WSJ: 'Long Covid Knocked a Million Americans Off Their Career Paths' Years after infection, even answering email remains arduous for many "“It’s not going away,” he said. “It’s going to be one of another 100 conditions that we have to grapple with.” 'Walking across the kitchen of her cafe in Biddeford, Maine, in June 2020, Stacy Cooper felt exhausted.' Among its many symptoms is post-exertional malaise, which can worsen after even minor physical or mental activity. More than 5% of adults in the U.S. have long Covid, and it is most prevalent among Americans in their prime working years. “I sometimes feel self-conscious talking to my friends or family, because their life updates are about career milestones or deadlines or completed side projects, and I can’t answer in kind,” Sekar said.
SciTech Daily: 'Scientists Crack Lyme Disease’s Genetic Code, Paving the Way for Better Diagnosis and Treatment' 'A groundbreaking genetic analysis of Lyme disease bacteria has paved the way for more accurate diagnostics, treatments, and vaccines.' “This is a seminal study, a body of work that provides researchers with data and tools going forward to better tailor treatment against all causes of Lyme disease and provides a framework toward similar approaches against other infectious diseases caused by pathogens,” said Benjamin Luft, the Edmund D. Pellegrino Professor of Medicine at the Renaissance School of Medicine at Stony Brook University. 'The NIH-funded project included multiple strains of the bacteria most commonly associated with human infections and species not previously known to cause disease in humans.'
AP, 8/23: 'CDC Director Mandy Cohen holds a press briefing' Peter Marks, FDA: "I have a tremendous empathy having seen people struggle with Long COVID in their 30's & 40's.." "something that continues to be forgotten..the only way you get Long COVID is by having COVID.." Cohen: "...even if you've had a mild course of COVID in the past, that does not mean you wouldn't get a long course of COVID going forward in the future.."
Ideastream Public Radio: 'As COVID-19 surges in NEO, public health experts discuss new vaccine, long COVID research' '..one phenomenon continues to remain a mystery: long COVID' 'At Ohio State University, a team of researchers are working to develop effective treatments..' "They recently received a $15 million federal grant from the NIH to find solutions to long COVID. This Tuesday, we will speak to the project lead about their progress thus far.'" Excerpts from interview: Dr. Amal Amer, OSU: "I got COVID three times...after the second time, I suffered from brain fog..it was the most horrifying experience of my life. This was very scary..my job depends on my brain. All of a sudden I couldn't even type...it was really shocking." "..I'm reading a paper, as soon as I finish a sentence, I couldn't understand what I just read. I didn't know what to do. There is still no treatment...I was among the lucky few that recovered gradually...and gained my ability to think again..but I feel worried about those who are not that lucky and are suffering for extended periods of time - they do not know what's going to happen to them." "I was contacted by so many patients and many of them lost their jobs - lost their lives - it was heartbreaking." (on the $15 million NIH grant just awarded to OSU): "so this project is focused on what SARS-CoV-2 the virus can do to your organs so we're not just looking at the brain..we're collaborating with several people..." "We're trying to find a biomarker. We're trying to understand what the virus is doing in the lungs..in the immune system...what is happening in the brain..and the reason we need to undestand that, so then we can find a drug target..." "...if you target caspase 11, you may have an amazing drug target..." "when I was trying to describe the brain fog it's very hard to describe..." "We hope to kind the key molecules that affect the lungs, the brain, the innate immune system, and the adaptive immune system...once we find how caspase 11 can regulate all that, I'm already working with collaborators on how to do a drug target...how to target this molecule..."
@Dakota15 , your effort and attention to detail, and time to register it all here typed in word by word, is breathtaking.
Santa Clara County’s hearing on ME & Long COVID is currently on now, YouTube link to live stream if any want to view: https://www.youtube.com/watch?v=D8v_HRyWz5g https://twitter.com/user/status/1829266294392205596
(California, USA) "Santa Clara County holds special hearing on long COVID and chronic fatigue syndrome: Local health experts discuss causes, symptoms and best practices for treating debilitating illnesses" https://www.paloaltoonline.com/heal...g-on-long-covid-and-chronic-fatigue-syndrome/ -- "Panelists and commenters also described the irreversible harm that could occur when health practitioners push ME/CFS patients to exert themselves. For Enander, a six-minute walk test, that she quit after five minutes, put her flat on her back for two months, she said, noting that more training needs to be provided for physical therapists working with ME/CFS patients." -- Disappointing section: "At Santa Clara Valley Healthcare, doctors also use a variety of strategies to help patients manage ME/CFS, Narasimhan said. This includes “pacing,” which is the gradual increase of physical and mental activity to avoid post-exertional malaise. Other treatment strategies include pain and sleep management, cognitive behavioral therapy, nutritional support and techniques to improve blood circulation."
6/20/24, Salk Institute (San Diego, CA): 'Salk Institute launches Neuroimmunology Initiative with $20 million gift from NOMIS Foundation' “We are excited to take a deep dive into the understudied intersection of neuroscience and immunology" 'The Neuroimmunology Initiative will encompass two interconnected research programs: 1) Body to Brain, which will explore how the immune system and inflammation affect the nervous system; and 2) Brain to Body, which will investigate how the nervous system modulates immune responses throughout the body.' 'The Neuroimmunology Initiative will be co-led by Professor Susan Kaech, an immunologist, director of Salk’s NOMIS Center, and NOMIS Chair, and Associate Professor Nicola Allen, a neuroscientist. They will work with Professor Axel Nimmerjahn and Associate Professor Diana Hargreaves to guide the Neuroimmunology Initiative’s research aims. The team will also recruit a new cross-disciplinary faculty member and offer pilot grants to allow a broader range of Salk scientists to explore intersections between their current work and the Initiative’s aims and to infuse their research programs with additional expertise and cutting-edge technologies.' 'As part of this new Initiative, a Neuroimmunology Symposium will be held within the next year, where Salk and other leaders in the Neuroimmunology field will be able to share ideas, seek feedback, and build new collaborations in this space.' “As a new frontier of biological sciences is emerging at the intersection of immunology and neuroscience, we welcome that Sue Kaech and her colleagues at the NOMIS Center at Salk aim to capitalize on this momentum by launching this Neuroimmunology Initiative,” says Markus Reinhard, managing director of the NOMIS Foundation “This funding will allow us to tackle currently unaddressed scientific questions, opening fundamentally new areas of scientific inquiry across human health and disease, and paving the way toward innovative therapeutic interventions for a wide range of disorders that have both a neurological and immunological component, such as Alzheimer’s disease, ALS, long COVID, and some forms of cancer.”
