It should be noted that this blog probably understates the amount of ongoing long-COVID research significantly.
Has the Anticipated Boom in Long-COVID Research begun?
Despite the fact that long COVID has only been “a thing” for a year and a half, it’s garnered substantial research. A PubMed search of “chronic fatigue syndrome”, “fibromyalgia”, and “long COVID” from Nov. 2021 to Jan. 23rd, 2022 uncovered 36 ME/CFS papers, 88 fibromyalgia papers, and over 205 long-COVID papers.
It’s clear that except for the NIH – which on its own appears to have funded very few long-COVID studies – the research world has leapt at the chance of studying a new condition. With the U.S. Congress appropriating so much money for long-COVID research, many young researchers, in particular, are undoubtedly asking themselves whether the study of post-infectious diseases presents a good career path.
Of course, it’s not all about ME/CFS – several studies have already looked at the possible intersection between multiple sclerosis and long COVID – and autoimmune, inflammatory, cardiovascular, and nervous system diseases are clearly a possibility.
The really good news for people with ME/CFS and related post-infectious disorders is that studies of long-COVID prevalence seem to indicate that the condition is often serious and long-lasting. That’s of course, no surprise to many, many people with ME/CFS.
We should expect and hope the lopsided ratio of long COVID to ME/CFS and fibromyalgia papers (6:1; 2.5:1) will grow and grow over time.
It’s notable that we haven’t even begun to see the effects of the almost $500 million the NIH has poured into long COVID in the paper statistics. Plus, the rapid spread of the Omicron variant, which Anthony Fauci has said may ultimately infect just about everyone, could make the tsunami of long-COVID cases predicted last summer look like a piddling beachcomber.
Long-COVID Studies Underway
If all the below studies pan out, long COVID may become one of the most intensely studied conditions of all time. Consider that the studies listed below had begun over a year ago, and do not include the tens of thousands of long-COVID patients the NIH is following, the studies that started after that date, or studies that were simply missed.
- Nancy Klimas will be following 2,200 COVID-19 patients over time in a $4 million study.
- Avindra Nath is following 1,200 COVID-19 patients over time.
- Leonard Jason is tracking several hundred COVID-19 college students over time.
- A 900-person study assessing COVID-19 outcomes is slated to last through 2027.
- A 150-person observational COVID-19 Norwegian study runs through 2023.
- A 250-person Columbia study tracks COVID-19 patients over one year.
- A 250-person Johns Hopkins study will compare inflammatory/immunological, physical, pulmonary, and neuropsychological status in severely ill patients vs patients who simply received oxygen during hospitalization over 12 months.
- A 400-person French study will study sleep, exercise capacity, and respiration in COVID-19 patients for five years.
- A huge (4,000-person) European study will follow anyone with respiratory issues (such as cough, sore throat, etc.) after an infectious illness for two years.
- A 350-person New York University study will assess COVID-19 outcomes over several years in its survivorship database of coronavirus patients.
- A year-long Australian study at St. Vincent’s Hospital in Sydney is following 100 COVID-19 patients.
The Collaborative Cohort of Cohorts for COVID-19 Research (C4R) contains over 100 researchers and will reportedly follow 50,000 patients over time. This study is noteworthy not just for its scope but because it includes within it 14 already established and ongoing cohort studies. Rather remarkably, this effort appears to be largely separate from the congressionally funded long-COVID NIH project.
The Congressionally Funded NIH Project
The size, organization, funding, and scope of the Congressionally funded NIH $1.15 billion Recover long-COVID project dwarfs the other studies.
Given Congress’s unexpected largesse, money should not be an object. The NIH has the money to study any part of the body in as much depth as it wished to, and in large cohorts to boot. If major breakthroughs in long COVID aren’t made fairly quickly, it’ll either be because the disease is impenetrable or because the NIH didn’t hire the right blend of brains, expertise, and creativity.
The NIH, for its part, has a lot at stake. In some ways, long COVID is a piece of cake. Not only is the trigger known but we know exactly when it occurred – two factors missing for most chronic diseases. The fact that researchers will be studying a clean set of otherwise healthy patients (no need to account for age, diet, comorbid illnesses, or other complicating factors) simplifies things greatly.
Plus, after two years of this virus, we also know a ton about how it works. The NIH, to its credit, is including patients who’ve been taking part in other very long-term studies in its long-COVID cohorts. That means it will already have a great deal of biological information on some long-COVID patients – giving it a considerable head start on figuring out what went wrong and to whom.
Plus, the enormous amount of money Congress gave the NIH means the NIH can devise exactly the kind of studies it wants. It can use the latest technologies, create the best data repositories, enroll the largest cohorts, build the biggest sample depositories. All the problems that have beset long-COVID’s sister diseases like ME/CFS and fibromyalgia (small study sizes, little researcher interest) were swept away once Congress gave the NIH oodles of money.
