12/19/24, TEDx Talks: 'Long Covid’s Invisible Toll on Public Health with David Putrino' 'In this eye-opening TEDx Santa Barbara Salon talk, Dr. David Putrino, a renowned expert...explores the pervasive and underestimated crisis of long COVID' Copied to USA: Mount Sinai PACS clinic and Dr David Putrino and some posts about the talk moved there.
12/23/24, NPR: 'Patients are frustrated that there isn't a reliable treatment yet for long COVID' 'Much of the NIH-funded research on long COVID has focused on observing and understanding the disease. Some patients and doctors say the research should pivot toward finding new treatments and drugs. https://www.npr.org/2024/12/23/nx-s...-isnt-a-reliable-treatment-yet-for-long-covid
NPR: 'A push to understand long COVID' 'The National Institutes of Health announced a $300 million investment to research treatments for long COVID' 'In the US, there are an estimated 17 million adults with Long COVID. Many are unable to work or care for their families' --- Boden: "Patients tell me they're exhausted. They're frustrated. Doctors feel this way too. Dr. Michael Brode at UT-Austin says there's a lot of guesswork in treating Long COVID because there's not enough research" Brode: "I'm in this terrible position.." https://one.npr.org/?sharedMediaId=1221439460:1263933699
Yale Medicine: 'Long COVID Keeps People Out of Work and Hurts the Economy' 'Long COVID isn’t just a health issue—it’s hitting wallets and workplaces hard. Millions of Americans are struggling to return to work months after their initial infection, and the economic toll is staggering as governments and employers scramble to address this growing challenge.' 'With costs this high, virtually any amount spent on Long COVID detection, treatment, and control would result in benefits far above what it costs.' 'The NIH clearly agrees. They recently approved an additional $147 million to the $515 million allocated earlier this year, bringing total new funding to $662 million to further support the Researching COVID to Enhance Recovery (RECOVER) Initiative, a nationwide research program to fully understand, diagnose, and treat Long COVID.' 'Results can’t come soon enough.'
As this interview was about a year ago right at this time, thought I'd leave here but mods feel free to evaluate as you see fit (there is several ME mentions as well) 12/15/23, Ohio State Mednet: Post-Acute Sequelae of COVID-19 (with Dr. Andrew Schamess, Dr. Erin McConell & Dr. Aaron Friedberg) Dr. Schamess: “Brain fog…it's an intimidating symptom…there's something neurological going on that's causing cognitive impairment, and we don't know what it is..” “The concern with long COVID is that this can affect the autonomic nervous system by various mechanisms, which we will discuss, and thus cause symptoms of dysautonomia. So as I mentioned earlier, we're going to discuss postural orthostatic tachycardia syndrome" “So there's a couple of theories of why patients with long COVID can have POTS. One of them is autoimmunity, where the COVID virus is thought to attack specific receptors, such as the acetylcholine receptors, the angiotensin II receptors, which are kind of the hot spots for lots of things COVID related. The dysautonomia with long COVID can be related to neuropathy, especially small fiber neuropathy, which can cause some of those symptoms with the venous pulling.” “Many of our patients with long COVID suffer from post-exertional malaise, which Dr. Schamess alluded to. Dr. Friedberg will talk more about.” “There are many conjectures as to, you know, fun pathophysiologic mechanisms that might explain this. And I just wanted to explore a few in this discussion. One of them was the question of mitochondrial dysfunction.” “…the mitochondria, where much of the ATP, the energy for the cell, is made, and so might they not be functioning correctly as a source of this. And there are other potential links. So mitochondria actually also play a role in the cellular innate immune response.” “Another possibility is that perhaps there's impaired oxygen uptake in chronotropic responses….but based on the Fick principle, as long as there isn't some mechanical problem, if the peak VO2 is reduced, it either has to be because of one or both of decreased cardiac apocardial index or response or impaired systemic extraction. Essentially, you're either not having a sufficient supply from heart and lungs, or you're not having sufficient use of that oxygen supply in the periphery.” “this peak aerobic capacity was reduced...their body just can't use the oxygen very well.” “..post-exertional malaise is real and can be very debilitating…” “…our knowledge of long COVID is quickly evolving and advancing…” “I tell my patients, kind of the wild west of medicine right now, where we are all learning together..." "..a group of amazing people who are not only suffering from the disease, but actively involved in researching it and seeking answers to it" "I think the best thing I can recommend is to listen to your patients and to make sure that they feel heard. Because this is an invisible illness and a new one, often patients will not feel heard by their friends, family members, spouses, their physicians. And so it's so important to find out what you can about this illness and to be there with your patient and be an advocate for them.”
STAT News: 'Long Covid, AI ‘obsession,’ trust: What STAT readers thought went overlooked in 2024' 'And what they’re watching for in 2025' "I think the long Covid crisis will be big in 2025. How will long COVID be addressed in the new administration, with the expected changes with HHS, NIH, FDA and CDC? There will need to be a new infusion of funding — but will it be caught in political warfare and will the new leadership be able to meet the moment that is needed for millions of Americans struggling? That’s a big worry on millions of minds right now considering the bipartisan divide with so much, especially this disease." — Billy Hanlon
Speaking very much as a non American but won’t Long Covid require very much the funding and approach to health care that the new administration will want to defund?
