Tiny Matters podcast (47-minute episode), from the American Chemical Society: “Long COVID: What We’re Learning about Pathogens and Chronic Illness Goes Beyond COVID-19” (YouTube link here) Episode description: “On the newest episode of the Tiny Matters podcast, from the American Chemical Society, hosted by Sam Jones, PhD and Deboki Chakravarti. This episode tells the story of Long COVID and ME/CFS, and features Ryan Prior, Michael VanElzakker as well as Abby Koppes PhD.” "Although we have a ways to go before we understand a disease as complex as Long COVID, over the last few years scientists have made significant research strides and the millions of people suffering from Long COVID have brought light to health conditions including ME/CFS, that many people didn’t previously realize existed. In this episode, you’ll hear from an ME/CFS researcher, a Long COVID patient about her difficult and winding experience to understand what was happening in her body following a COVID infection, and a journalist and author who recently wrote a book on Long COVID.” Transcript of the episode available here: https://www.acs.org/pressroom/tiny-matters/long-covid-pathogens-and-chronic-illness.html "Sam with Michael VanElzakker: And hopefully this ultimately ends up helping a lot of people who maybe for decades have felt like no one is paying attention."
Whew. This is a mess. It mixes up far-right conspiracy theories centered around Fauci, from a perspective that it was an overreaction, possibly a Chinese weapon, but also often that the pandemic was mostly a hoax, along with Long Covid, and it's an op-ed published in the Epoch times, which was just this week found to have been running a money laundering operation, and is owned by the Falun gong. It's not a real journal, more of a conspiracy/disinformation factory. Bit funny that people who don't think the pandemic was worth all the trouble may have concerns about LC. But also when you look at the history prior to LC, including Fauci's role in dismissing ME/CFS, it all basically sounds like a completely nuts conspiracy theory. I mean, the medical profession pretty much conspiring to cover up a highly disabling chronic illness affecting tens of millions? It all easily sounds insane.
Yeah, it's a mess. Also it's fairly common knowledge that Senator Marshall's young son is a Long COVID patient (I'm sure you remembered that part, but sharing to those who may have not known), which is why he's been a vocal supporter for Long COVID (ie, at the January Senate HELP Hearing calling for more funding, accountability and faster treatment timelines). Putting this in the Op-Ed with the conspiracy framework made it more confusing.
Daily Emerald: “The Unseen Impacts of COVID-19” “Hines..was diagnosed with postural orthostatic tachycardia syndrome (POTS). Once able to bike from Portland to Seattle, Hines now struggles to stand in line at the grocery store as a result of Long COVID” “Smith has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), another chronic condition prevalent among people with Long COVID. With ME/CFS, Smith experienced periodic post-exertional malaise (PEM) crashes that left her bedridden for a week or longer if she spent just a few hours climbing.” “My body was screaming at me, and to be told by these doctors that it was all in my head — that I just needed to power through it — was very invalidating and traumatizing.” “A few weeks following her release from the crisis center, Smith came across a Washington Post article discussing the relationship between Long COVID and ME/CFS. Over two years after her initial infection, Smith diagnosed herself with Long COVID.” “For those with Long COVID, returning to normal isn’t an option.” “We all feel isolated, lonely and abandoned by the world because everyone is moving on from COVID-19,” Smith says. “Yet we’re still here dealing with the ramifications of our infections.”
Washington Post: ‘Unusual’ cancers emerged after the pandemic. Doctors ask if covid is to blame' 'The group’s loosely affiliated members are launching research studies trying to piece together the puzzle of coronavirus infection, long covid & cancer' Wallace, a Univ. of Penn geneticist: "The effects of repeatedly getting this throughout our lives is going to be much more significant than people are thinking" “I would say most governments don’t want to think about long covid and much less long covid and cancer. It cost them so much to deal with covid. So there is very little funding for the long-term effects of the virus,” he said. “I don’t think that’s a wise choice.”
