WXPR: "Long COVID patient's persistent struggles highlight urgent need for more research" 'Hanlon used to hold a managerial role at a Fortune 500 company in Minneapolis' 'In November, 2017, he was finally diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, as well as POTS, or Postural Orthostatic Tachycardia Syndrome.' 'When the pandemic first hit, he was volunteering at an advocacy organization called ME Action.' “They sounded the alarm pretty quick, saying, if this is really a worldwide pandemic with a very infectious pathogen, there could be a wake of these post infectious illnesses that, unfortunately, are just very much abandoned by the medical silos,” he said.' 'After Hanlon’s second COVID-19 infection, his condition deteriorated further and he was diagnosed with long COVID.' 'As Director of Advocacy and Outreach for the Minnesota ME/CFS Alliance, Billy Hanlon advocates for long COVID, POTS, ME, and other conditions to get more funding for research.' “We're fighting together for this common goal to just to liberate us all from these insidious diseases, and hopefully, we can get that secured funding that it will take for these breakthroughs, because it will take, you know, hard science that that is necessary to be able to make the advancements that can lead to intervention,” he said. "In April, Senator Bernie Sanders introduced the Long COVID Moonshot Act, which would provide $1 billion in mandatory funding per year for 10 years to the National Institutes of Health (NIH) to respond to the Long COVID crisis with more urgency." Hanlon hopes that the Act passes.
I didn't bookmark any info but from what I gather today is the day that budget decisions about LC funding is being decided. There was a call for advocates to be present, send messages or phone. Not sure if anyone has more details. Edit: found one. Includes a list of senators to call and the phone number to their office, as well as some instructions.
7/25/24: 'Late Breaker: Long COVID Stories-Making the Case for a Whole-of-Society Response' by Allison O'Donnell, Deputy Director at HHS Description: 'We all want to move on from the pandemic. Those with Long COVID and the people that care for them, can't. Long COVID can impact every aspect of life. Today we don't know what causes it, how to diagnose it, or how to treat it. This session will discuss how partnerships and a whole-of-society response can help those with Long COVID today.'
Moderna, 7/30/24: 'Understanding Long COVID’s Impact on the Workforce' By: Bishoy Rizkalla, Vice President of Long COVID 'To learn more, check out the full Washington Post Live event sponsored by Moderna'
So some people may have noticed that the US Congress budget outline has been published by the US Senate. There is almost no mention of Long Covid or ME/CFS besides a few agencies being "urged to X" and so on. To massive disappointment. And that's because it's a separate bill: The Long COVID Research Moonshot Act. It was made public today: It's probably worth having its own thread, but this is very relevant to News from the USA. In my opinion this is everything. All the relevant organizations, whatever they do, must put all efforts at making this pass. Everything else they do is not even secondary, it barely matters compared to this. This is easily 100x more budget than has ever been spent on real efforts, with some loose accounting for the fact that the initial RECOVER initiative has mostly wasted its funding with a false start, so it barely counts as far as I'm concerned. But at least it would mean that this money will be able to hit the ground running. To recap how this works: the US has two equal branches of government (unlike most national legislatures, where the second is mostly symbolic). The general budget has been approved by the Senate's Health and Human Services committee and will need to pass the whole Senate, then the House, but it contains basically nothing, as far as I can tell only $13.5M for AHQR and some provisions urging ARPA-H, a cutting edge budget dedicated to medicine mirroring the technology-focused DARPA, which is under the defense department, to work at it. This is a separate bill, and will need to pass the Senate, then the House, separate from the general budget. This can pass with a huge mobilization. But only then. If representatives feel little interest from their constituents, they won't care and will vote against it. Decades of advocacy and organizations working their asses off all come down to this. This is everything, no one else will do anything close to this scale.
