STAT News: 'Medicine struggles to define chronic Lyme. Long Covid has only made it harder' 'The two illnesses — one seeping in over the course of decades and another suddenly springing to life on a massive scale — share many qualities...' “We have to come up with a plan to care for these patients, a plan to do the research that’s needed. It ain’t going to go away,” Aucott told STAT. 'NIH funding for Lyme research has historically been low, but advocates are hoping the spotlight on long Covid will lead to more attention for other chronic inflammatory illnesses. The need is evident in social media support groups..' 'An elevated immune response can be associated with autoimmune, metabolic, neurological, and endocrine dysfunction, said Beth Pollack, a long Covid and ME/CFS research scientist at the MIT department of biological engineering. Tracking symptoms will help scientists better understand the biology of Lyme and Covid, she said.' 'In July, the NIH announced a funding opportunity for research on neurological and psychiatric manifestations of infection-associated chronic illnesses, including post-treatment Lyme and long Covid. It’s one step in the direction of what advocates and some researchers have been asking for: research infrastructure without silos, so murky areas between diseases and body systems can be explored.'
Not sure if this was already shared, but I see RECOVER-TLC Workshop Agenda is listed today. Some familiar names participating include Todd Davenport, Jaime Seltzer, Ziyad Al-Aly, Michael Peluso, Resia Pretorius, Amy Proal, Avindra Nath, Hannah Davis, Ian Lipkin, Steven Deeks, Lisa McCorkell, Julia Moore Vogel, etc.
Unbelievable. In the 'what can be learned from ME and related conditions talk' they have Nath as the sole voice of ME researchers. The NIH is still not reaching out to the wider post viral research community and at this point there are no excuses anymore.
KUOW / WBUR : "Long Covid and chronic Lyme pose medical challenges" Isabella Cueto, a chronic disease reporter with our partners at STAT, joins us to discuss how scientists are studying both conditions in the hopes of discovering new treatments 6-min audio interview, some excerpts: "Long COVID has made a lot of people aware that the fact there are chronic conditions that can arise from an infection. There's been a lot of attention on these other conditions that have been around for a long time, Lyme being one of those...these chronic manifestations of Lyme disease" "..now with all the funding into research into Long COVID, that has floated some other boats if you will, and drawn attention to figuring out these elusive questions.." "..that's the question and the debate right now...is it a protracted immune response to a virus or pathogen...other people think it's an infection continuing that's just not being caught...that's part of what researchers are looking into and trying to understand..." "...they are trying to find markers...over 10 million people in the US who have Long COVID...this is a big issue...a lot of people that are struggling day to day. Finding answers to these questions are really important."
Sharing from 9/4, The American Association of Immunologists Endorsement of Sen. Sanders Long COVID Moonshot Act
The RECOVER newsletter sent a notice that they will hold a public comment period. 30 minutes on September 24, 9:15 to 9:45. Not much. Deadline is the 20th, questions/comments/rants can be submitted here: https://forms.office.com/g/0QeZv5zjZx.
Connecticut Public Radio: 'Protecting yourself from EEE and COVID, plus an update on Long COVID' 'An estimated 17 million adults in the nation have long COVID. We’ll get updates on Long COVID and hear from a patient' GUESTS: Dr. Ulysses Wu: Chief Epidemiologist at Hartford Healthcare Emily Taylor: President & CEO of Solve M.E./CFS Initiative Professor Richard Gard: Retired Professor of Yale School of Music retired and St Thomas More chapel at Yale
I wonder if they've any idea, at all, how many times these questions have been asked and investigated. I keep seeing my mam's eye-roll when some perverse style came back into fashion for the fifth time in her life, and everybody thought they were the first to wear it.
CBS News: “NAIAD Dr. Jeanne Marrazzo gives update on COVID-19 concerns” “..the long-lasting effects of infection can be really devastating and debilitating to some people, so we need to figure that out.” said Dr. Marrazzo “As new COVID-19 strains develop, Dr. Marrazzo said data has shown symptoms of Long-COVID such as respiratory and neurological effects are a concern regarding the virus.”