Sharing for sight from Julie Sullivan (Program Manager of The Covid Recovery Center at Brigham and Women’s Hospital in Boston). New clinical trial with JAK inhibitor (Abrocitinib) sponsored by Pfizer taking place at Beth Israel Deaconess Medical Center in Boston. https://twitter.com/user/status/1873766480313196552 https://twitter.com/user/status/1873766812162375771 https://twitter.com/user/status/1873767449943998624
Science: 'COVID 5 years later: Learning from a pandemic many are forgetting' 'There’s no consensus on how the virus produces Long Covid, the debilitating symptoms that have afflicted millions...or how to treat or prevent the condition'
I assume there is a thread on this, but I didn't see, so mods please feel free to move/delete as needed. New Scientist magazine cover story this week was on “Five Years of Covid-19”. Sharing two of the several features. - New Scientist: 'Everything we know about long covid - including how to reduce the risk' 'Some people have been living with long covid for five years, but we are still just starting to learn about its exact causes and how best to treat the condition’ “There is some form of mitochondrial dysfunction happening in people with long covid,” says Al-Aly. Last year, Wüst’s team reported muscle abnormalities in people with long covid-related post-exertional fatigue, which indicated that their mitochondria weren’t working properly.” - New Scientist: 'We must revisit the covid-19 pandemic to prepare for future outbreaks’ "...there are also still questions to address with regards to covid-19. People with long covid still aren’t receiving the support that they need”
The journalistic reflex of “dumbing down” is really hurting pwME. ME/CFS -> Chronic Fatigue Syndrome -> Chronic Fatigue PEM -> post exertion fatigue
AP News: “5 things we know and still don't know about COVID, 5 years after it appeared” ‘What do we know about long COVID?’ ‘Millions of people remain in limbo with a sometimes disabling, often invisible, legacy of the pandemic called long COVID’ https://apnews.com/article/covid-va...hs-wuhan-lab-1ae8a7b3e6e034e03722f17e7aad34cb
https://www.hmpgloballearningnetwork.com/site/rheum/podcasts/leonard-calabrese-do-long-covid Leonard Calabrese, DO, on Long COVID Similarities to Fibromyalgia, ME/CFS 01/02/2025 Dr Calabrese discusses the similarities between long COVID, fibromyalgia, and in its most severe form, myalgic encephalomyelitis/chronic fatigue syndrome, and the importance of reassuring patients that their symptoms and conditions are real. [..] Secondly, for those people in the mild to moderate end of this, we treat them very much like fibromyalgia. We use very holistic care, exercise, mind-body techniques that have been demonstrated in fibromyalgia, very important, depending upon what their chief complaint is. [..] Well, as you said, this is a complicated topic, but fibromyalgia is a disease that rheumatologists are familiar with. It's also referred to as a nociplastic pain disorder, and that conjures up mechanisms of central sensitization, and this is part of the jargon of rheumatology. We understand that this is overrepresented women, overrepresented in patients with immune diseases, and it's characterized by pain, fatigue, disability, neurocognitive dysfunction, and importantly, the majority of people who have this respond to wellness and individually prescribed exercise regimen. So it's a big disease and it is something that we deal with.
KSTP: “Hope fades for proposed Long COVID research investment a year after patients pack U.S. Senate” “In the meantime, moves are being made in Minnesota. New state legislation is in the early stages and expected to be introduced this year…” “If you look at every other major disease category, it is ME/CFS, Long COVID by far — especially ME/CFS, are greatly outspent,” Schneider said. “Research currently happening on smaller scales across the country encourages her, but she said it’s not enough.” “No, there’s not enough investment right now for Long COVID and ME/CFS period. I mean, we’ve known this for a very, very long time,” she said.” “The Minnesota Department of Health is also expected to share the results of its Long COVID study in the coming weeks.” From KSTP Twitter: https://twitter.com/user/status/1876072954959733121
Today from Long COVID Clinical Podcast: "1/ ️ Episode 6 of The Long COVID Clinical Podcast explores Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and its parallels with Long COVID. Dr. Hector Bonilla shares clinical insights, pathophysiology, & treatment strategies" https://bsky.app/profile/cjchiu.bsky.social/post/3lf3gjlfncc2w (thread embedded with Spotify link)
New York Times: 'Paxlovid Improved Long Covid Symptoms in Some Patients, Researchers Report' 'But the report, on the experiences of 13 patients, found that the drug had no benefit for some people & that some who benefited said the improvement didn’t last' "..there is still little known about what can help the millions of people with long Covid." “People with long Covid are eager for treatments that can help,” said Alison Cohen, an epidemiologist at the University of California, San Francisco, who is an author of the new report and has long Covid herself. “There’s been a lot of research, but it continues to be slow going.”
Thread on this paper including its press release: https://www.s4me.info/threads/impac...ed-long-covid-a-case-series-2025-cohen.42001/
Ironic that this is the entire claim of evidence for CBT and GET. And yet the conclusion is entirely different, even though it's actually better for Paxlovid since it doesn't include insulting gaslighting denial of the illness itself, and doesn't cause deterioration like GET. Funny how that works. Almost like a religion v. science split. Almost.