(5 minute audio interview) AZPM: 'Investigating the mystery of Long COVID' 'University of Arizona immunologist Janko Nikolich is contributing to an ongoing national study on Long COVID. He discusses why Long COVID continues to mystify researchers...' Nikolich: "This is a very serious condition..it is pervasive..it can be extremely disabling. For some people, it's life-altering, life-changing..fatigue being one of the most consistent problems that people complain, not being able to work is directly linked to that.." Nikolich: "There is a condition called ME/CFS...if you have Long COVID, your chances of having ME/CFS is very significantly higher..." "..there is likely some virus persistence in direct damage, there is likely some immune dysfunction that predisposes somebody to have an overly aggressive immune response that is then damaging the tissues and then finally there are some problems with blood clotting. I think these three mechanisms, individually, or when combined together, probably give you most of this myriad symptoms of Long COVID.."
Why do so many researchers/clinicians feel obliged to overstate what we currently know? Why can’t they just say we don’t know the aetiology, but feel that x, y and z are currently seen as the most likely culprits, either individually or in combination?
Siouxland Proud (KCAU-TV; Sioux City, Iowa): 'Sioux City resident shares his battle with long COVID' “The post-exertional malaise. it’s a complete absence of strength and energy...cognitive difficulties sometimes. I have a hard time coming up with words and putting them into sentences.” “I was painting houses, I can’t climb a ladder with the post-exertional malaise,” he said. “I couldn’t do, you know, pushing a brush on a pole or anything. As far as my standup goes, as long as I’m sitting down, I can get through my set, you know, as well as I can..." “It’s more than just tired,” Lewis said. “And it’s not all in our heads. And we’d rather be feeling good. We’d rather be healthy. We’d rather be doing the jobs that we like to do, and out enjoying the activities that we enjoyed before.”
Press release: "#NotJustFatigue Urges NIH to Address Funding for ME/CFS, Ensure Inclusion in the RECOVER Initiative*" https://www.pr.com/press-release/919698 Post copied to #NotJustFatigue thread
Oregon Health, 8/22/24: "Long COVID research continues: what we know" "A conversation with OHSU’s Dr. Aluko A. Hope, medical director at OHSU’s Long COVID-19 Program" 'The medical mysteries associated with Long COVID are frustrating for many.'
4/10/23, Fred Hutchinson Cancer Center (Seattle, WA): 'Going long: Viruses linger with lasting impact' 'Herpes, HIV, Epstein-Barr and other viruses hang around, causing potential long-term health woes. Should long COVID surprise us?' “We’re beginning to realize increasingly the long-term impacts of viruses, the infections that they cause and the damage that our immune system can wreak on us as a result of those infections” - Jim Boonyaratanakornkit, MD, PhD, a physician and infectious disease researcher at Fred Hutchinson Cancer Center in Seattle. "Some believe EBV or other viruses may be responsible for myalgic encephalomyelitis or chronic fatigue syndrome, often referred to as ME/CFS..." "Dr. Steve Pergam, medical director of infection prevention at Fred Hutch, called the long-term consequences of infections "a really intriguing space" for new research." “There’s most definitely a lot to be learned about viruses still,” Boonyaratanakornkit said. “The hottest areas of research are EBV and long COVID.” "NIH scientists are currently examining the similarities between long COVID and other post-viral fatigue ailments such as long-neglected ME/CFS." “It’s not clear whether people with long COVID still have virus hiding in their body or if the virus is long gone but it’s tipped off an inflammatory cascade that doesn’t end when the virus goes away. Science is divided on this,” Bender Ignacio said. “We can’t rule out that there’s some persistent amount of virus in some people, but the vast majority who have long COVID, there isn’t virus. COVID-19 flipped the switch and left the building.” "..Bender Ignacio calls “immune exhaustion.” "Exhausted cells, they’re not good at killing viruses,” she said. “They’re pooped out; their T cells have immune exhaustion." "Pergam points to a flurry of interest in viral research and the body’s immune system as a silver lining. “Long COVID has provided us with a really robust opportunity to better understand this space,” he said. 'The National Institutes of Health’s RECOVER Initiative (Researching COVID to Enhance Recovery) has a number of long COVID studies running; Fred Hutch’s CCRC is also researching long COVID therapies.'
This is somewhat heartening but I wish institutions/companies would just fund ME drug studies, instead of saying 'oh maybe that at some point'. Long covid is more believed but it's not like it has a biomarker that ME doesn't. The logical thing is probably to push for non covid ME/CFS arms in long covid drug studies. This could be a good way to ensure we're not left behind or waiting years for something LC patients can already access.
In case it's helpful, here's the link to the source of the post by Brian Vastag: https://sciencemastodon.com/@brianvastag/113075062152155709 The forum does not show previews for Mastodon links, but folks can click on the link to read his post and replies (no need to be logged in to read posts/threads).
