Washington Post: 'Long covid patients are desperate for treatments. These trials may help.' 'Some trials are focusing on drugs that target the immune system, which is affected by different pathways to long covid.' “Considering how far along we are and how tens of millions of people are suffering, we’ve done very little,” said Eric Topol “It is absolutely not mysterious,” said Hannah Davis, co-founder of the Patient-Led Research Collaborative. “There really needs to be a concerted, organized and well-funded biomarker discovery effort for this problem so that we can find a diagnostic test,” Peluso said. Peluso, Ely and their collaborators are running a large double-blind, randomized clinical trial on a treatment seeking to turn off the immune “light switch that is creating this disease state, creating so much human suffering,” Ely said. The trial, REVERSE-LC, will give patients baricitinib, which is an FDA-approved immunotherapeutic drug for treating other immune disorders such as rheumatoid arthritis and alopecia areata. Another ongoing double-blind, randomized clinical trial, called ADDRESS-LC, will test a different, more specific immunomodulator called bezisterim for neurocognitive long covid.
5/15/25, Conversations on Health Care: 'Unlocking Long COVID Mysteries: Dementia-Like Symptoms & Pre-Existing Conditions' 'Dr. Gabriel de Erausquin, neurologist and leading Long COVID researcher at UT-Health San Antonio, shares groundbreaking findings..' 'His team is now studying brain imaging and biomarkers to understand the link between COVID-related cognitive decline and traditional neurodegenerative diseases like Alzheimer’s disease'
STAT News: 'Chronic fatigue patients fight back' 'Patients with ME/CFS — myalgic encephalomyelitis/chronic fatigue syndrome — know the depths of medical neglect. It is a disease without FDA-approved therapies, and with historically little federal investment in research. “It's kind of like you're just on your own to figure it out,” said Elizabeth Ansell, who founded the group #NotJustFatigue and has been bedbound for 9 years. Still, ME/CFS groups like Ansell’s are fighting back against Trump administration cuts, which eliminated one of the few remaining research centers for the condition at Columbia University. The groups have written a letter to Kennedy protesting the funding cuts, met with congressional offices, and on Thursday issued a report on the economic impacts of ME/CFS.'
I hope we fight back against that headline as well… Edit: I tried to contact author via Signal and Bluesky. She’s written a couple good articles on ME/CFS for STAT so hopefully she will get it.
Thanks @Yann04. I agree, Isa covers this usually pretty well and my wonder is if it was the editor's call. I just e-mailed too.
San Francisco Chronicle: '36 people with long COVID tested a potential treatment. Here’s what the study found' 'Yet millions are still forced to do so because of debilitating post-COVID symptoms, including persistent fatigue, pain or cognitive confusion.' On Friday, study leader Dr. Michael Peluso of UCSF revealed the results to fellow long-COVID researchers. “I’m sad to say we did not detect a significant difference” between those who got the drug and those who did not, said Peluso, who reported the disappointing outcome during a webinar sponsored by the PolyBio Research Foundation, which focuses on chronic post-viral diseases such as long COVID, Lyme disease and ME/CFS, often called chronic fatigue syndrome, and helped support the UCSF trial. “Now we have to figure out why,” said Peluso, noting that the researchers feel “disappointed but not discouraged. We knew this was never going to be an easy problem, and we’re committed to figuring it out.” “We cannot ignore this anymore,” Peluso told the audience. “We need this for the field to move forward.” Beyond viral persistence, two potential culprits are widely suspected of causing long COVID: ongoing inflammation caused by the coronavirus, and autoimmunity — when the body’s own immune system turns on itself.
The link here links to an archive version of an article titled "FDA eyes additional Covid vaccine trials, as WHO suggests no update to Covid shot".
New York Times, Guest Opinion Essay: '13 Ways to Save Health and Science' 9. Support patient-led research. Fiona Lowenstein, writer, editor and founder of Body Politic: When health agencies fracture, we shouldn’t forget the power of patients. Early in the Covid-19 pandemic, a strained health care system and confusing messages left those of us developing long Covid without guidance. So we built our own resources and infrastructure. The Body Politic Covid-19 support group grew to over 14,000 members in over 30 countries — a space for support and patient-led research, including surveys of our experiences and symptoms. The work helped secure recognition that our illness is real, leading to updated C.D.C. symptom lists, funding for N.I.H. research and the creation of long Covid clinics. Peer-to-peer support is always important, but it becomes vital during new disease outbreaks.
