11/1/24: "Cellist Joshua Roman and Long Covid -- Public Health Grand Rounds" with Dr. Atul Gawande, Assistant Administrator for Global Health at USAID (United States Agency for International Development) "where he oversees a bureau that manages over $4 billion with a footprint of more than 900 staff committed to advancing the equitable delivery of Public Health' Atul Gawande: "..they try to exert physical activity, even mental activity, and that exertion seems to drain out their abilities to function and they crash..' JR: "I am of course interested in advocacy for Long COVID and I'll just say that I see this as a gateway to a sea-change in how we treat ourselves in the medical system generally because there are so many people impacted that we can't ignore it, first of all - and second of all, so much of it is the kind of unseen disease and condition that tends to get ignored that ME/CFS has struggled with - fibromyalgia have struggled with for decades..."
STAT News: 'What would Hippocrates think of these First Opinions?' (On recent LC piece) "Thank you for publishing this, and please consider publishing more articles like this that call out the medical community for turning their shoulder to these patients. There is enough literature out there to support treatment to improve quality of life even if we don’t have a “cure.” Neglecting to take the time to treat what symptoms we do understand in order to ease someone’s complaints feels like one is indeed breaking the Hippocratic Oath, and other health care professionals who need their medical counterparts to hold themselves to this standard are getting fed up with not having that support." — Francesca DeSimone-Farrow
3/9/23, Conversations on Health Care: “Long COVID: Skeptics Are Wrong, Researchers Say” "It's crucial to understand that there are people with Long COVID who are bedridden right now, who are not able to leave their homes…" Iwasaki: "What we're seeing, there are several key features that distinguished people with Long COVID such as elevated levels of exhausted T cells. These exhausted T cells are only found in people who are fighting chronic infections or cancer T cells that keep seeing the same antigen over and over, that's where we see these types of cells." We also see that there's evidence for elevated Epstein-Barr Virus reactivation in people with Long COVID. Another feature that's very uniformly different between Long COVID and control groups is the lower levels of Cortisol, Plasma Cortisol, we're seeing in Long COVID patients and because Cortisol is such an important hormone that regulates so many different aspects of our physiology, we can basically assign a lot of the symptoms that they're getting with this low levels of Cortisol." Margaret Flinter: "We hate to think you have to get out and do fundraising for something that is so desperately needed. I did note a few moments ago, you referenced Epstein-Barr Virus, and we have been reading about how Long COVID research might help us understand how better to treat multiple sclerosis or chronic fatigue syndrome, and we're very intrigued with that" Iwasaki: "COVID is just one of the many pathogens that can cause this mysterious post acute syndromes. Long COVID is the latest to join that list, but there are a handful of viruses and bacteria and parasites that can similarly they cause long term symptoms and many of these people develop these ME/CFS syndrome. We're hoping that by studying Long COVID and then we'll be recruiting people with ME/CFS into future studies with Dr. David Putrino’s group to be able to understand the parallel between these diseases, and whether one research can inform the other because the underlying pathogenesis may be shared, but that's something that we have to do more research on." Lowenstein: "..a hallmark symptom of Long COVID tends to be something we call post-exertional symptom exacerbation the worsening of symptoms following a period of physical, mental or emotional exertion." "Unfortunately, it's not something that's just going to go away, right. We'd like to compare COVID and the flu. ME/CFS may be related to Long COVID. There are a lot of people who have been disabled by the flu as well, right. There are other post viral illnesses. Long COVID is not the first of its kind. There are ways we can mitigate these sorts of problems in the future, and there are ways we can mitigate in the present, and I think talking about it openly is the first step to getting there." "ME/CFS which is the abbreviated term for Myalgic Encephalomyelitis, sometimes called Chronic Fatigue Syndrome. It's another often infection associated complex chronic illness that shares many similarities with Long COVID. In fact, a large percentage of people living with Long COVID have qualified for the diagnosis ME/CFS."