Sharing today from Moe Tkacik, Investigations Editor (and senior fellow at the American Economic Liberties Project) with The American Prospect: 'Why Is NIH Perpetuating Long COVID Denial?’ A follow-up piece on NIH, RECOVER, LC and ME. Some excerpts: 'Documents obtained by The Sick Times reveal the bastion of the medical establishment squandered a billion dollars on a long COVID study that seems suspiciously designed to fail.’ 'A prominent post-acute chronic infectious disease researcher I consulted on the documents suggested a “culture of mediocrity” was to blame.’ “RECOVER is really a disaster,” the researcher told the Prospect. “They’re wasting all this money on observational research and voodoo stuff like CBT [cognitive behavioral therapy] and sleep therapy...when if you’d given that funding instead to [specialists] we might have some understanding of why viruses are associated with these particular chronic problems by this point.” "The researcher did not want to be identified, but said their interactions with NIH had left them profoundly disillusioned about the future of long COVID research. “The hardest part for me to digest is that I really think they don’t want to listen. The tragedy is that people’s lives are dependent on them making meaningful progress, but they’re not motivated by urgency or excellence or scientific progress..the same cycle of failure after failure."
Just sharing that David Putrino was on Chris Cuomo on NewsNation last night. 7-minute segment on Long COVID (screenshot below of #MEAction protests included). Dr. John Moore from Cornell also on and mentioned “Long Flu” and had some odd testimony, IMO (mentions money doesn’t always solve problems, but we know these diseases are very underfunded so seems like a peculiar route to go). Didn’t hear connections to ME on this segment, and many comments on Twitter asking for inclusion for future pieces. Sharing just for sight. https://twitter.com/user/status/1798899349658960333
Emory University (GA), Spring 2024: "Long COVID: ‘Will We Get Better?’" "Emory Medicine magazine asked three Emory experts who specialize in long COVID to host a virtual Dinner with a Doctor with several panelists who have the condition." "Long COVID is an unwelcome guest that may steal your energy, sleep, ability to work or take care of family responsibilities, sense of well-being — even your life. Three doctors and a panel of people with long COVID symptoms came together to explore what’s on the horizon for patients" “Our understanding of this condition is evolving,” says Ofotokun. “As I am an infectious disease doctor, this phenomenon is not completely new to me. We do know that when people suffer from viral infections, many recover without any lingering effect. But a small proportion progress to develop a post-effect of this acute infection. We see this in flu as well as other types of viruses.” “We know from other viruses that there are two possibilities: after acute infection, some people may not completely clear the virus—small amounts remain in pockets of the body and can be responsible for some of these long-lasting symptoms,” Ofotokun continues. “Also, these small pockets of virus can trigger the immune system so it is continuously activated, which can lead to organ damage and symptoms like brain fog, blood clots, inflammation of small blood vessels, or autoimmune diseases.” “So this is not new,” he says of long COVID. “What is unique is the magnitude of the condition.” “The study is very comprehensive,” he adds. “It will be the largest database for any medical condition in the history of humankind. Our hope is that we can, at the least, provide the empiric evidence that long COVID is real, this is how people present who have it, and this is what it does to the body. Ideally, it will also tell us what we can do to prevent and treat it." “You are the best experts of long COVID,” says Ofotokun to the panelists. “There is no textbook on it. It’s the shared experience of all of you. Insist on talking about it, telling your story, reaching out to everyone who will listen including policymakers. That will help generate the momentum and resources we need to succeed. Don’t give up.”
For any tracking the Paxlovid trial results (from Stanford) TIME: 'Paxlovid Might Not Be the Long COVID Cure We Hoped For' “People are working on this,” senior author Dr. Upinder Singh, a professor of infectious diseases at Stanford University, says. “People are motivated." "But the new study, which was published June 7 in JAMA Internal Medicine, found that taking Paxlovid for 15 days was safe but did not improve key Long COVID symptoms better than a placebo." Stanford Medicine: 'Stanford Medicine trial: 15-day Paxlovid regimen safe but adds no clear long-COVID benefit' “...there’s nothing FDA-approved for long COVID, people continue to suffer and the numbers keep piling up,” Linda Geng, MD, PhD, said." "the 15-day course of Paxlovid...proved safe as an extended-duration treatment but didn’t lessen select symptoms of the syndrome.." "These trials are sponsored by the National Institutes of Health as well as by Pfizer, Inc., Paxlovid’s developer, manufacturer and marketer."
