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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).

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'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.
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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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Colorado: 'Lt. Governor Dianne Primavera and National Jewish Health Host Long COVID Roundtable to Advance Care and Collaboration'

'Lt. Governor Dianne Primavera joined National Jewish Health today for a Long COVID Roundtable and clinic tour, bringing together leading researchers, health care providers, patients, and advocates from around the state to highlight progress and strengthen collaboration in treating and supporting people living with Long COVID. The event, held at the Molly Blank Conference Center on the National Jewish Health campus in Denver, featured patients sharing personal experiences alongside clinicians and researchers from across Colorado, including CU Anschutz, UCHealth, Children’s Hospital Colorado, and the Colorado School of Public Health.'

“Coloradans living with Long COVID deserve answers, care, and hope,” said Lt. Governor and Director of the Office of Saving People Money on Health Care, Dianne Primavera.
 
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As bad as I expect this RFK Jr roundtable to be, I can't really imagine that it could be worse than what we've been through the last 4 decades. It will be bullshit, just from a different angle, but the outcome is the same: failure.

Which is really saying a lot. They maximized their failure so hard that it's legally impossible to do any worse. Illegally? Easy. Legally? Nah.

I actually prefer when they are open about their complete indifference to help. It's the same outcome anyway. And here is just perfectly juxtaposes both, equal levels of failure, the reasons don't even matter.
 
Pulled out some excerpts so far of roundtable.

RFK: "We've already put $1.15 billion into NIH to solve Long COVID, and we've got literally nothing from it."

Makary: "We've spent $1.5 billion with essentially nothing to show for those dollars allocated...in the end people suffering with the condition are still suffering..."

Bhattacharya: "....we're going to find an answer...we have to acknowledge that we have not made as much as progress as the patients that we are representing, deserve...we have shifted how we are doing our investments into Long COVID research into more practical trials.."

Bhattacharya: "...we need to expand them (clinical trials)...it's going to be a collaboration, us listening to you...next time..a year from now..it won't be 20 million people suffering, it will be 20 million people with answers getting better..."

Vaughn: "Okay we see this phenomenon..but why? What's causing this? That's where the NIH comes in..."

Bhattacharya: "One of the things RECOVER-TLC...we had a formal listening session, we had submissions...we had 403 submissions on drugs....the point is, there's a lot to study...and the question for us, is how to prioritize...I don't want to wait. We have to be pragmatic."

Bhattacharya: "The 4 clinical trials we are doing in RECOVER-TLC is not enough...it's a good step forward, because we aren't waiting...we're still struggling to understand the full mechanisms..."

I know others putting notes together that will be more informative.
 
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Good to see that no one is pretending that the RECOVER initiative achieved much. And good to see this from Betsy's helpful thread:
First panelist is Hossein Estiri, a data scientist at Harvard (who was careful to disclaim his views are his own/don't represent his institution). He discussed the need for more specific definitions of Long COVID, including characterizing subtypes.
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But, there's a lot of people promoting unhelpful ideas. Bruce Patterson is there. Putrino with his CoRE resource.

As part of this Consortium initiative, RFK Jr. has commissioned the CDC to put together an online resource about Long COVID. A bit unclear what it will include; speakers have mentioned sharing clinicians treating the disease and repurposed drugs that people are trying.
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Roos from ARPA-H said the agency will soon take action on Long COVID. "In short order, after this forum, we can come up with a plan, work that through the secretary’s office, get that out..." in a timeframe of weeks, not months or years, he said.
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RFK Jr. concludes the event: "I want to thank this extraordinary pantheon of great researchers for being here... We want to work with you, I hope you will continue to communicate with us about what we should be doing better to make this cure come faster.
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Perhaps these people will stumble onto something useful, but, given the people they are listening to, it's not sounding terribly confidence inspiring.
 
The summary of the RFK Jr meeting by Betsy Ladyzhets seems a bit overly positive. I'm happy that there were some good moments.

But several others have mentioned problems, like claims that post-vaccination issues are more severe than post-infectious issues when it comes to COVID. At least once before RFK Jr has claimed that COVID vaccines have caused more deaths than COVID infections so this type of baseless comment is not that surprising.

I was not able to attend, have no idea what was actually said, just passing on what I had read.
 
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Bhattacharya: "....we're going to find an answer...we have to acknowledge that we have not made as much as progress as the patients that we are representing, deserve...we have shifted how we are doing our investments into Long COVID research into more practical trials.."
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AAAAAAAAAAAAAAAAAAAARGHHHHHHHHH!

No. NO! This is literally the wrong way to go about it. Bah, whatever. Fuck it, it was never going to achieve anything anyway.

About the only good thing is admitting the miserable failure. All of which was a choice, they were warned explicitly about it, and they did it all wrong anyway. If only it could shame some people.
 
ahimsa said:
The summary of the RFK Jr meeting by Betsy Ladyzhets seems a bit overly positive. I'm happy that there were some good moments.

But several others have mentioned problems, like claims that post-vaccination issues are more severe than post-infectious issues when it comes to COVID. At least once before RFK Jr has claimed that COVID vaccine has caused more deaths than COVID so this type of baseless comment is not that surprising.

I was not able to attend, have no idea what was actually said, just passing on what I had read.
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I don’t think she’s providing commentary, just repeating what was said. While others like Jamie were providing commentary and critique.
 
If I was from government and didn't know much about the state of research and I listened to those two sessions I would be really confused. I have people telling me the disease can be cured with stents, with Maraviroc, with rehab and anti inflammatories, auto immune drugs and peptides among others. I am being told we have reliable biomarkers that distinguish patients from Lyme, ME/CFS and mould toxicity and we have cured thousands of patients with this mix of therapies. The NIH is sat there not knowing what to do, neither does anyone else in government but if you just give all your money to these private clinicians they have the solutions.

I heard a lot of overconfidence and unevidenced claims of diagnostics and treatments and only a few of them seemed to pour proper cold water on their lack of biomarker and work towards one and their inability to really engage private drug companies without them.

That was a mess and I just can not see how that was helpful unless you already knew that some of those people were just selling snake oil in exchange for government gold. I saw no push back on any of these treatments and claims to have cured thousands of people. None of it was consistent. So in the end its just "dont know how to identify which patients, but only the "pure" long covid patients but give them right one of 400+ treatments". Not a single trial remotely says any of this works. They misrepresented the reality of the disease and what they know and can do and I found that appalling.
 
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