ABC 7 New York: “COVID 5 Years Later: Share Your Stories” ‘Eyewitness News would like to hear your stories to share on an upcoming newscast’ ‘Some questions to generate ideas: Do you have long COVID?’ https://abc7ny.com/post/covid-19-share-stories-ask-questions-pandemic/15976902/
Center for Economic Policy & Research (CEPR): 'RFK Jr’s False Choice: Why Infectious and Chronic Disease Research Must Go Hand in Hand' 'One in five of those infected with SARS-CoV-2, the virus that causes COVID-19, experience lasting symptoms in the form of Long COVID. Approximately one in ten people who contract Lyme Disease experience persistent symptoms even after completing a course of antibiotics. And Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — a chronic, long-term illness with profound impacts on quality of life — is usually preceded by a viral illness.' 'We must fund research into treatments and cures for those who currently suffer from chronic conditions. We must increase accessibility for those with these conditions, as part of a disability justice-minded approach to health.'
Colorado Public News:'Resilience and bright sides mostly shine through as Coloradans reflect on five years since the pandemic shut the state down'' 'When he got sick, he drove himself three hours to Denver, followed by county deputies to ensure he made it to the hospital, where he was admitted with pneumonia. Papenfus eventually developed long COVID, what he calls “COVID brain.” 'He was a broadband technician with CenturyLink for 37 years. He caught the virus at the start of the pandemic, was hospitalized and on a ventilator for a time, and ended up staying two months. He retired and also developed long COVID. Five years on, it’s a mixed bag.' 'He still grapples with chronic fatigue, brain fog and diminished lung capacity. But Troutman said a long COVID patient group he joined after he got sick still meets regularly, comparing their experiences, supporting each other. “We're still a tight little group and we're getting better together,” he said. 'Clarence Troutman, who suffers from long COVID, says he now has trouble reading articles, especially if they're longer than a paragraph.'
Star Tribune: 'How COVID-19 changed Minnesotans' 'As many as 700,000 Minnesota adults endured..long COVID after their initial illnesses, according to a federal survey last fall..Scheurer is among the estimated 50,000 with severe, lingering impairments. An overreaction by the immune system seems to trigger long COVID, but why it hits some people and not others is unclear.'
In an op-ed published by Fox News Sunday, Kennedy touted the recent update to CDC guidance on “therapeutic medications.” It is also our responsibility to provide up-to-date guidance on available therapeutic medications. While there is no approved antiviral for those who may be infected, CDC has recently updated their recommendation supporting administration of vitamin A under the supervision of a physician for those with mild, moderate, and severe infection. Studies have found that vitamin A can dramatically reduce measles mortality. Tens of thousands died with, or of, measles annually in 19th Century America. By 1960 -- before the vaccine’s introduction -- improvements in sanitation and nutrition had eliminated 98% of measles deaths. Good nutrition remains a best defense against most chronic and infectious illnesses. Vitamins A, C, and D, and foods rich in vitamins B12, C, and E should be part of a balanced diet. LINK
American doctors receive limited nutrition training in med school, where subjects like vitamin A and its toxicity in excess amounts would be taught. I imagine very few traditional doctors would be of much help in recommending vitamin therapy for patients. For measles, most would recommend the vaccine for prevention rather than vitamins.
