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i may be biased but I think there’s some sort of light with ARPA-H. Of course my faith in anything bureaucratic is exceedingly low, but I’m curious to see this strategic plan that will be going out to the community in a few weeks time (allegedly).

Also Sen. Young seems determined to move mountains for this, so at least there’s one high-ranking official who seems eager to stay on this (just my opinion, but I felt Sen. Sanders jumped ship when we couldn’t really really get Biden’s or Becerra’s buy-in, so even before the ‘24 election). So hopefully that doesn’t hurt
 
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Dakota15 said:
i may be biased but I think there’s some sort of light with ARPA-H. Of course my faith in anything bureaucratic is exceedingly low, but I’m curious to see this strategic plan that will be going out to the community in a few weeks time (allegedly).

Also Sen. Young seems determined to move mountains for this, so at least there’s one high-ranking official who seems eager to stay on this (just my opinion, but I felt Sen. Sanders jumped ship when we couldn’t really really get Biden’s or Becerra’s buy-in, so even before the ‘24 election). So hopefully that doesn’t hurt
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I have an indirect but real connection to Sen. Young, which could allow some direct communication with the man himself beyond the usual emails and phone-calls to his office (sorry that's so vague, basically I work with someone who is a longtime friend of his). His interest in helping does seem to be genuine, but his allegiance to the current regime is a significantly limiting factor, as are the with whom he (and, well, all of us) are forced to work with on this matter - to say nothing of the "results this quarter" mindset that seems actively hostile to long-term planning. Given all of this, what sort of non-technical information do people here feel would be most important and useful to get into his hands?

[edited for clarity and greater neutrality]
 
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DHagen said:
Given all of this, what sort of non-technical information do people here feel would be most important and useful to get into his hands?
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My opinions:

Randomly trialing treatments without good mechanistic plausibility is very likely to lead nowhere and cost enormous amounts.

Long COVID is not homogeneous and subtyping is very important.

ME/CFS literature should be built upon for ME/CFS subtype.

Basic Biomedical research is always important.

Maybe a nudge in taking a look at dara? wasf3? Decode?
 
@DHagen

Off the top of my head:

These were actions committed to at the Roundtable:

- ARPA-H LC program
- Pharma roundtable

How can patient advocates be involved in this? How can we collaborate and be centered in this strategic plan that the ARPA-H Director said would be formulated immediately?

If NiH Director is passionate about clinical trials, then being partners in that process in a fast fashion (versus RECOVER-TLC taking a year to pick 4 options) is something I’d encourage. Or having the top LC/ME research names leading that effort, in a public way, versus the secrecy that surrounds nearly every decision.

Also agree on mechanistic studies being so important, but I don’t really know the solutions to that right now. A part of me thinks just fund the UCSF team / VIPER study, Ron Davis, etc and just let them do their work, but that probably sounds too simple in theory.
 
Yann04 said:
My opinions:

Randomly trialing treatments without good mechanistic plausibility is very likely to lead nowhere and cost enormous amounts.

Long COVID is not homogeneous and subtyping is very important.

ME/CFS literature should be built upon for ME/CFS subtype.

Basic Biomedical research is always important.

Maybe a nudge in taking a look at dara? wasf3? Decode?
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Thank you!

I fear, unfortunately, that most of these are precisely the points that those involved least want to hear - they do not want to spend money on anything that isn't going to bring results by the next election, they do not want Long COVID to have anything to do with ME/CFS (which they either don't believe in or which they see, quite correctly, as an indication of how intractable the problem really is, a fact they don't want to face), and they are pretty allergic to complexity of any sort. Of course, this has been true everywhere for a long time, so I suppose the matter is how to present the advice in a manner that won't result in immediate dismissal...

Dara (perhaps expanding this to the larger class of drugs / potential mechanism of action) seems like a real possibility; at the very least, it's the type of thing they want to hear. I don't know much about the funding structure wrt the NIH, but getting the name(s) in his ear in case an opportunity comes up absolutely seems worthwhile. It probably won't be much, I will see what I can do.
 
DHagen said:
Thank you!

I fear, unfortunately, that most of these are precisely the points that those involved least want to hear - they do not want to spend money on anything that isn't going to bring results by the next election, they do not want Long COVID to have anything to do with ME/CFS (which they either don't believe in or which they see, quite correctly, as an indication of how intractable the problem really is, a fact they don't want to face), and they are pretty allergic to complexity of any sort. Of course, this has been true everywhere for a long time, so I suppose the matter is how to present the advice in a manner that won't result in immediate dismissal...

Dara (perhaps expanding this to the larger class of drugs / potential mechanism of action) seems like a real possibility; at the very least, it's the type of thing they want to hear. I don't know much about the funding structure wrt the NIH, but getting the name(s) in his ear in case an opportunity comes up absolutely seems worthwhile. It probably won't be much, I will see what I can do.
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Thank you for planning to make this effort. Hopefully it might be a nudge that changes things. Grateful to you for trying in any case.
 