3/9/23, On Health: “On What We All Need to Know About Living with Long COVID” “..so many of these conditions where people are living at the edge of medical knowledge, and certainly COVID is like the shining example of that..” “And one of the hallmark symptoms of long COVID, which is also a common symptom for ME/CFS, is something called post-exertional malaise or post-exertional symptom exacerbation.” “And also the NIH's Long COVID research is not in any way building enough on ME/CFS research. They are not pulling in enough experts on ME/CFS. And a lot of advocates feel like they're kind of reinventing the wheel and that's just gonna slow all of this down a huge amount. They're considering looking into exercise on cognitive behavioral therapy as cures for long COVID. And the ME/CFS community is like, no, we already tried that, it didn't work, don't do it again.” “And for anyone listening with long COVID or ME/CFS, please know that there are so many people working on this problem right now. And I really do believe that things are gonna get better with time, even though I'm also very angry and frustrated.”
Iwasaki is saying the right things but do we actually have significant data on T cell exhaustion, cortisol and EBV reactivation?
5/22/23: AMA Update: Long COVID: New research, common symptoms, long-term effects and treatments with Akiko Iwasaki “we're finding four salient features..first is that people with long COVID had reduced circulating levels of cortisol…” “The second is that we detected recent reactivation of Epstein-Barr virus in people who have long COVID compared to those who recover. EBV may or may not be directly responsible for the symptoms, but this is a feature we're detecting. Third, we found that the immune cells are differentially activated. We see more activated B cells and T cells, and T cells in particular, that's to create type 2 cytokines that are elevated in the people with long COVID. And finally, we find that antibody levels to the SARS-CoV-2 viral antigens are elevated in people with long COVID. This may indicate a persistent antigen for which these people are developing more and more antibodies against.” “There needs to be more financial assistance to support these people with Long COVID. We also need social support. People with Long COVID often feel isolated and are suffering alone. There's a need for more support programs, social support programs and resources for people with Long COVID. And finally, I would say that we also need more public awareness. Many people are still not aware of Long COVID. And there is a need for education for physicians as well as patients, so that they can get the best treatment and best therapy possible & to support them"
4/29/21, AMA Update: “Long-haul COVID research with Dr. Mitch Miglis of Stanford” “..fatigue is very prominent. The cognitive impairment is extremely disabling for most patients. We don't understand why that is..” “It's probably not just related to blood flow to the brain. It's probably something else systemic, whether that's inflammation or not, we don't know.” “So, this is why we need the studies and thankfully the NIH has allocated funding and hopefully that'll be what we're doing in the next year.” “..think to carry that forward and to build that, ultimately we need funding. And I think this first step that the NIH has taken with trying to create some patient hubs and patient registries I think will encourage that. And not only can we care for patients in a multidisciplinary way, but we can collect this data in a harmonized way and try to kind of determine what works and what doesn't for trials and such going forward.” “Do you feel like you have the funding, at least initially, for what needs to happen kind of on an ongoing basis?" "We don't have the funding to carry this at the moment longitudinally. I mean, we just have a funding for a cross-sectional study of maybe 20 patients. But hopefully this next phase of funding that's at least being stimulated by the NIH will give us more opportunities. And looking at various other funding sources, we hope to kind of expand this and of course collaborate with other centers that are interested, very interested in anyone that wants to collaborate with us on this.”
10/27/20, Science: 'Every minute counts.' This immunologist rapidly reshaped her lab to tackle COVID-19' 'For Akiko Iwasaki, the pandemic has brought new research priorities—and new urgency' 'Now, she is turning her attention to long-haulers, people who suffer a bout with the virus and don't fully recover.' 'Iwasaki's latest passion is long-haulers who can't shake symptoms like fatigue and brain fog ' "We really want to get to the bottom of what's going on," she says impatiently. Until then—along with so many other researchers—she'll be in overdrive."
