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.”
Although lots of people will reflexively dismiss this, I think it's entirely possible, as long as we consider LC as any new onset chronic symptoms, not necessarily disabling ones, or PEM. Unless infectious diseases peter out, and since humanity is doing everything in its power to maximize them, and especially with COVID being so infectious, there is nothing to suggest that it won't given time. Maybe it'll just be some lingering cough, worse memory, aches and pains and other issues, but as best as we can tell there is no protecting factor. We know there are risk factors, but there isn't a single known factor that is protective. Not age, not sex, not prior health status, diet, geography or anything like this. Everyone has some of the conditions within them. So it looks to me like a simple game of chance. Although it may have caused an initial surge of cases, given enough times, and COVID is given as many as there can be, I haven't seen anything that even makes it a realistic option that it will just end on its own. Every infection leaves a bit of damage behind. Most of the time it's probably insignificant, but it's happening again and again and again.
Washington Post, Editorial Board: 'Long covid might presage a wave of disability claims. Get ready' 'Long covid is a looming potential challenge to public health and governments around the world’ 'The nation must prepare to cope accurately and compassionately with a wave of illness and impairment..’
STAT News: 'Long Covid feels like a gun to my head' 'I have spent my career studying infectious diseases that fall under the heading of neglected tropical diseases. Now I have a neglected disease — long Covid — an incurable (for now and for me) disease.' 'I am inspired by the work of the long Covid Patient-Led Research Collaborative and the research being done to uncover the causes of and cures for long Covid. But it’s not enough. Given the widespread burden of disease and the losses to the economy and social fabric it is causing in the U.S. and around the globe, the U.S. government must act quickly and decisively to curb long Covid. The Long Covid Moonshot is a collective advocating for $1 billion in annual research funding for long Covid, akin to the Operation Warp Speed that enabled the first generation of Covid-19 vaccines. U.S. Senator Bernie Sanders (D-Vt.) recently released a Long Covid Moonshot legislative proposal. Bipartisan support for long Covid is essential so that someday no one needs to care about Covid and its lasting effects' 'Long Covid feels like living with a gun to my head. Please pull the trigger on the moonshot.' Rachel Hall-Clifford, Ph.D., is an assistant professor of global health, human health, and sociology at Emory University in Atlanta.
Bloomberg: 'Searching for Data on Black Patients and Long Covid' 'Moderna teamed up with Team Wellness Center, a health-care provider for under-served people in the Detroit area, and http://People.Health...to gather and organize patient data.' "I was intrigued when I was offered a chance to chat with Bishoy Rizkalla, Moderna’s vice president of long Covid. This was partly due to his unusual title, but also because two of my family members have a history with chronic illnesses that are considered very similar to long Covid. If long Covid gets more attention, maybe people with less common, but similar, autoimmune-type illnesses will benefit."
Part 2 of STAT News with Rachel Hall-Clifford, health researcher at Emory University (37-minute podcast) STAT News: 'Listen: Why Long Covid can feel scarier than a gun to the head' 'Millions of people around the world are living with long Covid, a medically perplexing, and potentially debilitating, condition. Rachel Hall-Clifford is one of them.' Spotify link to talk Patrick (host): "I'm working on a first opinion essay with a guy named David Tuller...he's done a lot of writing on chronic fatigue and Long COVID.." Rachel: "..my resting heart rate was sky high, we're talking like 130 just lying in bed..the most life-changing has been fatigue. I had no conception..this is just something entirely different...that feeling of exhaustion is how I feel a lot of the time. Really intense exhaustion. Probably about 6-9 months of needing to lie in bed to psyche myself up and muster the energy to get in the shower, and that would be exhausting and I'd need to lay back down again after that. Fatigue feels sort of vague and easily dismissed...that is not the kind of fatigue that folks with Long COVID are experiencing. This has been a disabling experience for me." "I've had to learn how to self-limit...if I overdue it one day or power through, I'll feel terrible for days after, perhaps even longer..I have to be very careful in my pacing.." (on Long COVID): "I would not wish this on anyone...being in a wave of medical mystery that has crashed upon the global population...I think it's a somewhat neglected disease that won't be able to remain neglected for long because there are so many millions of us that are getting it and continuing to get it, but I'm not sure exactly how fast we can solve this mystery and hopefully provide some relief and treatment." "I am very optimistic that we'll be able to unlock some of these mysteries soon. I'm very hopeful about antiviral research. I think there's something there...there's a couple of very likely roots that can lead to effective treatments. I'm a health researcher and work in a research university...being able to try different medications has been incredible, it's also exhausting that I'm responsible for my own care and for my own health. I have to read and try to figure out this mystery myself as much as I possibly can." "I'm already thinking about how to engage further with chronic conditions and potentially with Long COVID across global settings as a future research area."