Abdul El-Sayed interviews Senator Bernie Sanders on the Long COVID Moonshot, 6/4/24: Sen. Sanders: "We held a hearing on it a number of months ago...it was really a very moving and disturbing hearing. Over 20 million people suffer from Long COVID. Government has spent $1.2 billion up to now. It is not enough. We have talked to the NIH about improving what they're doing. About more money in order to address the causes and try to come up with treatments that are effective. We have proposed a 10-year, $10 billion Moonshot Proposal, which will go a long way to coming up for cures for this very, very serious illness. That's something we are going to focus on." "One of the things that we had to deal with, and why that hearing was so important..there was a denial about the reality of the disease. I think we have come a long way in overcoming that. One of the things we want to do with our legislation is to educate physicians about the reality of the disease and how they can best treat the symptoms that their patients are experiencing.”
Medscape: 'MDs' One-Word Summary of Long COVID Progress: ‘Frustration' 'There is an urgent need for more funding, long COVID clinicians, multidisciplinary clinics, and education for non–long COVID physicians and specialists, doctors said.’ "Patients are still being diagnosed every day, yet the resources available are becoming less and less.” "COVID-19 money earmarked during the pandemic was mostly limited to temporary emergency measures. As those funds dwindled, governments and institutions have decreased financial support. The Long COVID Moonshot campaign, organized by patients with long COVID, is pushing Congress to support $1 billion in annual research funding to close the financial chasm." "Malcolm, who is a medical director at Real Time Health Monitoring, a private clinic in the San Francisco Bay Area that specializes in long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), said it was important for him to be with a clinical team that understood and was supportive of his treatment decisions and was able to offer clinical support for those treatments if needed." "The condition has upended lives, some losing jobs, even homes, and the mental toll is why there is a "not insignificant" suicide rate." "Long COVID has also changed the way physicians view healthcare and how they practice medicine.”
Far more disturbing is the vast majority who aren't. From the few studies we have seen so far, it looks to be about 90% undiagnosed. Roughly the same as us. And it all started with laughably inadequate resources, basically from a loaf of bread and 2 celery sticks down to a single celery stick to feed a group of 1,000. I have yet to see any evidence of that. Any at all. For sure there are probably a few thousands of them who are aware of the problem, but the institutions and systems aren't budging one bit, they're still as deeply invested in the old dogma, and psychosomatic ideology is continuing its rapid expansion of the mythical conversion disorder. It's a race between science and beliefs, and the institutions of science are almost all on the side of beliefs.
Yes indeed. If anything I’d say that they are very much herding us all back into the burning building of highly infectious lethal diseases plural. All of of them. You don’t silence the alarm system, and dial back on the proactive response for this one infection and this one alone. Infection is infection. You either acknowledge it, take preventative measures against it and treat it ….Or you ignore it ignore it ignore it. All of it. You can tell people; ‘Worry about TB and Measles and sepsis sometimes. But don’t worry about COVID-19.’ But if insisting that it’s good to spread the latter about, and a sign of mental illness not to infect yourself and others as much as possible, that will have consequences re how seriously the population broadly takes environmental hazards and infection control. Ordinary people, as individuals and unless engaged in highly organised collective action, simply can’t protect themselves from a pandemic anymore than any other threat to their lives inflicted by the wealthy and influential. Sanctions formal and informal against those taking action to protect themselves and each other among the people, add up to every kind of infection flourishing. You’re expected to come to work fever or no, think you’re going down with something, you’re not gonna test. Why would you when you can’t go off work sick any more. Lucky dip for your colleagues…or patients. It was on the healthcare system workers to say no to this. No to the escalation of an attack on the people. At scale they totally fucked it. A few medical professionals mocked and dismissed by their less conscientious colleagues can’t turn this around by themselves.