11/10/22, WBEZ (Chicago) Reset with Sasha-Ann Simons: “Long COVID Continue To Impact Americans” “What we do see frequently in the health centers is fatigue and brain fog. Those tend to be the predominant symptomatology that we'll see on a regular basis.” Putrino: “I tend to think that we should stop referring to Long COVID as a mystery because it's not a mystery anymore. It's a post-viral illness. And it's rapidly becoming one of the most researched post-viral illnesses on the planet. And so every day we're learning a little bit more and more about potential biomarkers, potential treatments, new symptoms and the mechanisms behind new symptoms.” Lowenstein: “I don't think that the federal government was prepared for the loud way in which we kind of bust through the doors in order to make ourselves known and heard.” “I would say educate yourself on access issues, educate yourself on invisible disabilities, and on infection-associated chronic illnesses because Long COVID is not the first post-viral illness of this type. There are millions of people who have been sidelined from society for decades for diseases like myalgic encephalomyelitis, chronic fatigue syndrome, Lyme, etc. I would also urge folks to get creative with caregiving.”
2/30/22, Long COVID Podcast: "Ziyad Al-Aly" Al-Aly: “Let’s not waste this crisis. Let's learn from it so we can not only help people with LC, but also understand the post-viral condition better so we can really offer people with ME & other post-viral illnesses treatment...” "And I think we ignored that for a long, long time. People in the ME/CFS community, they will tell you that, we've been suffering for 20 years, we've been suffering for 10 years, I've been suffering for 15 years. And the condition has been largely ignored. People diverted their attention to other things and they ignored this chronic fatigue syndrome. And to our peril now, had we invested in understanding it 20 years ago, we would be better prepared now to really meet the challenge of Long Covid." "But we didn't, we didn't, we missed all that opportunity. So hopefully we don't miss the boat again. Hopefully what we're going to do now is not miss the boat again or not drop the ball again And then try to seize the moment now and understand Long Covid. Not only to help people with Long Covid, but also as a silver lining as well of this pandemic, to be able to like once and for all try to understand the post-viral condition. And again, the idea that viruses lead to long-term consequences isn't really new.” “People chose to ignore it and chose to not do research on it and chose to sweep it under the rug. And as a result, now we're having to really literally discover the A and B and C of post-viral condition. We have to start from scratch, from the basics, because even the A and B and C of the post-viral condition have not been well understood.”
4/11/22, JOSPT Insights: “Less is more—the mindset shift clinicians need for long COVID, ME and other post-viral illness, with Dr Todd Davenport” “The etiological question is far from settled. We know from much of the literature in systems & cellular physiology that there is a disruption of the substrates involved with oxidative metabolism. So everyone who is getting a little anxious because I'm going to talk about the Krebs cycle and relax because I'm not going to do that, but that's basically the cycle that appears to be disrupted based on the metabolomics data that we have from myalgic encephalomyelitis and that sort of area of research.” “At the systems level, we know that there is a fluctuating capacity to use oxygen for metabolism, which makes sense because at the cellular level, if you're not able to use oxygen, then it should show up at the systems level as well. And our methodology with the Workwell Foundation, with whom I'm an unpaid scientific advisor, has shown that there is impairment in the volume of oxygen consumed, particularly at what we call the ventilatory anaerobic threshold, which is the point at which anaerobic metabolism tends to start to predominate. So people go into early anaerobic metabolism. They run out of the ability to use oxygen. A useful analogy is often the credit card analogy.”
8/10/24, Long COVID the Answers: Post-Exertional Malaise (PEM), Long COVID & its Management with Professor Todd Davenport “As a physical therapist & as an exercise scientist, one of the things that PEM is to me is a bio-energetic phenomenon." “So it's almost as though the virus has hijacked the cellular machinery of energy production and utilization. And so there's not enough left over for daily functioning. That's where my research and clinical interests have been over time.” “Once a person has post-exertional malaise, it strikes me that this is a different process that can't fully be explained by viral persistence. I think the literature backs me up on that.”
10/4/24, Active Mom Postpartum: 'Dr. Todd Davenport - Exploring Chronic Fatigue & Safe Exercise Post-COVID' “There are things that give me specific hope related to ME and ME related to Long Covid and so forth. First, that we're having this conversation” “I think the other thing that gives me hope is the data coming out from the pathophysiological side regarding some of the underpinnings of ME and ME like conditions. I think that will ultimately yield fruit in terms of curative treatments, much more than what we've played with in terms of cognitive behavioral therapy, trying to talk people out of feeling sick, which has not worked, trying to exercise them, which we know from our work and others, is not good for people. So trying to move towards pharmacological and non-pharmacological treatments that can actually influence what's happening in the body, that gives me hope.”