Dakota15 said:
Also agree on mechanistic studies being so important, but I don’t really know the solutions to that right now. A part of me thinks just fund the UCSF team / VIPER study, Ron Davis, etc and just let them do their work, but that probably sounds too simple in theory.
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I suspect that passing on specific names (of drugs, researchers, and programs) may have the best chance of "sticking" - so, as long as the decision makers can find a way to claim credit, I think the simpler the better, maybe? It would also make it easier to pass on to constituents and other pwME who could reinforce the message.
 
DHagen said:
I suspect that passing on specific names (of drugs, researchers, and programs) may have the best chance of "sticking" - so, as long as the decision makers can find a way to claim credit, I think the simpler the better, maybe? It would also make it easier to pass on to constituents and other pwME who could reinforce the message.
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Targeting CD38 or Dara. Either would do. People are getting nowhere because they have no leads. Dara is a credible lead.
 
Passing along.

'The University of Florida in United States invites applications for vacant Postdoctoral Positions’ (posted 7/15/25)

'An NIH-funded postdoctoral position is available in the Fatigue and Underlying Neurobiology (FUN) Lab, directed by Dr. Agostina Casamento-Moran within the Department of Applied Physiology and Kinesiology at the University of Florida. The successful candidate will join a dynamic, interdisciplinary team investigating the neurobiological mechanisms of fatigue and post-exertional malaise in Long COVID, ME/CFS, and other syndromes.’

Separate link here.
 
Apparently RFK Jr will announce the "cause of autism" today

Spoiler - he doesn't know the cause of autism

He's gonna make something up to push his agenda
 
Mij said:
Apparently RFK Jr will announce the "cause of autism" today

Spoiler - he doesn't know the cause of autism

He's gonna make something up to push his agenda
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Tylenol. And as ridiculous as it is, and it 100% is, it's not more ridiculous than half the stuff we hear being said about us and chronic illness in general.

It's not even the most ridiculous thing said about autism by actual physicians who wrote it down in a book thinking it was smart, not even by a long shot. Just as false, but the ridiculous factor is just not there.
 
BBC: 'Trump links pain reliever Tylenol to autism - but many experts are sceptical'

'Doctors in the US will soon be advised not to prescribe the pain reliever Tylenol to pregnant women, US President Donald Trump said, citing a disputed link between the drug and autism.'

'During the announcement on Monday, Kennedy said the Food and Drug Administration (FDA) will issue a physicians notice about what he said is the potential risk of taking Tylenol during pregnancy.

He said the FDA will also begin the process of initiating a safety label change on the medication and launch a public health campaign to spread awareness.'

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'In August, a review of research led by the dean of Harvard University's Chan School of Public Health found that children may be more likely to develop autism and other neurodevelopmental disorders when exposed to Tylenol during pregnancy.

Researchers argued some steps should be taken to limit use of the drug, but said it was still important for treating maternal fever and pain, which can also have negative effects for children.

But another study, published in 2024, found no relationship between exposure to Tylenol and autism.

It was conducted by looking at a population sample of 2.4 million children born in Sweden between 1995 to 2019. Around 7.5% of them were exposed to acetaminophen during pregnancy.

By comparing autism rates between those exposed versus those who were not, as well as comparing siblings who shared genetics, the study concluded that there was no increased risk of autism, ADHD or intellectual disability that can be definitively linked to acetaminophen.'

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'Kennedy added that the FDA will soon approve Leucovorin, a decades-old drug traditionally used to protect cancer patients against toxicity from chemotherapy, to be used as treatment for children with autism.

FDA Commissioner Marty Makary said the approval will be based on research that he said suggests the drug, which is a form of vitamin B, may help children with autism who are deficient in folate improve their verbal communication.'
 
Eleanor said:
"many experts are sceptical" is a pathetically poor misrepresentation of the facts.
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Yikes, what a bad headline! This headline from CNN is a little better:

Trump links autism to acetaminophen use during pregnancy, despite decades of evidence it’s safe

Acetaminophen is the generic name for the drug in the USA, same thing as paracetamol.

EDIT: The article has this note about risk of harm from not treating fevers while pregnant. Taking ibuprofen or aspirin is not advised.
Other common pain relief options like ibuprofen or regular-dose aspirin can increase the risk of serious complications during pregnancy. Not treating a fever can also be dangerous for both the fetus and the pregnant person.
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EDIT #2: This article from KFF Health News has a lot more detail:

‘Sick to My Stomach’: Trump Distorts Facts on Autism, Tylenol, and Vaccines, Scientists Say
 
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