1. The Story Exchange: 'Jill Biden Announces $500 Million Investment Into Military Women’s Health' 'Other health conditions that solely, or disproportionately, impact women – yet receive minimal research funding – include endometriosis, RA and chronic fatigue syndrome' 'The money will largely support research into health conditions that disproportionately impact enlisted women, veterans and their families.' 2. UPI: "Jill Biden: Pentagon to invest $500M annually into women's health research" 'She explained that the money will go toward studying arthritis, chronic fatigue and cardiovascular health' "We're going to get moving on this” 3. Task & Purpose: 'Pentagon to invest $500 million to study health issues affecting servicewomen' 'The program will fund $500 million in Pentagon research on topics like rheumatoid arthritis, chronic fatigue, eating disorders, and gynecological cancers' 4. Women's Agenda: 'Jill Biden announces $731 million investment into women’s health' 'The initiative will contribute to the research of medical issues that disproportionately affect women in military service, such as ovarian cancer, RA, chronic fatigue..' 5. "Jill Biden announces $500 million for women's health research" "This money is going to study arthritis and chronic fatigue and cardiovascular health -- it's a big deal, and it's about time," added the 73-year-old, who spoke alongside Chelsea Clinton..
Free COVID tests are back. Here's how to order a test to your home Free COVID tests are back. Here's how to order a test to your home (msn.com)
Mother Jones: 'Rep. Ilhan Omar to Introduce Major Long Covid Bill' 'The Long Covid Research Moonshot Act would earmark $10 billion to fight the condition' 'On Friday, Minnesota Rep. Ilhan Omar (D-Minn.) will introduce a potentially groundbreaking piece of federal legislation in the House of Representatives—one allocating $10 billion in funding to fight Long Covid' “Long Covid is a silent health crisis impacting over twenty-three million Americans, including one million children,” Omar said in a statement to Mother Jones. “I’m proud to lead this effort in the House to recognize Long Covid as the public health emergency that it is and invest in countering the effects of this terrible disease.” 'Long Covid symptoms often include debilitating fatigue, and many people found to have it have also been diagnosed with conditions like myalgic encephalomyelitis/chronic fatigue syndrome and postural orthostatic tachycardia syndrome. ME/CFS, which is characterized by post-exertional malaise..' 'The Long Covid Research Moonshot Act would establish a new research program within the National Institutes of Health to better understand the condition (and others, like ME/CFS and POTS) with its own database, advisory board, and a new grant process to accelerate clinical trials. ' “We must take bold action to help Americans suffering from Long Covid,” Omar said in her statement.
Solve ME: “Solve’s Advocacy Paves Way for ME/CFS Research in $500M Women’s Health Funding” “We are thrilled to see our persistent advocacy efforts bear fruit…which specifically includes ME/CFS under its ‘chronic fatigue’ designation..” - Emily Taylor “This announcement is not just a win for our community but a powerful step towards ensuring that infection-associated chronic conditions like ME/CFS receive the attention they deserve. This new funding will open the door to groundbreaking research and much-needed innovation for the millions of people suffering from these conditions.”
KQED: “Bay Area's Long COVID Community Celebrates Moonshot Bill for $10 Billion in Funding” “Long COVID patients and advocates in the Bay Area have spent years pushing for a concerted effort toward research, prevention and a cure.” “It really shows that this bill has broad support — as it should — because it’s aiming to address the crisis of long COVID in a way that puts the resources that are necessary behind it,” McCorkell said. “The symptoms of long COVID often include brain fog and fatigue. Many people found to have it have also been diagnosed with conditions like myalgic encephalomyelitis/chronic fatigue syndrome(ME/CF) and postural orthostatic tachycardia syndrome (POTS). These chronic, complex immune diseases can profoundly limit the wellness and productivity of patients and, like long COVID, are often triggered by an infection.”