Sharing for sight for next week (6/25) Tufts CTSI: 'a virtual briefing on Long COVID in Massachusetts on Tuesday, June 25 at 12:00PM.' 'The briefing will be hosted by Representative Mindy Domb, Representative Marjorie Decker & Senator Julian Cyr, Chairs of the Joint Committee on Public Health, Senator Jo Comerford, and the Massachusetts Black and Latino Legislative Caucus.' 'Hear from those living with Long COVID, researchers, clinicians, community organizers, and advocates. Learn about actions the Massachusetts legislature can take to best support our constituents experiencing Long COVID. The event is open to legislators, staff, and members of the public.’ Event flyer and listed speakers (Long COVID and Health Equity in the Commonwealth Part 2: Moving to Policy Solutions)
Certain details have been asked to keep private which I will respect, but just sharing some high-level takeaways to this forum that are okay for public sight (for visibility and knowledge, and hopefully to give some degree of hope that these discussions continue to develop) that following the US Senate HELP Hearing in January on LC, where NIH was not present at, there was a Roundtable meeting. This meeting followed some weeks after with members of Congress, NIH staff, and members of the patient & research community to discuss concerns that were surfaced at this hearing. Also because the aspect of Congressional oversight has been a hot topic very recently with NIH, I felt it was apt to share given timing. The meeting was held at the NIH and the NIH Director was present, as well as several Institute heads. Much like the US Senate HELP Hearing, this was described as an intense meeting with high engagement, spirited debate, moderation and a solution-oriented discussion. Bertagnolli's 6 takeaway points from this Roundtable meeting: 1. We need more funding for Long COVID research and more clinical trials 2. Focus on addressing PEM 3. Explicitly named eliminating stigma around LC & ME 4. Improve patient engagement 5. Adjust grant review process to make sure reviewer feedback is adequately considered and applicants receive feedback 6. Make all data available to the broad research community quickly Since this March meeting, some developments seem to be directly correlated to this meeting: o RECOVER has made data easier to access now (announcement here in April) o The $515 million infusion seems to now be focusing on clinical trials (declared at NIH ACD last week) o Senator Sanders released his proposal for Long COVID Moonshot in April. Hopeful that the release of the Bill will be more expansive and at minimum include comparator groups of ME, but unsure what will come of it. o NIAID then asked PLRC to submit comments for NIAID 5-Year Strategic Plan, that PLRC shared in May. If accepted, strategic plan would then include LC and IACC language as Institute priority in their strategic plan. Hopefully Bertagnolli will continue to keep this at the forefront, which it sounds like she's an ally from those who know more than I and are closer. Also just sharing as there's been wonder if NIH prioritizes PEM after the Intramural Study & at least from the very top, unlocking that is a high priority (I know these are just words but sharing for sight). Also I think the community at times is more likely to stay engaged when we can sense any sort of momentum, and I'm hoping little by little progress keeps moving forward (and the community rightfully felt a lot of strong emotions after the Intramural Study and restoring any trust at NIH will take a series of actionable items indicating feedback is being taken seriously)
'Pennington Biomedical researchers partner on award-winning Long Covid study’ 'Executive Director Dr. John Kirwan of Pennington Biomedical collaborates with research colleagues across the nation to explore potential roots of Long COVID’ 'Dr. John Kirwan is serving as a co-principal investigator on the Pathobiology in RECOVER of Metabolic and Immune Systems, or PROMIS, study. The study has been awarded more than $802,000 by the National Institutes of Health to identify potential causes of Long COVID.’ 'Researchers from Pennington Biomedical, MaineHealth and the University of Kentucky are exploring the idea that COVID19 causes inflammation which stresses the immune systems to the point of triggering secondary complications such as fatigue, weakness, brain fog, and headaches among others. If proven, scientists can develop treatments to enhance immune function in patients with symptoms of Long COVID’ 'Some of Dr. Kirwan’s other colleagues at Brigham and Women’s Hospital in Boston, Stanford University, and the University of Oregon will analyze blood and tissue samples to see if the virus is still present in patients with Long Covid. They will also find out whether the virus is generating substances that can prompt the immune system to cause fatigue, brain fog and other COVID symptoms.'
