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What a heartening story Wes Ely MD, MPH is. He’s precisely the kind of researcher we want studying long COVID (and ultimately, ME/CFS. Given how much he’s talked about ME/CFS, I would be shocked if he didn’t go after ME/CFS at some point).
Ely is not your average researcher. He’s co-authored hundreds of studies, co-leads the “The Critical Illness, Brain Dysfunction, and Survivorship (CIBS) Center” at Vanderbilt University, and has continuously been on the receiving end of large federal research grants (NIH/VA) for 20 years.
Deeply embedded in the medical research infrastructure for decades, Ely is the kind of guy we’ve wanted in ME/CFS for decades. He regularly puts on large and expensive studies and clinical trials and is currently working off of $38 million in federal funding, which he told Gez Medinger he expects to soar to $60 million with new long-COVID funding.
As a bonus, Ely has been studying post-intensive care unit syndrome (PICS) – a condition that Dominic has shown looks much like ME/CFS and long COVID.
- What a heartening story Wes Ely MD, MPH is! A former ME/CFS skeptic, he’s co-authored hundreds of studies, co-leads the “The Critical Illness, Brain Dysfunction, and Survivorship (CIBS) Center” at Vanderbilt University, and has continuously been on the receiving end of large federal research grants (NIH/VA) for 20 years.
- Right now he’s working off of $38 million in federal grant money. In other words, this guy is “in”, he’s well-respected, and now he’s all over long COVID and frequently refers to ME/CFS. Plus, he’s a darn good writer and speaker. He’s just the kind of guy we want on our side.
- When his brain center started receiving long-COVID patients with massive cognitive problems, he saw the light and recognized that it and ME/CFS were real and serious diseases. He now rues the days when he dismissed ME/CFS as a psychological disorder.
- His work at his Center has found that long-COVID patients “demonstrate profound memory deficits and executive dysfunction — problems finishing daily chores and task lists, meeting schedules, controlling emotions, analyzing data, and processing information. In other words, they have a hard time living life.”
- Ely has snagged an NIH grant to run a large (500-person) study of an immunomodulatory drug called baricitinib used in rheumatoid arthritis. The drug ended up being the first immunomodulator approved to treat COVID-19, but this is the first time that a drug of this type is being trialed in long COVID.
- These are the kinds of studies that big diseases get as a matter of course but are virtually unheard of in the ME/CFS world. They are the types of studies that quickly get a drug out in the patient population.
- The fact that the NIH – outside of the RECOVER Initiative – is funding what is undoubtedly a very expensive clinical trial in long COVID is very good news indeed.
- The fact that the drug comes from a disease not usually associated with long COVID or ME/CFS underscores the fact that not only do we have no idea where an effective drug will come from but that many, many possibilities exist in the repurposed (already in use) drugs.
- Ely is also assessing whether neurocognitive exercises can improve cognition in long COVID. He ends up asking long-COVID and ME/CFS patients not to give up hope and that he is in this for the long run.
- Check out several video interviews with Ely in the blog.
Ely’s immersion in long COVID came out of his intensive care work. In his YouTube interview with Gez Medinger, he related how he’d get COVID-19 patients out of the ICU, get them over post-intensive-care unit syndrome (PICS), only to see them suddenly deteriorate months later. At the same time that was happening, he was getting emails from colleagues reporting the dramatic cognitive problems they were seeing in patients who’d never been in the hospital before. PICS, he concluded, this was not – and jumped with both feet into long COVID.
Ely has gone from a skeptic not just with long COVID but with ME/CFS, long Lyme and fibromyalgia. He readily admits he believed what he was taught in medical school – that these diseases are not real. (He reported some recent medical students are still being taught that long COVID is not real.) Indeed, in media articles, Ely has repeatedly pushed back against the “ivory tower” mentality of the medical profession which disregards diseases it doesn’t understand.
His work validating the cognitive problems found in long COVID (which match those found in ME/CFS) at Vanderbilt University’s Critical Illness, Brain Dysfunction, and Survivorship Center is invaluable given the center’s long track record assessing cognition in post-ICU syndrome.
Ely reported that his long COVID patients:
“demonstrate profound memory deficits and executive dysfunction — problems finishing daily chores and task lists, meeting schedules, controlling emotions, analyzing data, and processing information. In other words, they have a hard time living life.”
These symptoms are similar, he states, to those seen in “mild to moderate Alzheimer’s disease”, post-ICU syndrome, and myalgic encephalomyelitis/chronic fatigue syndrome.