Columbia Univ, 4/16/24: “Symposium Honors Illustrious Career of W. Ian Lipkin” “Vicky Whittemore at the NINDS spoke to Lipkin’s “drive, rigorous research, and trust in the community” of people with ME/CFS that gave that community hope”
5/17/24, Ticktective: “Dr. Akiko Iwasaki, Voted TIME100 Most Influential in Health, Discusses the Battle Against Infectious Disease” “these post-acute infection syndromes..have been historically understudied, including ME/CFS, long Lyme & long COVID. We're trying to understand if there are any common disease pathogenesis that we can learn by studying these diseases together." “So there's still a lot to learn. But, you know, that's why we need trials. We need more and more trials to understand better what is that helps people and how we can sort of deploy that as soon as possible.” “..if autoimmunity is a part of the equation of long COVID, if we can suppress this endogenous retroviral activity inside with Truvada, we may benefit the patients that way as well. So we're looking at a couple of different reasons and angles of which Truvada might be helpful..” “Yeah, well, thank you for this interview. I really appreciate it. I think that unfortunately long COVID, long Lyme and ME/CFS are still being dismissed by some doctors as being not real. And we're really trying to correct that view by providing a solid scientific evidence for disease mechanisms and even just disease biomarkers. And also for the patients, I can't imagine what they have to deal with on a daily basis to just having to deal with so many different conditions that are debilitating. But at the same time, I feel optimistic, I feel hopeful because of sort of daily and weekly reports showing multiple key fundamental features associated with long COVID that's really leading us to a much more clearer picture of what may be going on. And even though it's heterogeneous and complex, we are untangling at the surface of this disease what's going on. And of course, we have to peel the layer to the very core, but we are peeling the layers right now. So I feel optimistic that we can move forward in a very meaningful way in the near future. Again, as scientists, we can never promise anything, but just know that we're working really hard towards that goal.”
5/5/21, "Social Distance: Long COVID Questions Answered” Iwasaki: “..one of the most common symptoms that people with long COVID have, is this very severe fatigue…brain fog, inability to think clearly, remember things and other cognitive issues..” “So in order to explain that, I think we need to introduce a couple of theories about long COVID. So long COVID can be mediated by a persistent virus infection that is stimulating inflammation in a person for an extended time period. So if that reservoir were to exist, it must be deeper in the tissue somewhere. So that could be hiding and that's what's making you still really sick. Yes, the second theory is that long COVID is created by auto-reactive cells or autoimmune cells and antibodies..auto-reactive cells are really difficult to get rid of.” “it's hard to say how long long COVID will last based on experience with other other post viral long term symptoms. In some people, this could last for a very long time. People with other viral syndromes, after acute infection have been suffering for years or decades.” “I think a lot of COVID and long COVID patients haven't had people believe them or haven't had access to responsive, you know, healthcare, which was huge.” “we are hoping that our new study of studying the immune system, immune response in long COVID, will highlight some of the pathways that we can interfere to make some of these symptoms go away.” “But if it is autoimmunity, we need a completely different way of dealing with it to just sort of tamp down the autoreactive cells from becoming more activated. And that would require completely different kinds of therapy. So really understanding the disease process itself." “So I'm interested in the role of the immune system in long COVID. So whether we should enhance the immune response to get rid of the reservoir virus or whether we should be tamping it down. And I believe the answer is going to be different for different individual.”
2/29/24, Conspirituality: “Long COVID with Tara Haelle” (and wikipedia of Tara, science writer at Forbes, if helpful) (On NIH RECOVER) “there's a lot of frustration about that within the long COVID community...” “So I don't know if that's because of a difference in priorities. I don't know if it's, you know, oh, we have to know more about the disease in order to treat it, or if they just don't know which treatments to use.” “But I know that there are a lot more drugs that other researchers want to test that they can't get funding for. So, you know, there is that. But they have found some, that immune study I mentioned, the one, it was done by Akiko Iwasaki, that immune system, like differences that was found, that was from that study, which is useful. So, I mean, it has found some good things, but I, there's a lot of frustration and disappointment from it as well.” “I've since learned that people with ME deal with this double devastation of a chronic, often unrecognized and largely untreatable illness along with being mischaracterized as exaggerating, playing the victim or basically being hypochondriac.” “It's often a life sentence with very little possibility of parole. It's bleak and it's unsupported by medical people and it's very misunderstood by lay people. The other thing I'd like people to know is that they actually can help.” “And I think this is a good place to pivot, which is a question about how the long COVID community is learning from these chronic disease canaries in the coal mine, like people who have been suffering with ME/CFS for a very long time.” “…long COVID's arrival