Science by Jennifer Couzin-Frankel: 'Antibodies from Long Covid patients prompt symptoms in mice' 'Two new studies suggest dysfunctional immune system attacking a patient's own tissues might drive the challenging condition' “This is strong evidence” for Long Covid being an immune-mediated disorder, and likely applies to other post-viral syndromes too, says Danilo Buonsenso, a pediatric infectious disease doctor who studies and treats Long Covid in children at Gemelli University Hospital...' “There’s no uniform autoantibodies” in these groups of patients, says Avindra Nath, clinical director of the National Institute of Neurological Disorders and Stroke. This makes it tricky to say that certain autoantibodies are causing certain symptoms—in mice or in people.' “If you think of a [typical] autoimmune disease, you have antibodies against a target and it’s the same target in all patients,” says Petter Brodin, an immunologist at the Karolinska Institute. “What’s clear is that this is not such a disease.” 'Still unknown is whether autoantibodies are the initial trigger of Long Covid in people. Nath suspects the wide mix of autoantibodies seen in patients points to some earlier chain reaction in the immune system, perhaps from fragments of lingering virus.' A direct line between autoantibodies and illness, Nath says, would be strengthened by showing that specific autoantibodies are binding to certain sites, and in turn triggering specific symptoms. Iwasaki agrees, and is aiming to push forward with such work. And Nath notes that rituximab, a drug that depletes antibody-producing B cells, wasn’t effective in a study of myalgic encephalitis-chronic fatigue syndrome – another chronic illness thought to arise after an infection. (Others point out that rituximab may not quickly erase all autoantibodies.) Nath is currently running a Long Covid trial of intravenous immunoglobulin, which broadly modulates the immune system, including neutralizing autoantibodies. Both groups say that further clinical trials of autoantibody depletion are worth trying. “We need these kinds of studies,” says Eijkelkamp, and “that’s going to be our proof” of whether autoantibodies are driving Long Covid.'
Sharing for IACC purposes. 'NY’s Sen. Gillibrand pushes for $200 million in federal Lyme funding' 'U.S. Senator Kirsten Gillibrand of New York held a video press conference to announce her push for federal funding' '..complex chronic conditions that have not been well-studied…’ 'Gillibrand is pushing for nearly $200 million for research to understand the full impact of Lyme and other tick-borne illnesses in the Fiscal Year 2025 government funding bill.’ Specifically, Gillibrand is calling for: - $30 million for the Department of Health and Human Services to implement a national strategy to address vector-borne diseases, including tick-borne diseases - $30 million for the CDC to further their Lyme disease and tick-borne illness work. - $9 million to support the Department of Defense’s Tick-Borne Disease Research Program. Because many military bases are located in regions with large tick populations, service members and their families are at particularly high risk for tick-borne illnesses - $130 million for Lyme and tick-borne disease research at the NIH
Greeley Tribune: ‘You’re in a room of people that get it’: Northern Colorado long COVID support group navigates life after COVID together’ 'The Long COVID Informational, Discussion and Support group is the only group of its kind in Colorado, according to a Colorado Department of Public Health and Environment page.' 'The facilitators allow attendees to suggest topic discussions through an online form that Light then researches and presents at future sessions. Light and Martinez brought in registered nurse Maggie Hinz and Chaplain Ryan Wooley to help run the group, forming a team with a mix of perspectives to help bridge the gap through ideas, experiences and resources.' 'He’s dealt with..nervous system dysfunction, extreme fatigue..cognitive impairment, impacting his physical coordination and thinking. Fatigue hit him the hardest...' 'The symptoms became so severe that Freeman had to quit a job he loved because he couldn’t function anymore...he’d forget what he was saying in the middle of sentences...The hardest decision you have to make some days is getting out of bed,” Moddelmog said.' 'Both men turned to the vaccine a few months after their infection in hopes it would help with lingering symptoms, but they felt their long COVID symptoms only got worse.' 'Light has called the stories of every long COVID support group attendee “incredible” because most were highly motivated, high-functioning people until they were struck down by chronic fatigue syndrome.' 'These doubts and misunderstandings can leave people with long COVID feeling isolated and alone. Like other patients with chronic conditions, long COVID patients can often lose hope in the medical system as they seek care.' 'Freeman presents with physical symptoms, but medical professionals can’t find evidence that the condition has affected him neurologically. “I don’t discredit the doctors, but … nobody’s trained for this, and the system is not set up to handle it,” Freeman said.' '“Unless you’ve had long COVID, it’s really hard to understand long COVID,” Light said. The support group further builds a community where people feel heard and validated to eliminate those feelings of isolation, uncertainty and neglect.' 'Due to the unknowns of long COVID, Light provides research updates at each session to ensure people have reliable information and a safe place to ask questions and discuss the data.' “We’re long COVID patients, too, so we’re all trying to figure this out together,” Light said. “So we’re hoping the group can just continue to grow and become this self-sufficient organism.” 'The next Long COVID Information, Discussion and Support (IDS) group will meet July 9 in the Longs Peak Conference Room at UCHealth Medical Center of the Rockies.'“
Forbes: 'Sen. Marsha Blackburn (R-TN) Warns Of COVID’s Lingering Effects On Labor: We 'Have A Workplace Shortage' 'At Tuesday's (6/18) Senate Finance Committee hearing, 'Work & Social Security Disability Benefits: Addressing Challenges..' Blackburn questioned experts..' 'it continues to be frustrating...Commissioner Wilschke, in Tennessee, we hear a lot about workforce, the unemployment numbers, the labor force participation rate..and the effects COVID has had on this. Everyone in Tennessee seems to have a workforce shortage..."