Besides being a compassionate researcher, Ely is a vivid writer as well. In his Stat News piece, “The Haunting Brain Science of Long COVID“, he reported that the “bridges (white matter) linking different territories of the brain have been blown up and the land itself (nerves in the cerebral cortex and hippocampus) become scorched, leaving people with long Covid plagued by thinking and memory deficits.”
His Washington Post article, “How long COVID reshapes the brain — and how we might treat it“, reported that the microglia and astrocytes in the brain are “revved up in ways that continue for months – maybe years” in long COVID. He likened them to a “rock weighing down on the accelerator of a car, spinning its engine out of control”, causing injury to many cells.
Ely’s Big REVERSE-Long COVID Study
Ely’s REVERSE-Long COVID study may be as important for what it says about long COVID and the medical profession as the study itself. The “multi-site randomized, placebo-controlled, double-blind, parallel-design” baricitinib study – which was unfunded when Gez Medinger talked with Dr. Ely about it – is, by ME/CFS standards, gobsmackingly large. These are the kinds of studies that big diseases get as a matter of course but are virtually unheard of in the ME/CFS world. They are the types of studies that quickly get a drug out in the patient population.
The 5-year 500-person NIH-funded study should begin recruiting patients soon at five universities (Emory University, University of California, San Francisco, University of Minnesota, Vanderbilt University, Yale University) in the U.S. Neither the cost nor the funding Institutes at the NIH were reported, but the cost must be huge. (A 30-day supply of a 1 mg tablet is reportedly around $2,770 and this study will, for the most part, be using 4 mg/day.)
Ely’s interest in baricitinib (Olumiant) dates back to a June 2020 study that used artificial intelligence to tag the JAK1/JAK2 inhibitor as a possible COVID-19 drug. (JAK inhibitors have been used in cancer, inflammatory diseases, and various skin conditions.)
The AI study suggested that baricitinib’s antiviral and cytokine-inhibiting properties could be helpful, and the drug ended up being the first immunomodulator approved to treat COVID-19. This is the first time, though, that a drug of this type is being trialed in long COVID.
The fact that the drug is currently FDA-approved for use in rheumatoid arthritis and severe alopecia areata (bald spots) demonstrates: a) we have no idea where a drug for long COVID, ME/CFS might come from; and b) we have to keep an eye out for artificial intelligence-produced possibilities.
The study will assess cognition, exercise capacity (CPET), functional status, quality of life, post-exertional malaise, symptoms, inflammatory markers, and viral persistence.
Individuals meeting inclusion criteria will be randomized to one of two arms: the intervention arm of baricitinib 4 mg daily for 24 weeks (dose adjusted to 2 mg or 1 mg for baseline renal dysfunction) versus the placebo arm for 24 weeks.
When asked if he’s checked out the ME/CFS literature, Ely said he’s read “all of it”, and acknowledges that the major long-COVID hypotheses (pathogen persistence, immune activation, dysautonomia, endothelial damage) first came from the ME/CFS community. He states that the medical community has a lot to learn from ME/CFS and that he now has close friends in the ME/CFS community.
We’ll see what baricitinib and other drugs will do, but Ely has also written about the brain’s “immensely powerful ability to remodel itself” and heal. “1,000 trillion synapses” after all, “are constantly being modified every second of every day”. Time will tell whether energy-depleted long-COVID patients can harness this neuroplasticity, but his lab is currently assessing whether computerized cognitive rehabilitation programs can help.
I don’t think Ely or anyone expects these programs to return patients’ cognition to normal, but a 20 or 30% gain could make a big difference. This is the kind of study that could’ve/should’ve been done on the disease (ME/CFS) that coined the term “brain fog” years ago.
Ely’s message to the long-COVID and ME/CFS community is the same – do not give up hope – and know that he and others are in this for the long run.
This is all good news. A former ME/CFS skeptic leading a large research center at a major university embraces both long COVID and ME/CFS, advocates for them in media articles, gets a very large immunomodulator long-COVID study funded, pledges to stay the course for these diseases, and implores patients not to give up. Nice!
We have another good long COVID resource to add to our list Gez Medinger’s YouTube channel. There’s also the very active Polybio Research Foundation YouTube Channel, the TLC Sessions: the Long COVID Sessions podcast (thanks Gayle!), and Eric Topol’s Ground Truth substack often focuses on long COVID.
PolyBio’s Wes Ely Interview
- Coming up – we’re seeing some heavy-duty immune drugs being trialed in long COVID – something we’ve wanted to see trialed in ME/CFS for ages. Coming up – we check out the long COVID clinical trials that are underway.