Vitamin A? Cod liver oil? Experts say there is not replacement for measles vaccination There are some uses for vitamin A in measles treatment. But it won't prevent the illness, doctors say. “The thing that I worry about is by (Kennedy) playing this up and others playing this up, it sends a false equivalency message, that somehow treating with vitamin A is equivalent to getting vaccinated, which is clearly not the case,” Hotez said. LINK
Actually, it was a lot more than tens of thousands but the graphs on this are interesting. My guess is that from 1919 to 1960 measles-related reported deaths went down maybe by 96%. I doubt that had much to do with sanitation since in the 1960s most children still got measles. The oddest thing about the graph is that even in1960 measles seems tone very under-reported. But whether this has anything to do with nutrition, either, seems to me unclear. In the UK routine hospital care for sick children probably got going in the 1940s and 1950s, fuelled, but not initiated by the NHS. I guess something similar happened in the USA. The problem of febrile convulsions became recognised. And something simple that may have made a huge difference was the general availability of paracetamol (1947) as well as soluble aspirin to block the sort of fever that is dangerous in infants. All speculative and probably notary relevant to current policy. Giving vitamin A when a child has got measles is unlikely to get their immune system up and running in time. You need to have been giving the child a decent diet from birth. And there is presumably little or no evidence for supplementing vitamin A makes any difference to risk even then.
Paul Offit (pediatrician/vaccine advisory board member-ACIP) wrote a substack email delineating RFK2's support of the very antiquated miasma theory of disease (pre-Robert Koch [pre-microbes]) which informs RFK2's nutrition and sanitation emphasis underlying the resurgence of measles outbreaks (according to RFK2's public communication on this topic). Offit's substack is a vital repository of science (truth) in this era of the dismantling the structure and mission of the CDC and FDA. He is super well-versed on vaccine safety and efficacy studies--it is his career field. Another excellent substack is Katelyn Jetelina's Your Local Epidemiologist. She is great at addressing in depth current disease issues such as bird flu, covid, Ebola, measles, polio, and more. Microbe TV which publishes a podcast every Saturday featuring Vincent Rancaniello PhD (virologist at Columbia U) and Daniel Griffin MD (Infectious Disease MD) doing their"Clinical Update" in which the week's disease data and journals and news are discussed. Excellent information, all of them. And now essential.
Assume there's a thread on somewhere but couldn't find DW: 'Have US scientists found the key to long COVID treatment?' 'COVID-19 disrupts the ability of lung tissue to repair itself and can lead to debilitating long COVID. Researchers have found a drug that could reverse the damage, offering hope for millions of people worldwide.' 'Now, a new study published in the journal Science has discovered lung inflammation is a major cause. Data in mice and humans found infection with the SARS-CoV-2 virus, which causes COVID-19, impairs the ability of immune cells to repair lung damage. ' 'The study gives hope in treating long COVID, although further testing is required for the treatment to reach clinics.' "We demonstrated that an FDA-approved drug can enhance lung recovery and reduce long COVID-related tissue damage," said study lead author Jie Sun, an immunologist at the University of Virginia. "We discovered that lung tissue from individuals who succumbed to acute COVID or suffered from severe respiratory long COVID exhibited decreased levels of peroxisomes in a type of immune cell responsible for tissue healing," said Sun. Peroxisomes are tiny organelles inside immune cells. They are detox centers that remove toxic molecules and help tissues to heal after being damaged. "This research suggests that SARS-CoV-2 leads to dysfunctional peroxisomes. This, in turn, leads to impaired healing and scarring after infection – leading to long-term symptoms," said Ziyad Al-Aly, a senior clinical epidemiologist and long COVID researcher.. 'The benefit of 4-PBA is it is already approved by drug regulators like the US Food and Drug Administration (FDA) to treat urea cycle disorders. This means it has already been deemed safe to use as a treatment in humans, which could accelerate clinical trials testing it for long COVID.' Al-Aly said the study is part of a mobilization of scientists making significant progress on long COVID in the last five years. "While we have not completely solved the puzzle of long COVID, we have made significant progress in just five years. The amount of progress made is huge in a relatively short amount of time," he said.