is what allowed ME/CFS people to be heard at a greater level than they had heard before. They'd been screaming all along. It wasn't their fault they weren't being heard. Amazing, yeah. They were saying, look at me, look at me, look at me, listen to me. And some scientists were listening, but most weren't. They were dismissed..And I think what happened with long COVID is when a whole bunch of people experience these symptoms in a very short period of time with a very clear underlying cause, the acute infection, we couldn't ignore it, right? And yet we still are, right? So it's, on the one hand, like you couldn't possibly ignore this. There's just, like I said, those three cities combined, 8.7 million people currently, there's just too many people living with it. And yet they still are facing that. So on the one hand, it finally forced a lot of doctors and scientists to take other conditions that people had been screaming about seriously. Oh, maybe those people weren't crazy, right? And it is allowed the long COVID community to give a boost to those individuals. Now at the same time, yes, the long COVID community is learning from the ME/CFS community. And I think the biggest thing they're learning is that you have to do a lot of your own research. And those are some scary words.” “I do think that the long COVID community is learning from ME/CFS people, if not just doing their own research, also how to organize and advocate for themselves. And the combined voices are making a difference.” “I know that we would not have had that RECOVER study if not for the patients advocating for themselves. That RECOVER study would not exist without the patient saying, give us a damn study. We need you to f*cking study this stuff, right? And I'm using those words intentionally because they needed to make themselves heard. And imagine how hard that is to do when you're already living with this condition, right? Yeah, so using the tiny amount of energy you have to advocate for yourself and research and organize.” “With long COVID, researchers, whether because of curiosity, whether because they've learned their lesson, whatever the reasons, they are partnering with these communities. And that means that there's two-way education going on. It means that patients are learning what the scientific process is and how it works and how things are assessed. And I think that's a really positive development. So I have more hope with the long COVID sort of giant social experiment than the failed non-experiments because they weren't experiments because we ignored them of past conditions. It doesn't mean I have Pollyanna hope. I mean, we can still f*ck this up.”
8/5/24: Kaine, Duckworth, Markey Press Social Security Administration to Help Those with Long COVID Overcome Barriers to Disability Benefits “SSA should address the barriers those living with Long COVID face in accessing the benefits they have earned. There are straightforward steps SSA can take to make the disability application process easier and more transparent,” the senators continued.' "We request a response by September 30, 2024 on the actions SSA is taking to address issues facing those living with Long COVID. Thank you for your attention to this critical matter.”
Governor Tim Walz just picked for VP selection on Democratic ticket. The Hill: “Harris picks Walz for VP” “Vice President Harris has chosen Minnesota Gov. Tim Walz (D) to be her running mate as she heads toward a November faceoff against Donald Trump..” In May '23, Minnesota became the first state in the US to pass dedicated funding for Long COVID & related conditions (including ME & POTS), with Gov. Walz instrumental in leading this legislation: 'Gov. Walz budget proposal seeks $6.3M for emerging long COVID crisis' (March 2023) Walz first proposed this inclusion in the Governor’s budget, that ultimately then passed through our House & Senate chambers. He proposed this first in 2022, that cleared the House but not Senate, and then re-proposed it again in 2023, that ultimately made it through. We’ve been grateful for his dedication in this field and his partnership with state organizations in MN. And from this past May: https://twitter.com/user/status/1789258201013039157
Mother Jones by Julia Métraux: "Tim Walz Is Leading the Way on Long Covid Funding" "Under the VP nominee, Minnesota was the first state to fund research on the debilitating condition" "Under Walz’s leadership, in May of last year, Minnesota became the first state to dedicate funding to Long Covid and associated conditions, including myalgic encephalomyelitis/chronic fatigue syndrome and postural orthostatic tachycardia syndrome. Billy Hanlon, the Minnesota ME/CFS Alliance‘s director of advocacy and outreach, says that Walz was instrumental in pushing for the legislation.' "ME/CFS and POTS are not new conditions, but patients with both have long experienced their symptoms being dismissed by physicians. A 2016 study estimates that around one in four people with ME/CFS are largely confined to bed by their symptoms." “As Vice President, we hope and urge Gov. Walz to continue to prioritize this crisis that is impacting over 20 million Americans and only growing,” Hanlon told Mother Jones. “It will take our highest levels of leadership at the federal level to respond with the urgency that this crisis demands.” "Now, with Walz a prospective Vice President, Long Covid and related conditions may have a more highly placed advocate than ever before—with a demonstrated record of working to combat this post-infectious disease. Hanlon says a federal response “should include increased baseline funding to the NIH and federal health agencies to support the expedition of clinical interventions.” “Just as COVID-19 is not going away,” Walz wrote in his 2023 funding proposal, “Long COVID is not going away.”
