News from the USA, United States of America

'It also renews attention to post-viral illnesses such as ME/CFS,...'​

I really wish the viral part of that description was dropped from the lexicon. We don't know it is viral. Much safer to say post-infection.

'Personalized treatment, tailored to individual symptoms and immune markers will be necessary.'​

I remain very far from convinced about the assertion that management or treatment for ME/CFS needs to be personalised to any great degree, any more than setting a broken forearm needs to be. Of course every single case of a broken forearm is strictly speaking not exactly the same. But the basic treatment protocol is, and the differences are minor tweaks.

I think saying it requires 'personalised' approach is just dead-end, an excuse to admit they have no idea what they are dealing with, and no idea how to deal with it.

If the personalised approach is so effective then where is the evidence for it in robust studies?
 
Here's some good news:

Trump Admin Throws Up Hands, Pledges to Restore HHS Websites
Medpage Today said:
The Trump administration has thrown in the towel in the fight over federal public health webpages that were removed earlier this year.

It settled a lawsuit brought by AcademyHealth and eight other public health and medical organizations, promising to restore scores of pages from the CDC, NIH, and FDA that were removed to the way they appeared on Jan. 29, 2025.

"They said, 'We're not even going to fight this. We're just going to put everything back,'" Aaron Carroll, MD, MS, president and CEO of AcademyHealth, told MedPage Today.

Restored pages include the Youth Risk Behavior Surveillance System (YRBSS), the Pregnancy Risk Assessment Monitoring System (PRAMS), datasets on HIV care, and information on opioid use disorder in women.
Click to expand...
 
I was listening to the Surgeon General of Florida this morning on CNN, and his explanation for his vaccine mandate tells me that he has lived his life in a bubble. Just clueless. Allowing parents to make their own decisions on whether their child should get vaccinated assuming they understand how vaccines work is just irresponsible. It's not about a parent being concerned about 'what their child puts in their body", it's about years of research and studies that prove vaccines work. Is the Surgeon General aware that some parents rely on social media for their medical decisions/advice?
 
Orange County Business Journal: 'COVID Expert to Chair TechImmune'

'Gavin Herbert is winning converts to his latest venture, which is trying to solve Long Covid''

'The company, which began in 2021, is expecting to raise up to $50 million in the coming two rounds to fund clinical trials that could begin next year, Young said.'

'TechImmune is developing a T-cell–based immunotherapy to address the root cause of Long Covid by clearing persistent SARS-CoV-2 reservoirs in the body and restoring functional anti-viral immunity. Its lab tests on mice have shown positive results. If clinical tests are successful, it will be the first approved disease-modifying treatment for Long Covid.'

“We expect to have that data wrapped up by the end of the year” Ulmer said about the animal model study.

'..Ulmer said that “with success,” the company will enter development in early 2026 toward an investigational new drug (IND) clinical trial.'
 
9/10/25, The Cribsiders Pediatric Podcast: 'Long Story Short'

'In this episode, we’re joined by Dr. Peter Rowe from Johns Hopkins to unpack the recognition, diagnosis and treatment of Long COVID in pediatric settings.'

Host: "I think one of the things that Long COVID has, or the COVID pandemic has done, it's made people realize, okay you can get this kind of problem - Long COVID or ME/CFS, after SARS-CoV-2 infection - maybe these people that we were misjudging pre- pandemic actually were sick - and much sicker than we thought..."

Thread on Dr Peter Rowe here
 
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9/10/25: 'David Tuller Interview with Ian Lipkin'

Covers Columbia University's Center for Infection and Immunity (CII) recent ME paper on heightened innate immunity

Lipkin: "So our goal is to try to get to precision medicine with ME/CFS. And I think we're going to get there by using various tools that can manipulate immune responses and can interfere with certain aspects of cell cycle. Is it going to be complicated? Yes...Is it something that's 5 years away? I think it's going to be less than that. I think we're getting close."

"There's no question that there's a reduced, that the threshold for triggering inflammation, with ME/CFS - is lower than the threshold in people who are healthy. So anything can set this off."

"And our work here clearly shows that the immune system is dysregulated. And if you tie that together with the dysbiosis and all the other things, you can begin to chip away at how you might make people feel better."

"I think the most important outcome for patients with ME/CFS is that as a result of Long COVID, people realize that you can develop a chronic debilitating illness with many features of ME/CFS after an infection. It has given it a legitimacy."

Thread on Ian Lipkin here
 
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10/31/25: University of Michigan, '2025 IACC Long Covid Case Competition'

'A student-led initiative at the University of Michigan aiming to raise awareness and drive industry engagement around infection-associated chronic conditions (IACC) like Long Covid, Postural Orthostatic Tachycardia Syndrome (POTS), and Myalgic Encephalomyelitis Chronic Fatigue Syndrome (ME/CFS) through real-world business solutions.'

The event is open to the public, attendance can be virtual or in person.

Competitor link: https://www.bus.umich.edu/Conferences/IACC-Case-Competition-at-Michigan-Ross/Default.aspx

Attendance link: https://www.bus.umich.edu/Conferenc...-Michigan-Ross/Page.aspx?conf_menu_ord=826724

Their tag line: 'Many patients with these illnesses are too sick to advocate for themselves, be their voice!'
 
Dakota15 said:
Sharing some local updates with the Long COVID Program at Minnesota Department of Health (MDH).

----

'Do You or Someone You Know Want to Help Shape MN’s Response to Post-Viral Chronic Conditions such as Long COVID and ME/CFS?'

Hearing from those directly affected is essential. Over the coming months, there will be opportunities to participate in MDH focus groups, design work sessions, and surveys.'

'The Minnesota Department of Health (MDH) is inviting people with lived experience of long COVID or other post-viral chronic conditions, such as ME/CFS and POTS, to participate in the Minnesota long COVID statewide planning activities. Over the next several months there will be opportunities to provide your insights and experiences. Your input will help shape planning and recommendations to address long COVID and related conditions.’

Sign up & form is here.
Click to expand...
MDH is starting their focus groups this week that includes leadership of the state health department & those with lived experience of LC & ME "with the purpose of this opportunity to help inform statewide recommendations to better support people with post-viral chronic conditions." Hopefully just the first state health department of many to conduct these.

If any here have specific recommendations or ideas that feel should be most prioritized for consideration of statewide policy or planning, open to hearing any (whether in a direct message or to the group here). Still learning the state-level ropes and just wanted to take collective input too, since the barriers we all experience are all too common everywhere. My focus group meets next week (Sept. 22nd). (edited)

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