Rep. Jamaal Bowman (D-NY): "I know many people are dealing with Long COVID, that continues to be an issue that's under-discussed. So, I don't think I would support an outright ban on masks. They should continue to be optional."
Medical News Bulletin by Joanna Mulvaney PhD (6/20/24): 'Prevalence of long COVID rises to nearly 7% of population' '...the number of Americans laid low with long COVID could rise to 40 million in the coming years'
WALN (6/12/24): 'Seattle researchers say more resources are needed for Latinos with long COVID' 'In the early days of the COVID-19 pandemic, Dr. Leo Morales knew that the most vulnerable communities, particularly Latinx communities, would be the hardest hit by the virus' 'To Morales, these findings are especially concerning given that middle-aged adults and women reported higher rates of long COVID.' “This is a particularly important time in life, you’re raising a family, you’re working … and for a parent to be suffering with these debilitating symptoms could have huge repercussions not only in the family but in the community,” Morales said. “When that kind of thing happens to you, it’s devastating.” “We’re not delivering the care that people need at the moment,” said Troy Torgerson, director for experimental immunology at the Allen Institute." 'The LCH (Latino Center for Health) has presented its findings to the Washington State Legislature, recommending greater community education on long COVID...as well as greater investments in clinical care for the treatment of long COVID.' 'Last year, the LCH partnered with the Allen Institute, the biomedical research organization; the UW Medical Center’s post-COVID clinic; and several community health centers to survey Latinos across Washington who had been infected with the virus, hoping to understand how they were experiencing long COVID.' 'Research done in partnership between the Allen Institute and Fred Hutch has shed some light on what’s behind the condition. Torgerson says their research supports the idea that viral particles linger in the body after an infection, creating chronic inflammation that causes people’s symptoms.' 'The researchers said they will keep studying the condition and share their findings with the state Legislature.' '“It’s clear … how big of a problem long COVID is and continues to be,” Dr. Leo Morales, University of Washington, said. “I think more work needs to be done to better understand who is continuing to have problems and how, if at all, are they being helped."
STAT News, Morning Rounds: “Dispatches from the Aspen Ideas: Health” “CDC Director Mandy Cohen addressed a number of issues that were on attendees’ minds…that long Covid was very much on her mind because a close friend was struggling with it..”
Winnipeg Free Press: 'A heart-racing experience: Women’s lives sidelined by an illness they’d never heard of' 'As she would find out many months, tests and specialists later, Clarke suffers from a disorder called POTS..it is life altering.' 'To that end, there’s also growing evidence of a rise in POTS cases owing to COVID-19. About 15 to 20 per cent of patients who develop Long COVID will develop POTS, Seifer says. “...you can get post-illness, some of the chronic fatigue disorders, some autoimmune disorders so it can mimic some of those other conditions, also making the diagnosis a bit challenging, particularly in the post-COVID era.” 'Erika Berthelot, 33, developed POTS symptoms after having COVID in March 2023, particularly a dizziness she couldn’t seem to shake. “I couldn’t get out of bed without hanging onto walls,” she says. “As soon as I would get out of bed, I was dizzy and nauseous and lightheaded.” 'Berthelot knew her symptoms started after her COVID infection, so she posted about them in a long COVID group on Facebook.' '“And these people started commenting, you have POTS, you have POTS, you have POTS,” she says. “And it was clear as day to everybody else, except for me. I’d never heard of this condition before...as soon as I would stand up to get out of bed, my heart rate would hit like 150 or 160, and I would feel absolutely crappy, and I could barely brush my teeth before I had to go lie down again.” “I couldn’t work,” she says. “I had to hire somebody to do my job. And it was hard enough to be operating a business where, you know, I can’t afford to hire somebody.” Clarke says she lost the “power to power through.”