CLNS Media Boston: 'Brad Stevens End of Season Celtics Press Conference' (7:45 minute mark) Stevens (on NBA player Kristaps Porziņģis): “The way it was described to me was just post-viral syndrome, which is just lingering effects of a long illness, and I think we’ve seen that and probably all read too much about that over the last several years..."
Stevens is the coach, for context. PVS can mean a lot of things, but I’m not sure I would describe it as just «lingering effects»
Johns Hopkins: 'One Woman’s Fight for Recovery Highlights Urgent Need for Long COVID Research' "Dr. Azola diagnosed her with Postural Orthostatic Tachycardia Syndrome (POTS) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—conditions now increasingly associated with Long COVID. Since then, Shalisha has received comprehensive care and, just as importantly, hope. She has participated in several clinical research studies at Johns Hopkins to help others still searching for answers. Shalisha’s story is one of resilience—but also a call to action. Long COVID is not rare. It is not temporary. And for millions, it is disabling. Research is the only path forward. At Johns Hopkins, clinician-scientists like Dr. Azola are uncovering the underlying biology, testing treatments, and reshaping how the world understands post-viral illness. Every patient like Shalisha is not just receiving care—they’re contributing to discoveries that will save lives."
Bulletin of Atomic Scientists: 'The impact of DOGE’s funding cuts on biomedical research, from the point of view of former NIH director Monica Bertagnolli' Bertagnolli: 'The whole issue of COVID was complicated, and there were so many reasons why it was—and still is—an incredibly difficult episode for us in this country. And there’s still big parts of the COVID pandemic that are lingering. Long COVID remains a serious problem that we haven’t solved—though we’ve learned a lot, we’ve got a lot more to learn."
5/20/25, American Neurological Association: 'ANA Investigates Myalgic Encephalomyelitis in the Age of Long COVID' 'The emergence of the syndrome known as long COVID has brought new attention to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)' In this episode, we explore the advances in science that may soon lead to answers. Guests: Drs. Sonya Marshall-Gradisnik & Kiran Thapaliya from the National Centre for Neuroimmunology & Emerging Diseases (NCNED), Griffith University Interviewer/Producer: Dr. Megan Richie, UCSF
Yale Global Health Review: 'A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles' By Violet Affleck 'The phenomenon known as Long COVID poses a threat to even the healthiest individuals, with one of the largest studies finding that a quarter of young, fit Marines were impacted. At present, at least ten percent of infections are understood to result in Long COVID..' 'Arguably worst of all, though, some half (half!) of Long COVID cases trigger myalgic encephalomyelitis (ME). The hallmark symptom of ME is post-exertional malaise, or PEM, a kind of bodily overdraft fee that hits when people with ME expend energy beyond the slim “energy envelope” available to them..'
From Medscape Today: FDA Will Prioritize COVID Vaccine Approval for 65 and Older and High Risk I'm not sure exactly what this means for people in the USA who are under 65 and aren't on the "high risk" list. (I'd bet money that people ME/CFS won't be on that list) Does it mean that the COVID-19 vaccine is not recommended for anyone outside this group and won't be covered by insurance? (which is bad enough, this will make it expensive and maybe harder to find, more hoops to jump through vs. being available at most pharmacies) Or does it mean that this vaccine will not be allowed at all if you're not in this group? (can't even have your doctor get an exception for you) This quote makes it seem like it's the second option: And what if I'm a healthy person who is a caregiver to someone who is at high risk?
This is disturbing news. Pediatric deaths in the US from Covid are overwhelmingly in the unvaccinated. These include half (as I recall from Dr. Daniel Griffin's TWIV episodes) of the peds deaths in previously healthy kids. This is the dismantling of vaccines in action. Reprehensible. I guess long covid doesn't exist either in children. I hope there is sufficient backlash to at least everyone have access to covid vaccines who want them, and at a reduced cost.
Here's a link to the public comment section of the FDA website with this regulaion. People in the USA can leave a comment here. https://www.regulations.gov/commenton/FDA-2025-N-1146-0001 EDIT: I found this page with a template to help you create a comment: https://peoplescdc.substack.com/p/vaccine-access-is-under-attack-act Even if it's only 1-2 lines I think leaving a comment will help. You can make your comment anonymous, don't have to enter name/email. Pushing back on other issues has ended up changing things. Don't think it's impossible to change things!
Meanwhile, you can be damn sure the rich and powerful and their loved ones will go right on getting access to vaccines and the finest medical care science can provide.
