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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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(This morning on ESPN about Boston Celtics NBA player Kristaps Porziņģis)



at 15:50 min mark

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.’
 
Boston Herald: May 8, 2025 Boston Celtics NBA player Kristaps Porziņģis

"said his current condition is “probably” related to the viral illness that sidelined him for nine games in late February and early March. Head coach Joe Mazzulla said the same on Tuesday, acknowledging that the 7-foot-2 center has been “kind of dealing with it on and off, fighting through it, working through it, doing the best that he can” since he returned to the lineup on March 15.

“I’ve had, like, ups and downs throughout up until this point,” Porzingis said. “Just now, I had a big crash now, and my energy, my everything, hasn’t been good. But who cares? I have to look forward, and it’ll get better from this point on.”
 
Mij said:
“I’ve had, like, ups and downs throughout up until this point,” Porzingis said. “Just now, I had a big crash now, and my energy, my everything, hasn’t been good. But who cares? I have to look forward, and it’ll get better from this point on.”
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I hope he’s right that he will get better. And I hope he is aware of the possibility of getting PEM from covid.
 
They don't know what this 'mystery illness' is and hope he will better by this Saturday for Game 3 :emoji_thinking:
 
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
 
If there's a thread on this feel free to move

'CAR-T cell therapy linked to brain fog in cancer patients'

'A new Stanford Medicine-led study shows that CAR-T cell therapy causes mild cognitive impairments, independent of other cancer treatments, and that this happens via the same cellular mechanism as cognitive impairment from two other causes: chemotherapy and respiratory infections such as flu and COVID-19. The study, conducted mostly in mice, which will publish online May 12 in Cell, also identifies strategies for reversing the problem.'

'The study's lead authors are Anna Geraghty, PhD, senior staff scientist in the Monje lab, and MD/PhD student Lehi Acosta-Alvarez.'
 
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."
Click to expand...
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."
 
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