Dr. Jeanne Marrazzo (NIAID Director) at Demystifying Long COVID Conference last week in Boston on LC: "As you can tell I'm very interested in this - but, confused, frustrated & eager to learn and to help figure out what's really going on here and how we can figure out how to make people better." Dr. Igho Ofotokun, Emory University (Day 2 of the conference): "I think the take home message for me is that it's going to take all of us to figure out Long COVID. It's going to take the scientists, the community, the patient advocates, the government - the funding agency, we're going to have to come together to figure this out. The sense I get is that there's a commitment to do this and my optimistic self says, that we will get there. There are going to be mistakes here and there but we will get there."
(sharing in here too, but Mods you can delete if you prefer just in other thread) KQED: 'National Academies Pushes for New Definition of Long COVID' 'Long COVID afflicts an estimated 17 million Americans. We’ll talk about the latest Long COVID research and hear your experiences' Guests: Dr. Linda Geng, Stanford Long COVID Collaborative Dr. Linda Geng: "There wasn't a great consensus. Because of this nebulous concept of what is Long COVID, it stifles progress in a lot of ways..people then may not receive care. This is a great step forward to create a framework, and it will increase awareness and improve diagnosis, and care access for patients as well. It also legitimizes the condition. This is important - when NASEM puts out a report, people pay attention. People take it seriously. And that's what we need. We need for the public, for healthcare professionals, researchers, scientists, health agencies, policymakers to take it seriously." "There's also, historically, stigmatization, when the medical community doesn't understand the condition..." "There's some leading ideas about what may be causing Long COVID. Some of those biological mechanisms include chronic inflammation, immune dysregulation, persistent viral particles, microbiome changes...multiple pathways may be at play..." Host: "Will this help lift the stigma around people with Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis? People with ME/CFS prior to the COVID pandemic have had hard getting treated or even treated like they have a real disease. Maybe a silver lining around the pandemic is research on Long COVID, which could help everyone with ME/CFS?" Dr. Geng: "I think that's an excellent question, it's an important area of overlap and synergy. Historically, it's been a neglected area of medicine. Infectious associated chronic conditions such as Myalgic Encephalomyelitis, or ME/CFS..and because of that, there's been a lack of progress in terms of research and treatments. It's my hope that with studying Long COVID, both in attention it's getting now and what we learn from it, will provide insights and treatments for these other conditions. It's important to now recognize that Long COVID has overlap with these, meaning it encompasses them - based on the new National Academy definition - one can have both Long COVID and ME/CFS...they're not mutually exclusive. So, you can have Long COVID with ME/CFS, or ME/CFS with Long COVID.." "In terms of on the ground, in clinical practice, we certainly still have significant demand for Long COVID..." (patient calling in) "I developed in Long COVID in April 2020, after a mild infection. It's really hard for me to talk...I'm shaking listening to this program. I've had Long COVID for 49 months. So many of us with mild infections have been dismissed, ignored and gaslighted..it was a nightmare then, it's a nightmare now. I always thought my condition would stabilize & somehow I would miraculously get better. In the last 6 months, my cognitive dysfunction has worsened so badly. I can't drive anymore, I had to sell my car last week. I can't do anything. There's no help...I'm so desperate.." Dr. Geng: "That's the urgency here. Millions of people are suffering. This continues to be a healthcare crisis. We really need to push forward on those research clinical trials. Those rigorously designed trials to help us provide answers and evidence-based treatments so that FDA can approve, these safe and effective avenues for therapy." "I'm optimistic because there's a lot of efforts underway right now, especially with the National Academy Report, it's going to get attention from the public, from the government, from the health agencies, and that's what we need...we need for it to be taken seriously and we need efforts underway. From research to expanding clinical access...I'm excited that the collective effort putting forward to helping resolve this. There's still much work to be done and therapies to be had."
Institute for New Economic Thinking: “Debilitating a Generation”: Expert Warns That Long COVID May Eventually Affect Most Americans ‘..Dr. Phillip Alvelda highlights the imminent dangers of long COVID, criticizing governments and health agencies..’ “Dr. Phillip Alvelda, a former program manager in DARPA’s Biological Technologies Office that pioneered the synthetic biology industry and the development of mRNA vaccine technology…Alvelda is pushing for accountability and immediate action to tackle Long COVID…” “Let’s repeat that: At the current rate of infection, most Americans may get Long COVID.”
