I transcribed some snippets from all the guest speakers: David Penn Hollis Mickey Sallie Rediske Donna Aderhold Simonetta Mignano Michael Dickerson Francesca DuBrock Mercedes Harness Sara Tabbert
Disability Network West Michigan: "Let's talk Long COVID: Part 1" with Dr. Walter Koroshetz, NINDS, Dr. Katharine Seagly, Director of the Traumatic Brain Injury, Univ. of Michigan & Becca Squires, clinical social worker - Univ. of Michigan, program coordinator, post-COVID and Concussion clinic Koroshetz: "You look at the symptoms that people with Long COVID have and then you look at the symptoms for..ME/CFS, there's a gigantic overlap" "We have a lot of work to do" "Our Institute & the National Institute of Allergy infectious Disease been working on ME/CFS for a couple of decades - no one's been able to figure out what causes this chronic illness in people who had an infection & then never get better from it so so we got worried right away" "We would not leave any stone unturned and we'd be looking everywhere we could possibly look at to try and get an answer to this problem hoping that someone else is going to get it quicker.." "I want to talk a little bit about what we think might be going on but as I said we don't know exactly what's going on yet to cause this chronic illness these are the main theories...one of them could be persistent viral infection due to the virus it just really doesn't go away it's hiding..somewhere in the body..one possibility is that COVID activated another virus - culprits here is Epstein-Barr virus which causes infectious mononucleosis...and the other one is that the immune system was was pushed to respond to the virus and it kind of pushed it over the cliff and now your immune system is not working normally - it's not resetting..."
Disability Network West Michigan: 'Let’s Talk Long COVID: Part 2' With Dr. Ziyad Al-Aly, M.D, Veterans Affairs St. Louis Health Care System and named one of 2024 Time magazines “Most influential in Health" & Krista Coombs Director of Policy/Programs with COVID-19 Longhaulers Advocacy Project and Long COVID Advocate with the Vermont Center for Independent Living.
Consortium of Universities for Global Health: 'Long COVID: An Emerging Global Health Crisis | CUGH 16th Annual Conference' Feb. 23, 2025 in Atlanta, GA Panelists/Presenters: - Ana Palacio, Univ. of Miami - Ziyad Al-Aly, VA St. Louis - Esteban Ortiz Prado, Universidad de Las Américas (EC) - Joan B. Soriano, University of Madrid
Join us for Dysautonomia Advocacy Day! Dysautonomia International invites US patients, family members, clinicians, researchers and allies to join us in Washington, DC on Wednesday, May 7th, 2025 for Dysautonomia Advocacy Day on Capitol Hill. There is a mandatory training in DC for all advocates on the evening of May 6th. LINK
Denver Gazette: “Do you struggle with the symptoms of long COVID? The Denver Gazette wants to hear your story” “We’re trying to understand the overall burden of long COVID in Colorado,” said Rick Devoss, who recently co-authored a study…’
(~20 min audio segment) Colorado Public Radio News (CPR): 'Long COVID; The ongoing battle' '...we look at the lasting impact of long COVID in Colorado...Dr. Sarah Jolley from the UCHealth Post-COVID Clinic discusses treatment options and the uncertain road to recovery...Denver7’s Oscar Contreras shares his personal struggle, detailing ongoing symptoms… ' Extracts: Contreras: “writing news stories, which usually take 5-10 minutes now take 30-40 minutes…like a wall in my brain. Thoughts that couldn’t come out from my brain to the keyboard....I didn’t know what Long COVID was..it never occurred to me…going to the doctors, all these type of brain scans, they see nothing wrong…” Hosts: “what can we do - society, what can we do to better support? Contreras: “I think it’s a systemic issue…it needs to starts with governments, with public health officials…they are not informing the public that this condition can have…” Jolley (of RECOVER): "I would say the most common symptoms we see are long-term fatigue, brain fog..long-term heart effects including palpitations.." "We are also, luckily, in a phase of doing clinical trials where we have therapies that are starting to be targeted at the mechanisms of Long COVID - things like persistence of virus, immune dysregulation - we will hopefully have those trials coming out with results in the next 6 to 12 months, which will really advance our therapies" "We have learned a ton in 5 years. More than I think we expect in biomedical science, in part because of the response and attention that's been put to Long COVID. We've learned a lot about the foundational biology and that biology is now actually helping us to do clinical trials with targeted therapies, to be able to hopefully be able to really improve the lives of patients with Long COVID...we certainly have much more to learn, but we've learned a lot in 4 years.." "..we're also doing a lot across the state to help primary care providers help understand Long COVID more so that patients can hopefully get treatment in their home communities as well..."
