11/26/24, 'ME/CFS and Long COVID: What's New? with Prof. Anthony Komaroff' Komaroff: 'The immune system sees the battle isn't over...with ME/CFS & certainly with Long COVID...that ongoing battle that the immune system has to fight..leading to the ongoing symptoms..' 'There at least three million people in the United States alone many millions more around the world with ME/CFS. There are 10 million with Long COVID, many would say more than that, just in the US - 70 million around the world. That has huge implications for our country, for our economy. There's about 2% of the workforce in the United States right now can't work because of Long COVID." "There is no doubt that there's much more interest in and resources for studying these illnesses now but but I'd urge people people to contact your representatives in Congress, contact the director of the National Institutes of Health, and really urge that there be more for studying ME/CFS as part of the Long COVID Initiative, as part of the Women's Health Initiative - it's by investing more in figuring out what's going wrong in the body that we're going to have the good diagnostic tests and most importantly the effective treatments.."
11/26/24, Long Covid, MD: “Don't Sleep on Your Power" Senator Lindsey Port on Long COVID Advocacy Port: “I think the thing that gives me the most hope - I know how change happens in the legislature, in state capitals - it happens by people telling their stories” “And I know it sounds really cliche, and people talk about all the high-priced lobbyists and special interests and things like that. And I would tell you for me and for most of my colleagues, the number one thing that is most effective in getting us to not just agree with a bill or be a yes vote on it but to become champions for those things is having a real person come into our office or show up on my Zoom screen and tell me their story and tell me how this piece of legislation in front of me can change their lives.” “It is the most powerful tool in state government, in federal government. It is easily the most powerful tool. That is something that we really can do to change the system.” “I am in awe of the work by Long Covid and ME/CFS and other chronic illnesses. I am in awe of the way people have come together to support each other. And I think we can use that power to demand change at the state level.” “I think the other thing I'm thinking about is how can we lessen some of the burdens, some of the barriers that are in place. And for me, that looks like I'm working on a bill for what's called the Office of Patient Protection. We're also looking at potentially adding a physician side to that as well, which I think you think of as a place where you can come with your barriers.” “There’s all sorts of these barriers that those of us with chronic illnesses have to fight through every day in a way that specifically impacts our health. Like the barriers aren't just slowing the system down. They are worsening our health while they're happening.” “…with how widespread Long Covid is, which I think we're still learning, and people are still emailing me and saying, oh my gosh, I have symptoms really a lot like yours.” “I agree both on the federal level and in Minnesota, we passed funding for long Covid, both research and outreach to communities, particularly communities of color that we know were hit hardest by Covid, those frontline workers right away. To do outreach to them, we put money in. It hasn't all been spent, but it has all been allocated. And so that is a really critical point for future administrations to not be able to claw that back.”
PS: 'Millions Are Suffering From Chronic Fatigue Syndrome — So Where’s the Urgency?' 'ME/CFS had the lowest NIH funding relative to disease burden, estimating that it would take $203 million dollars to properly address 2017 levels of burden' 'Dr. Bonilla confirms that many different viruses have been linked to ME/CFS, COVID included. "Around 60-70 percent of the patients [referred to my clinic] have a viral illness at the beginning of the disease," he says. "[ME/CFS] is a post-viral illness." 'The connection between long COVID and ME/CFS has helped raise awareness about both conditions post-pandemic, offering some new research into the processes at play. It's a welcome change for patients and experts like Dr. Bonilla who are hoping for more investment in ME/CFS and long COVID research. But there's still a long way to go when it comes to representation, care, and stigma.' 'In a glimmer of hope for the ME/CFS community, a global team of researchers recently received funding from the NIH to study cellular changes in the muscle tissue of those with ME/CFS.'
KQED: 'Stanford Doctor Tapped for Key Post by Trump Advocated for Letting COVID Spread' 'For some Bay Area patients with long COVID and their advocates, Bhattacharya’s nomination is especially concerning' Charlie McCone, 34, has had long COVID since March 2020. The San Francisco resident said many in the long COVID community were already frustrated with how the NIH was prioritizing funding and research, though they had seen recent signs of progress. “Zero diseases in the history of the world have been solved with a one-time investment of funds,” he told KQED. “We have to be serious about having substantial funds on an annual basis to actually get somewhere with this condition.” McCone praised the direction of the NIH’s approach under Dr. Jeanne Marrazzo, who was named director of National Institute of Allergy and Infectious Diseases last year. But he noted that advocates are still pushing for annual funding on long COVID research and to give it a permanent home in the NIH. “If we had allocated a one-time fund to the NIH for HIV in the mid-’80s … and decided we were going to just stop giving funds because we didn’t see a return on investment, that would have been deemed as completely irrational and completely nonsensical,” McCone said. “And so I think anybody who’s taking that perspective now, I think the same applies.”
