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Sharing testimony today from Minnesota House of Representatives hearing to protect MN Department of Health Long COVID Program grants & appropriation funding.

Minnesota House Health Finance and Policy Committee 5/7/25 (testimony begins at about 43 minute mark)

Many thanks to the following for testifying in-person on such short notice:

Terri Wilder, Chair of #MEAction MN
Suzanne Wheeler, Minnesota ME/CFS Alliance
Ben Hsuborger, #MEAction
Linda Pozen, #MEAction
Jesse Bethke Gomez, Metropolitan Center For Independent Living

In the House document uploaded today for the hearing, there were also over 20 submissions of written testimony in support for the MDH Long COVID Program from patients, caregivers, and medical professionals (if you search LC)

Covered as well in The Sick Times today
 
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May 15, 2025 - Yale Medicine: 'Unraveling Long COVID Pathogenesis: Insights Gained and Frontiers Ahead'

10:30 AM- 12:30 PM ET - 'Hybrid event. In person and via Zoom'

'This symposium represents the culminating session and 'report back' from the first international scientific workshop focused entirely on the pathogenesis of Long COVID, convened at Yale over a span of two days. Discussion topics will include putative immunologic, virologic, and vascular mechanisms, as well as considerations specific to the central nervous system, pediatrics, and implications for future studies and clinical trials.'

Hosts
Serena Susan Spudich, MD, MA
Akiko Iwasaki, PhD
 
The Sick Times: 'Secretary Kennedy promises to support Long COVID treatment research in Senate hearing, says son is “dramatically affected”

'Kennedy’s comments in the hearing contradict Trump administration actions targeting Long COVID and COVID-19 research & support'

'Long COVID was at the top of legislators’ priority list during today’s Senate Health, Education, Labor, and Pensions (HELP) Committee hearing with Health Secretary Robert F. Kennedy Jr. Senator Bill Cassidy (R-L.A.), who chairs the HELP Committee, asked about federal health agencies’ commitment to addressing Long COVID in his first question to the Secretary.'

'In his question, Cassidy noted the need to treat previously ignored infection-associated chronic illnesses like myalgic encephalomyelitis (ME) in tandem with Long COVID.'

Kennedy told the HELP Committee, “I am 100% committed to finding treatments for Long COVID. I’m deeply involved in that, personally. I have a son who is really dramatically affected by Long COVID.
 
RFK Jr testifies in Congress 3 days ago: "My opinions about vaccines are irrelevant", and that "people should not be taking medical advice from me" :emoji_upside_down:
 
Fierce Biotech: RFK budget hearing takeaways: Kennedy defends reorg, unaware of $11B grant terminations

'Kennedy faced questions from both sides of the aisle on programs seemingly shuttered or transferred due to staff firings and the HHS restructuring effort. Sen. Bill Cassidy, R-LA, chair of the committee and a crucial 'yes' vote in Kennedy's march to become secretary, asked if HHS would continue to support long COVID research now that the office was closed.'

"Senator, I am 100% committed to finding treatments for long COVID," he replied emphatically. "I'm deeply involved in that. Personally, I have a son who is really dramatically affected by long COVID. The COVID office was cut by an executive order from the White House. But we have everybody at NIH and CDC committed to these kinds of studies, and I can tell you personally I will make sure that they happen."
 
Dakota15 said:
"Senator, I am 100% committed to finding treatments for long COVID," he replied emphatically. "I'm deeply involved in that. Personally, I have a son who is really dramatically affected by long COVID. The COVID office was cut by an executive order from the White House. But we have everybody at NIH and CDC committed to these kinds of studies, and I can tell you personally I will make sure that they happen."
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Here’s to hoping he knows how to prioritise science that can actually help..
 
WZZM: 'Biomarkers showing link between brain fog and long COVID found by Michigan scientists'

'In a collaboration with Corewell Health and the MSU College of Human Medicine, two brain biomarkers were found in long COVID sufferers'

'A challenge, Lawrence explained, is long COVID sufferers often show normal results with traditional testing, yet continue to feel cognitive symptoms. Symptoms such as brain fog, extreme fatigue and a decrease in short-term memory and attention.'

The study included 17 confirmed COVID patients, 10 with long COVID and seven who were fully recovered. It was published in PLOS One.

The study found:
  • Serum levels of nerve growth factor, a biomarker of the brain’s ability to change and adapt by forming new connections, were significantly lower in the long COVID group. This group was also more likely to have higher serum levels of interleukin (IL)-10, a marker of inflammation
"We clearly need more research," said Lawrence, "If this is clinically validated over time, then we could help identify, perhaps, who may struggle and who may recover quickly, so that we can wrap around support and treatment early."
 
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.
 
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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.

More on AER002 here
 
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