NJEM, 9/11/24: “What Exactly is Long COVID?” Excerpts: “Long COVID needs to be in the discussion, the everyday discussion for physicians, for medical professionals, for researchers, for our government. We need to understand that this is a public health crisis” “I think the biggest problem is that medical providers are not engaged in long COVID. It's not on their radar. Like, the amount of money they have put into research for long COVID is like spitting in the ocean” “My name is Dr. Sue Miller. I am 51 years old, and I have had long COVID since my only COVID infection, which was in May of 2022.…my energy level never recovered. I was having headaches and terrible fatigue, and I would forget things I was a practicing neonatologist at a community hospital, and the thing I noticed when I went back to work was that I couldn't multitask. And my job is one big multitask.” “I started to feel so ill that I went back to the doctor, and I wasn't getting any results. The doctor took blood work, were always telling me basically that's a lot of symptoms, and it doesn't sound like you actually have a specific illness. I felt that they imply many a times a lot of it may be in your head. And they would tell me something like, you could lose weight, you could eat better, you could start exercising. And I walked daily for years. And after having COVID, I cannot do that. I still can't.” “I was an extremely high-functioning, athletic, smart, overachieving person. So I would take call for 24 hours, I'd go home and run six miles. Cooked my family dinner, walked the dogs, read books, and all of a sudden, I couldn't do any of that." "My whole life, I wanted to be a physician. I was at the peak of my career, and I lost all of that because of a virus.” “I saw my internist. She ordered a bunch of basic labs and an MRI of my brain. And all of that came back normal. She had no idea what was going on with me. She said that there's nothing that she can do. All she could offer me was a hug. And now, two years later, I realize that that's really common. Most doctors, they don't know anything about long COVID.” "And he said to me, yeah, you probably know more about that than I do. So me, the brain-injured neonatologist, knows more about how long COVID affects the brain than the neurologist, who is a specialist in the brain.” “After I was diagnosed with COVID long-callers, I applied for the state disability. And I got rejected. No long information, just that we don't feel you're disabled at this time.”
Boston Globe: 'For COVID ‘long haulers,’ glimmers of good news' 'Exercise physiologist Dr. David Systrom has worked with other researchers to unravel some of the mysteries of long COVID...' 'The study grew out of his experiences with patients: Prior to the arrival of COVID-19, Systrom, a critical care physician who runs a pulmonary clinic at Brigham and Women’s Hospital, had spent years studying chronic fatigue syndrome, also known as myalgic encephalomyelitis, an illness afflicting more than 3 million Americans. When Systrom saw his first long COVID patients — before the condition even had a name — he recognized their symptoms immediately. They were similar if not identical to those reported by patients with chronic fatigue.' 'A growing body of research suggests that both long COVID and chronic fatigue are post-viral syndromes that result in chronic, low-grade inflammation that can damage healthy tissue and, in some cases, the production of auto-antibodies that can attack it. Systrom and others have begun to catalog the scope of the microscopic carnage caused by the immune system’s friendly fire.'
Nature, 10/2/24: 'How long COVID could lift the fog on neurocognitive disorders' by Michael Peluso & Wesley Ely 'Insights from a new critical mass of patients are proving invaluable' 'We hope that this and similar work will open the door for studies of other infection-associated chronic conditions, including myalgic encephalomyelitis/chronic fatigue syndrome and post-treatment Lyme disease.' 'Much remains unknown about how long COVID develops and can be treated, but research on the interplay between our immune and nervous systems could provide clues.' 'This line of research could have major implications for autoimmune diseases, in general, and neuro-inflammatory conditions, in particular.' 'Funding organizations are beginning to respond. Beyond the NIH’s US$1.15 billion RECOVER initiative to support long-COVID research, institutes within the NIH are increasingly supporting studies of neurologic long COVID...It is crucial that we do not lose momentum.'
KSL: “1 in 12 Utahns suffers from long COVID, health department study says” “Personal stories from Utahns suffering from long COVID illustrate its profound impact affecting their daily life and mental health” “As he pushed himself each day, it would take a large toll on his body — something called post exertion malaise — and he could not recover. That led him to lash out at his family..eventually his principal stopped by his house..told him he needed to go on disability & stop working." "My life is completely different than I thought it would ever be," he said Wednesday at an event announcing a new long COVID study." "About one out of every 12 Utahns is experiencing long COVID and facing the physical, mental, emotional and financial impacts that can arise. There is a significant unmet need to acknowledge and support these patients and their caregivers," the report says.
2/8/21, "Pull Up a Chair with Dr. Freire: The COVID Conversations: Interview with Dr. Janet Woodcock" (Former FDA Principal Deputy Commissioner until Feb 2024) Woodcock: "NIH is starting natural history trials on this, the so-called long haulers, what we call post-viral syndromes. Now, we've always seen people who've had a virus illness. They were perfectly well. They were maybe marathon runners or whatever. They got this virus illness. And then afterward, after they recovered from the virus, they remained terribly sick and with all kinds of problems. And these are called post-viral syndromes. There might be several types of things going on. Many of them, though, are probably related to an immune response that kind of went wrong, right? Yeah, but we don't know. Maybe some of them still have the virus. So we need to look into that very carefully, and then we need to think about treatments for those people too.”