DW story based on: "Macrophage peroxisomes guide alveolar regeneration and limit SARS-CoV-2 tissue sequelae" (Wei et al, Science 387;6738) also "Lung inflammation drives Long COVID" (Sariol et al, Science 387;6738)
Of note, 4-BPA is an ER Stress inhibitor. Also , peroxisomes have been identified as early as 2017 through Network Analysis https://www.s4me.info/threads/machine-learning-assisted-research-on-me-cfs.5015/page-9#post-456267 and regarding ER Stress https://pmc.ncbi.nlm.nih.gov/articles/PMC8194262/
Pittsburgh Post-Gazette: 'Long COVID has impacted about 1M in Pa. But what do we know about it?' 'Practices for treating long COVID have evolved as researchers and physicians learn more' 'As researchers explore theories about the drivers behind long COVID in order to tailor treatments, one has to do with viral persistence: remnants of the SARS-CoV-2 protein that the body, for some reason, is unable to clear. Researchers have also seen signs of autoimmune dysfunction and mass inflammation from long COVID.' 'An out-of-whack nervous system is one emerging theory of long COVID and illnesses with similar symptoms, such myalgic encephalitis and chronic fatigue syndrome, or ME/CFS, which Lane’s symptoms mirrored, and postural orthostatic tachycardia syndrome, or POTS, which Apodaca’s symptoms mirrored' 'Dysautonomia symptoms were especially frustrating for Apodaca, who spent years as a high performer at his job and rarely got sick. The brain fog in particular was unlike anything he’d experienced.'
NPR: 'Scientists are making progress in better understanding Long COVID' 'Scientists have made progress in understanding Long COVID over the last five years. Patient advocates hope that research will continue under the Trump administration' Scott: "Long COVID can be debilitating for many people. Are scientists any closer to understanding?" Will Stone: "They are. Researchers have coalesced around a handful of explanations. There seem to be multiple underlying drivers of illness depending on the patient. One big focus has been the idea of viral persistence, that people never fully clear the infection. But there are others related to immune dysfunction, blood clots, the reactivation of other viruses. These could ultimately trigger symptoms like brain fog, like fatigue, shortness of breath, something called post-exertional malaise. The challenge here remains translating some of these insights into treatment. There are still no approved drugs for Long COVID. The approach is often to manage symptoms and try to improve quality of life. And what are the challenges in coming up with treatment? It comes down to clinical trials. There just aren't enough of them. A few years ago, there were a handful looking at, drugs, Dr. Michael Peluso told me by his count there are now about 50, including some that Peluso is involved in at the UCSF, but he says the reality is we just need a lot more for." Peluso: "There are dozens of existing drugs that should be tested. We have drugs that can target almost every single one of the different mechanisms we think might be contributing to Long COVID. But so far, we've launched way too few trials to actually do that with intense effort. And Scott, one of the major barriers here is that drug makers are still on the sidelines, to some extent, over and over again. The reason is, there's not a reliable biological measurement of the condition, a biomarker that can be tracked across multiple trials...We know how many people are infected. That's hard to pin down. Research, including CDC data, has found about 18 million adults in the US have long COVID.... Here's what Hannah Davis told me, she has Long COVID herself, and co founded an advocacy group called the Patient-Led Research Collaborative. Hannah: "It has been downplayed. We have seen so much Long COVID In the last year...What are you hearing from patients? More resources, more funding. The federal government has funded Long COVID research through its RECOVER Initiative. Last year, an additional $660 million was appropriated that's to be spent over the next four years, including on clinical trials. Now, obviously, there's huge uncertainty about federal funding for scientific research in general under the Trump administration. I spoke to Megan Stone about this. She's a patient and directs the Long COVID Campaign. Stone has been in DC, lobbying Senators and the administration to, among other things, to protect those funds from any cuts. Actually, this past week, she was at the confirmation hearing for Trump's pick to lead the National Institutes of Health, and she managed to get a moment with him afterwards. Meighan: "Afterwards, he said to me, we're going do the research to find a solution to this. I hope so. If the administration doesn't meet the patient community, then we will keep calling for action the same way that we did under President Biden. Regardless of party or political position, Long COVID patients have been failed by our leaders." Will: "...Stone says, Long COVID patients just don't have the luxury to sit this out over the next four years..."