11/29/24, 'The Patient-Led Research Collective Part 1 ft. Lisa McCorkell, Gina Assaf & Letícia Soares' LM: "Very early on in the pandemic no one was really taking these symptoms seriously. They weren't really being covered in the media, and so we felt like we had to take this into our own hands. Our doctors were dismissing our symptoms, and really not believing us or not giving us any resources." "..for things like reviews we've been able to be co-authors on two reviews at this point. The first one was with Dr. Eric Topol last year in 2023, and then this year with Dr. Aly and I think both, especially the first one, have gotten just a ton of attention. It was the third most accessed research paper in 2023 across all disciplines. Yes, there's a lot of attention on Long COVID."
The Denver Post: 'A young Coloradan learning to live with long COVID turns to TikTok to educate about chronic illness' 'Denver Post has followed Lilly since 2021..and answers as to why symptoms, including a high heart rate and brain fog, still linger'
48 Hills: 'Long Covid: The search for answers inches forward' 'Is the tide finally turning on research into the chronic illness—and funding at the federal level for prevention and a cure?' “I am optimistic about RECOVER-TLC,” McCorkell says “The Moonshot,” Davis explains, “calls for not only $1 billion per year in research funding for 10 years, but also for surveillance, public education, medical education, outcome assessments, etc. This is a rare opportunity, and we need this to pass—Long Covid is going to affect literally every family in the next few years, and this kind of funding is the only way we’re going to be able to find a cure.”
2/7/24, 'Are Monoclonal Antibodies a Possible Treatment for Long COVID? ft Prof Nancy Kilmas' "..it's an unusual study because it's funded by the State of Florida, which is very odd. They're not usually in the clinical trials business..they partnered with the Schmidt Family Initiative for Long COVID, which is an amazing foundation that's doing really cutting edge and innovative work. So, they basically were matching each other. It's a matched award to allow me to do this study" "It's our top priority. It's very hard to get things like this done quickly, but the FDA - thirty days, they were just great! I mean, honestly, the FDA did their job and did it really well." https://www.youtube.com/watch?v=Nihzqamt5xY https://twitter.com/user/status/1865792642442997871 https://twitter.com/user/status/1865792748714140156 Thread to discuss this: News from the Institute of Neuroimmune Medicine (INIM), NOVA, Nancy Klimas
12/8/24, 'Grassroots science communication in Long COVID: Talking to Ya'el Courtney, PhD' 'Dr. Courtney is a postdoctoral researcher at Stanford, where she investigates the mechanisms driving post-acute neurological conditions following infections..'
From a Propublica Reporter on Bluesky https://bsky.app/profile/phoebepetrovic.bsky.social/post/3lcv4desaas2v Would be really cool if the experiences of pwME (especially severe) were included in this article.
12/3/24: "Being Your Own Best Health Advocate with Dr. Nancy Klimas" Klimas: "these are curable illnesses & we're very very close to that...they need to hear from me, a frontline investigator, a frontline clinician - we are so close..." Klimas: "We believe that these are curable illnesses - not just treatable illnesses."
Sharing from MN (a few months late) July 2024, Long COVID Guiding Council, Convened by the Minnesota Department of Health - Long COVID Program in partnership with Stratis Health: "Update from the Field: Paxlovid for Prevention of Long COVID A Series on Long COVID" Notable findings: 'Additional studies of the potential effects of antiviral therapy for the prevention or treatment of long COVID and the populations most likely to benefit are urgently needed.' The work group members included (in alphabetical order by organization): • Jane Rudd, Essentia Health • Sandra Turbes, Genevieve • Charlene McEvoy, Health Partners • Ravindra Ganesh, Mayo Clinic • Stephanie Grach, Mayo Clinic • Tanya Melnik, M Health Fairview • Farha Ikramuddin, M Health Fairview • Sarah Lim, Minnesota Department of Health