10/31/20, Let’s Talk ID: “Seven Months into COVID-19: Where Are We Now? w/ Dr. Jeanne Marrazzo” “The challenge remains..I mean, we’re seeing so much post-COVID persistent syndrome with mental fog, fatigue…we really don’t know how to treat these people.” 6/18/20:”COVID-19: What We Know Today” with Dr. Jeanne Marrazzo" “…I'm really worried about the long-term pulmonary and cardiovascular effects…given the long-term kind of hyper inflammatory intravascular syndromes that we know occur...so I think it'd be a fantastic thing that we need to study and really understand.”
Mercury News: 'County Supervisors Hold Hearing on Chronic Fatigue Syndrome' 'Aug. 29 event features panel of medical experts’ Santa Clara County Supervisor Joe Simitian, chair of the Health and Hospital Committee, is convening a special hearing on chronic fatigue syndrome and its links to long COVID on Thursday, Aug. 29, 2-4:30 p.m., held in the Board of Supervisors Chambers at the County Government Center, 70 W. Hedding St., San Jose. Chronic fatigue syndrome is a long-term condition that that keeps people from doing their usual activities. It causes severe fatigue not improved by rest, problems thinking and sleeping, dizziness, pain and many other symptoms. There’s currently no cure. Simitian will moderate the discussion along with and Supervisor Otto Lee, Health and Hospital Committee vice chair. Panelists include staff from the Center for Complex Diseases, EVMED Research, Bateman Horne Center and Santa Clara Valley Medical Center. The hearing also be streamed live on the SCCgov chambers YouTube channel, and a video will be posted at supervisorsimitian.org. Panelists include: •Bela Chheda, MD, physician at Center for Complex Diseases •John Chia, MD, Founder of EVMED Research •Melanie Hoppers, MD, physician at Bateman Horne Center •Supriya Narasimhan, MD, Chief of Infectious Diseases Division, Medical Director of Infection Prevention, and Hospital Epidemiologist at Santa Clara Valley Medical Center •Angela Suarez, MD, Medical Director of Primary Care at Santa Clara Valley Medical Center https://d5.santaclaracounty.gov/hea...434CbZBsIlVY0sqcyk_aem__xDVO3CTYCLz0yx2Um7zuw
Upcoming webinar: "Long COVID: An Emerging Global Health Crisis" Tuesday, August 27th, at 11:00am EDT (10:00am CDT, 5:00pm CEST). Guest speakers include Nancy Klimas and Ziyad Al-Aly Registration link: https://miami.zoom.us/webinar/register/WN_OzOaJ5dkS2q9dgktKVqsEA?os=ipad#/registration
Colorado Boulder: 'Long COVID link to cortisol and hair-trigger stress response explored’ Excerpts: 'The study was funded by the nonprofit PolyBio Research Foundation' 'Proteins left behind by COVID-19 long after initial infection can cause cortisol levels in the brain to plummet, inflame the nervous system and prime its immune cells to hyper-react when another stressor arises, according to new animal research by CU Boulder scientists.’ 'To explore just how such antigens impact the brain and nervous system, the research team injected an antigen called S1 (a subunit of the “spike” protein) into the spinal fluid of rats and compared them to a control group.' 'After seven days, levels of the cortisol-like hormone corticosterone plummeted by 31% in the hippocampus of rats exposed to S1. That is the region of the brain associated with memory, decision making and learning. After nine days, levels were down 37%.’ “We show for the first time that exposure to antigens left behind by this virus can actually change the immune response in the brain so that it overreacts to subsequent stressors or infection,” said Frank.’ 'He theorizes that the process might go something like this: COVID antigens lower cortisol, which serves to keep inflammatory responses to stressors in check in the brain. Once a stressor arises—whether it be a bad day at work, a mild infection or a hard workout—the brain’s inflammatory response is unleashed without those limits and serious symptoms come screaming back.’ 'Rooting out the source of antigens—including tissue reservoirs where bits of virus continue to hide out—might also be an approach worth exploring.' “There are many individuals out there suffering from this debilitating syndrome. This research gets us closer to understanding what, neurobiologically, is going on and how cortisol may be playing a role,” said Frank.