4/18/22, JOSPT Insights: Managing the condition that breaks all the rules - pacing & post-exertion symptom exacerbation w/Dr Todd Davenport “I'm encouraged by the research focus & dollars that have gone to understand the pathophysiology of long COVID..even as I'm aware of the idea that it may be displacing attention and resources away from other conditions that also share post-exertional symptom exacerbation and post-exertional malaise. And so there are some promising research hypotheses. It's unclear to me right now whether those research hypotheses are specific to long COVID, or they might generalize well to the other long conditions, long mono, long Lyme, long enterovirus and so forth. I'm just not sure yet, but it's a source of optimism that I have. We can be involved because again, going back to believing patients, finding credibility in symptoms, that's a really powerful basis to establish phenotypes.” “Post-exertional symptom exacerbation requires a less-is-more approach. We have conditioned ourselves and our payers and our advocates in government to a more-is-more approach. More-is-more has the potential to cause harm in this case.”
11/4/24, Bloomberg: 'Unraveling Covid’s Pernicious Role in Brain Fog and Clotting' 'Results are expected next year and could lead to more advanced clinical trials to test the immunotherapy’s potential to treat not only long Covid but also other serious diseases..'
Prism: 'Advocates say the Harris campaign must do more to address long COVID' 'For over four years, long COVID-19 patients and advocates have been frustrated by a lack of public acknowledgment of their condition and the ongoing long-term impact of COVID-19'
Paper on the immunotherapy (thread): Fibrin-targeting immunotherapy protects against neuroinflammation and neurodegeneration, 2018, Ryu et al
6/16/23, TLC Sessions - Living with Long Covid: Dr. Wes Ely (Vanderbilt) “it's very frustrating to hear & to listen to the people who have long Covid & have them describe the misery..the harrowing circumstances..I feel guilty & shameful we haven’t provided more answers” “And when the government assigns a billion dollars to do research and we have no therapeutics and essentially no adequately completed, robust, randomized trials, I think that the medical community has failed the Long Covid community. And I'm part of it.”
8/29/22, TLC Sessions - Living with Long Covid: Episode 43: Dr Tae Chung (Johns Hopkins) (mentions Dr. David Systrom and his work as well) "So my hypothesis is that probably at least some subset of long Covid-POTS patients, again, this is my hypothesis, is that it's probably sympathetic nerve denervation, fancy word, we call it sympathetic basal motor dysfunction denervation.” “And there's some indirect evidence suggesting that sympathetic nerve is dysfunctional in parts of long-covid patients. And basically, given that post-infectious nature, I suspect this is some kind of inflammatory, maybe autoimmune reaction, just like Guillain-Barré syndrome, they have a virus infection, the virus is all gone, maybe lingering, I don't know, but I don't know the answer. I know there's a lot of controversies there. But there's probably our bodies attacking our sympathetic nervous system, just like in Guillain-Barré syndrome. But instead of Guillain-Barré syndrome, attacking large fibro-sensory nerve, this is probably attacking the sympathetic nerve and denervating nerve that's regulating the blood flow. And hence we have this exercise intolerance and brain fog and other things.” “You don't really see that kind of nerve damage in most POTS patients. But actually, pretty good portion of our long-covid POTS patients, we see what is called small fiber neuropathy.” “They do not necessarily have these typical painful small fiber neuropathy symptoms where they present with severe burning sensation..to me, what that means is that it really just suggests that some portion of small fibers can affect it. My suspicion is autonomic nerve fibers.”
10/7/23, From TLC Sessions - Living with Long Covid: Dr. Michael Peluso (UCSF) “We know from lots of other infections that there are infection-associated chronic illnesses that have been really poorly understood and horribly stigmatized for decades…” “What I always say is that Long Covid is really our best opportunity to understand the biology of these poorly understood conditions because there was this unique confluence of factors that happened, especially in the early days of the pandemic…” “And so I really think that this is our best chance to understand not only Long Covid, but also similar conditions that are thought to be related to other infections.”