The American Association of Immunologists: 'Long COVID: An Often Invisible Disability' 'Lisa McCorkell, co-founder of the Patient-Led Research Collaborative (PLRC), knows firsthand the debilitating effects of Long COVID.' 'On February 26, 2025, at AAI’s first ever congressional briefing, McCorkell shed light on the reality of Long COVID as an often invisible and episodic disability—one that disrupts millions of lives yet remains widely misunderstood and underrecognized' 'Despite these challenges, there is a clear path forward. McCorkell stressed the need for sustained federal funding for research, including efforts to identify biomarkers and develop targeted treatments. Expanding clinical trials is crucial, as is meaningful patient engagement in research and policy discussions. ' 'But for the more than 20 million Americans suffering from this condition, progress is not optional. “We must ensure that we are not set back, but that we continue to move forward,” McCorkell concluded. “This is a crisis, and we need a robust response to match its scale.”
Boston Globe: 'Why is there no national day of remembrance for those who died of COVID-19' 'In 2021, Massachusetts State Representatives Natalie Blais and Mindy Domb introduced a House resolution to create an annual COVID remembrance day, but it never got a vote. A spokesperson for Domb’s office said this session she is focusing on bills addressing long COVID research; Blais’s office did not respond to a request for comment’
Post Bulletin (Rochester, MN): 'John Marshall sweethearts open up about chronic illness' 'Amy and Lance Blackstone's long COVID diagnoses have changed the course of their lives. With their podcast, they aim to help people "understand the world from other people's perspectives" 'Amy started experiencing long COVID symptoms after her initial illness in March 2020...Amy dealt with intense headaches, brain fog and trouble focusing. With her long COVID symptoms persisting, she has limited bandwidth for activity before the brain fog and fatigue kick in.' "She has about two good hours a day," Lance said. '...Amy said the experience of having long COVID has been isolating. Podcasts have provided not only a low-effort pastime, but also a new sense of belonging.'
Why is PubMed down? It's run by the NIH and the main way to search for academic papers. What is going on?
PubMed has been down since yesterday. It's the largest database of biomedical literature in the world with 37M citations. If this is a result of Trump's NIH funding freeze, it's extremely bad news for scientific community not just in the US but across the world. https://twitter.com/user/status/1896159075131621620
An article from four days ago Will they come for Pub Med next? - Here’s what we lose if the administration take away this invaluable resource see https://www.medpagetoday.com/opinion/second-opinions/114383 I saw the article briefly then it required I register to view it.
Hilda Bastian's blog post that includes some alternatives to PubMed: What if We Can’t Rely on PubMed? Briefly: EuropePMC Crossref OpenAlex If ClinicalTrials.gov goes down, the primary alternative she suggests is the WHO international trials portal.
Unbelievable. It is as if the USA want to persuade the rest of the world that it is a banana state. Which maybe now it is. Some us have been sceptical about any claim that the USA has a credible academic output for some time. But this is a bit like putting a moustache in felt pen on the Mona Lisa and then cutting her up to make paper darts.
NPR: 'It's the 5th anniversary of the COVID pandemic and we want to hear your experiences' 'How did life change for you? Did you lose your income?' 'We want to hear from you.' 'Please fill out the form below and an NPR producer may be in contact for an upcoming story’
There has been a lot of good work by ME/CFS and long Covid advocates in the US lately. Catching up with the news posted by @Dakota15 and others over the last few days inspires hope. It was good to read the compelling testimonies given to the Alaskan Congress transcribed by @forestglip here; I hope the congress listened.
It's been intermittently unavailable in time and geographic location over the last 24+ hours. This appears to be a DNS issue. Currently the authoritative nameservers are all unavailable, so cached data via Google or Cloudflare might still be working. https://www.nslookup.io/domains/pubmed.ncbi.nlm.nih.gov/dns-records/#authoritative still returns —
UCSF: “I’m a Long COVID Researcher. And I Have Long COVID” ‘How a UCSF epidemiologist applies her scientific and personal experience to research this debilitating condition’