All that remains is to put the pieces together. Linking the coronavirus’s known impacts to its long-term effects should, one would think, be relatively easy so far as medical problems go. Compare trying to understand that to trying to understand Alzheimer’s disease – a neurodegenerative disease that usually occurs as a result of a process, aging, which potentially affects every system in the body. Compared to Alzheimer’s, understanding long COVID is a walk in the park.
Of course, the post-infectious field does suffer from the fact that it really hasn’t been a field. The choice of interest for just a handful of researchers (one of whom, thankfully, is Avindra Nath), the field has got pretty shaky legs to stand on. We don’t know much about how diseases like long COVID, long-EBV, long-Lyme disease, long-Giardia, long-Ebola, long SARS-CoV-1 occur.
On the bright side, the small body of knowledge about post-infectious diseases means there are no misguided paradigms to get in the way. Much of the NIH’s initial long-COVID research will, ironically – given its historical antipathy to exploratory studies – be exploratory – and that’s a good thing. (How do you stop a field from getting off the ground? Require a hypothesis before enough data has been generated to provide one.)
The NIH Research Centers
The NIH appears to have put the task of deciding who to fund or not to fund in the hands of the New York University Langone group. As of Sept. almost $500 million had been awarded to over 100 researchers and 200 research sites.
We don’t know who most of those researchers are, but we do know the 17 institutions involved. In general, most appear to be studying about 900 patients over 4 years at a cost of $15-20 million. Since these big grants will pull in many investigators from across these universities, it’s possible that some ME/CFS researchers, such as Ron Davis at Stanford and Jarred Younger at UAB, may get pulled into the grants. (Ron Davis has not yet been contacted.)
Since all we have are press releases from some of them, we just know some broad research topics. On the bright side at least two are focusing on the mitochondria. On the other hand, none mentioned dysautonomia or exercise physiology. It was disappointing, in that regard, not to see Vanderbilt, with its strong dysautonomia department, in the funded group.
Since the NIH is putting so many eggs – almost half of its long COVID funding – into their big study basket – the makeup of the research groups and the focus they take will be critical. We’ll pretty quickly find out how many have done their homework by determining how many are employing exercise stressors – a critical tool in the ME/CFS studies – to get at abnormalities that remain hidden at baseline. Below are the universities which put out press releases regarding their long-COVID funding. (See all the University Centers here.)
- Stanford University – $15 million to study 900 COVID-10 survivors over 4 years led by infectious disease specialists.
- The University of Alabama at Birmingham (UAB) is receiving about the same amount of money to do that same thing.
- The University of Health Science at San Antonio will use brain MRIs, spinal taps, and focus on metabolic issues (including the mitochondria) in its workups of about 900 COVID-19 patients.
- Icahn School of Medicine at Mt Sinai – will focus on what happened to people with severe COVID-19.
- Emory University will bring together immunologists, virologists, pharmacologists, socio-behavioral scientists, epidemiologists, data scientists, and clinical and translational researchers to follow 1000 COVID-19 patients over 4 years.
- The University of Arizona at Tucson will gather together specialists in infectious disease, immunity, inflammation, sleep, mental health, gastroenterology, pulmonary and critical care medicine, neurology, cardiovascular diseases, and virology to peer into its cohort.
- The University of Utah will focus on COVID-19’s effect on pregnant women and the health of their children.
While we don’t know what the studies will consist of, we know that the NIH spent an enormous amount of money ($120 million) finding ways to organize, coordinate, and provide access to the immense amounts of data and the samples that will be collected and concentrated in various data repositories. We also know that specialized mobile apps are being developed to track these patients, and that many tissue samples will be collected and analyzed. Some institutions will also focus on pediatric patients.
The NIH, outside of its Congressionally mandated efforts, has made a few small efforts to boost long-COVID funding.
NIH Long-COVID Treatment Study Effort Fails
The NIH acted out of character when in August of 2020 it asked for treatment trials before knowing anything really about long COVID. (The NIH has repeatedly denied funding for treatment trials in ME/CFS because it says it doesn’t know enough about the disease.)
The “Urgent Request for Applications (RFA) to Repurpose Existing Drugs to Treat Long COVID” was open for six months but apparently funded only two studies. The NIH, has not, to my knowledge made any more calls for long-COVID treatment trials.
The Dec. 7th administrative supplement for long COVID will allow those ME/CFS/FM researchers with ongoing NIH studies in applicable fields such as post-infectious diseases (i.e. ME/CFS, POTS, FM) to include long-COVID patients.
We’ll find out over time how many of these efforts succeed but this likely quite incomplete summary indicates that a simply staggering amount of resources have been earmarked for long-COVID research. With the NIH long-COVID research effort in its infancy we’re likely only at the beginning of the beginning of our understanding of long COVID and its connections to ME/CFS, FM, POTS, Lyme Disease, and allied diseases. This should be an exciting year indeed.
- Coming Up: 2022 ME/CFS and FM research efforts and ME/CFS, FM, and long-COVID Clinical Trials