News from the USA, United States of America

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.'
 
Dakota15 said:
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.'
Click to expand...
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.
 
Last edited:
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.
 
Dakota15 said:
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.'
Click to expand...
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.
 
Dakota15 said:
(This morning on ESPN about Boston Celtics NBA player Kristaps Porziņģis)

Reporter Brian Windhorst: ‘I spoke to him last night. He just described what happened to him in the last few days as ‘a big crash’. He said he was managing what he was dealing with relatively well and he’s had this crash and he feels it from a fatigue standpoint. That’s why they didn’t start him last night. Now when you hear he’s sick, he’s not sneezing, he’s not wheezing. He’s feeling incredible fatigue. Boston is one of the leading medical cities in the world. He is an NBA player with a huge investment in him, trust me, they’ve taken him and had all these specialists look at him. This is a problem. He was managing it well. He said it’s killing him that it’s happening now, but he is not himself. He admitted that.’
Click to expand...

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.
Dakota15 said:
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..."
Click to expand...
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."
 
Last edited:
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..'
 
Last edited:
(8 minute video ft. Dr. Janko Nikolich of Univ. of Arizona, RECOVER PI, along with several patient testimonies)

Arizona Illustrated: 'The Long Shadow of COVID'

'Faced with a frustrating array of over 200 potential symptoms, many individuals endure a slow and challenging path to understanding their condition. Yet, amidst this uncertainty, the scientific community is making promising strides towards illuminating the biological mechanisms of this persistent illness, offering a beacon of hope for those yearning for relief and recovery.'

Nikolich: "It is really a national economic issue and a national security issue..these people, not only are not imagining that this is happening, they need help. It is really in the interest of all of us to provide it."
 
Last edited:
Science: 'What does the new FDA framework mean for the future of COVID-19 vaccines in the U.S.?'

'Will people with Long Covid be able to get boosters?'

'Neither Long Covid, a chronic illness from a COVID-19 infection, nor the related condition myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is included on Makary and Prasad’s list of underlying conditions that increase the risk of severe COVID-19. That means it may be difficult for some Long Covid patients who do want a new booster to receive it based on that diagnosis alone.'

'Still, several conditions listed as part of the new framework’s risk assessment criteria, including mood disorders and “physical inactivity,” frequently appear in people with Long Covid and ME/CFS, so many may still be able to be vaccinated.'

'...Überla says. “We do know that the vaccine protects against Long Covid, but whether the fifth booster makes any difference is unclear,” he says.'
 
KSTP: 'Long COVID patients urged to enroll in U of M clinical trial'

'The University of Minnesota is one of a few colleges participating in the nationwide study “Reverse LC,” to see if the FDA-approved drug Baricitinib'

“I can’t, you know, walk, or drive, or cook, or clean, or go out for dinner. I can barely leave the house because of the fatigue.”

Three other universities, including Vanderbilt University Medical Center, are enrolling or plan to enroll patients soon.

“The trial is specifically enrolling individuals who had neurocognitive deficits develop after they were infected with SARS-CoV-2,” Bramante said.

Her goal is to enroll 135 people and conduct the trial in smaller “batches” over the next couple of years.
 
Last edited:
You must log in or register to reply here.
Back
Top