USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

Amw66 said:
Part of the quote thread


Worth saying my impressions at the end:

There is still a STRONG push for behavioral studies from high w/in NIH. Eye-rolling from a scientific stance; gut-roiling from an ethical one. And no, it doesn't matter how their language shifts, it's quite clear.
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Since I misunderstood when I initially read your post, I want to clarify that you are quoting Jamie Selzer.
 
University of Tennessee: 'Research Team Receives $1.5 Million to Study Neurological Disorders Linked to Long COVID'

'The National Institute of Mental Health has awarded a significant grant of $1.5M to Jianyang Du, PhD, of the University of Tennessee Health Science Center, for a research study aimed at uncovering the cellular and molecular mechanisms that lead to neurological disorders caused by long COVID-19.'

'Dr. Du’s team has developed a mouse model that mimics SARS-CoV-2 infection, allowing researchers to observe changes in behavior two weeks after infection. Remarkably, they found the virus’s genetic material in the brain just four days after infection, indicating direct effects on brain function. They also detected viral components specifically in neurons, alongside signs of immune system activation in the brain.'

'By shedding light on these complex interactions, this research could lead to effective therapeutic strategies to combat the neurological challenges posed by COVID.'

Write-up from Bioengineer.org on the grant here.
 
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Eleanor said:
Or perhaps it suggests that people who are ill may have particular pressures influencing their choices in lab-based tasks that have no relevance to their real-world activities, compared to how healthy people might approach the same task under the experimenter's eye.

(edited to add: I would be willing to bet that actually there was a spread of behaviour across groups, but that this has been mushed down into "LC do one thing, HC do the other" because soundbites sell.)
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Unless I missed something, the NIH ME/CFS one was performed one time only, and it was barely significant. Most like it's random so you'd expect to see some regression to the norm. This is why repeating the same experiment is important, but they went ahead and invented a whole-ass concept out of nothing. In science people do that, calibrate their experiments. But this type of test isn't meant to test for something, it's just a gotcha used to argue a prior conclusion.

This just makes the decision to make this the defining finding of the study, of the whole program really, so much worse and incompetent.
 
https://twitter.com/user/status/1880349664974635512


NIH X post: "NIH News Week of January 13th: https://bit.ly/40CwGoH

#MECFS #COVID #pregnancy #fetus #ContactLenses #vision
#ScienceNews #research #news #science #NewScience
#ScienceAdvancements #NIH"

From NIH YouTube Link:

News from the week of January 13:

1. NIH-funded study finds cases of ME/CFS increase following SARS-CoV-2. https://bit.ly/40sxR9g

2. Excess weight gain in first trimester associated with fetal fat accumulation. https://bit.ly/4g1Sj6C

3. Contact lenses used to slow nearsightedness in youth have a lasting effect. https://bit.ly/4ak27rl
 
Thanks @forestglip for that very useful summary of the webinar.

Regarding that Long Covid study of risk taking in a contrived setting, there are a number of explanations that make more sense than people with Long Covid having some inherent personality flaw.

It could be that the people with Long Covid needed to take breaks from the button pushing, or whatever they were required to do. So, that would increase the tendency to take options that have a chance of a low energy input.

It could be that the Long Covid people who made the effort to participate in the research study are special in some way, not reflective of Long Covid population in general. For example, they may well be willing to take action and risk deterioration in order to help find out what is wrong with them.

It could be that the behaviour of the Long Covid people was influenced by being in a study more than the controls. Maybe they cared more about the study and were trying to do well, whereas the controls were more 'meh, whatever'.

It could have just been chance.

That's before we consider possible intended or unintended bias, perhaps differences in the demographics of the two cohorts, priming the participants in different ways, or making decisions to exclude an outlier or two that moves averages in unhelpful ways.​

I'm not clear on this, and to be honest, not that motivated to find out, but it feels a though the result here was sort of opposite to what Walitt found in the ME/CFS study? As in, the ME/CFS people were reported as tending to take the low risk option more often, whereas the LC people were reported as tending to take the high risk option more often. I wonder what negative personality spin would have been applied if the reported outcomes in this study had been reversed? 'LC people too frightened to take risks to achieve good outcomes?'

From what has been reported here, it seems a very unproductive use of research dollars. Interesting about the comment of aligning research with the Roadmap research priorities. I can't imagine effort preference research was on the list; I can't imagine Vicky being thrilled about that effort research.
 
Hutan said:
Interesting about the comment of aligning research with the Roadmap research priorities. I can't imagine effort preference research was on the list; I can't imagine Vicky being thrilled about that effort research.
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And the Research Roadmap webinar from a year ago had about 30 hours of presentations from dozens(?) of researchers. There must have been some more fleshed out research from some of these groups since then that could have been included. It felt really out of place to include, in what otherwise was a high level overview of NIH ME/CFS, just one group that basically presented two preliminary unreplicated findings.
 
2/18/25, NINDS: 'Reflecting on 2024: Advancing Neuroscience Research to Improve Neurological Health'

'Each year there are far too many advances to cover in detail, but I have selected a number of highlights from 2024 that you can peruse above.'

(2nd slide under header)

'Understanding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome'

'A team of 75 scientists from 15 research centers collaborated on a groundbreaking study to deeply phenotype post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (PI-ME/CFS). They compared patients with PI-ME/CFS to healthy individuals and found that the syndrome is linked to changes in brain and immune function that disrupt how the brain decides how to exert effort—not just physical or mental exhaustion. The study revealed sex-based differences in gene expression profiles in muscle, immune cell populations, and metabolite markers. These findings provide crucial insights into the biology of PI-ME/CFS and highlight the complex ways it affects the body. This research could lead to better treatments for this complex and debilitating condition.'

Scientific progress to improve the lives of those living with neurological disorders

'The National Advisory Neurological Disorders and Stroke (NANDS) Council and its expert working groups help us identify and make progress in strategic areas that support the mission of NINDS. Last May, a new research roadmap for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was presented to the NANDS Council. This ME/CFS Research Roadmap identifies research priorities to move the field toward translational studies and clinical trials for this disease that has so far defied understanding and may be increasing due to the high risk of ME/CFS in individuals who were infected with SARS-CoV-2, the virus that causes COVID-19.'
 
Underneath the header there are < and > icons to the left and right of the image. Click > once and you should see intramural study pictures and write-up in box. You can scroll the box for full write-up.
 
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Yes.

The article at the link in the tweet notes
A vanguard study Layec conducted at the University of Massachusetts has provided promising results:
  • An eight-week, home-based lower-body heat therapy trial showed clinically significant improvements in physical function for older adults with long COVID.

  • Early findings suggest potential cardiovascular benefits, which are now being further investigated.

  • The research aims to expand treatment options for individuals who cannot engage in traditional exercise-based rehabilitation.
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The article gives no link to the preliminary study and a feeble effort at finding it yielded nothing. It's quite odd. Layec's page does not mention a trial of heat therapy in older adults with Long COVID.

$3.2 million in NIH funding is a big deal.

There's this that seems to be describing the study:
https://cic-apps.datascience.columbia.edu/grants/15203?keyword=coronavirus

One promising approach that offers numerous health benefits is whole-body heat therapy. Whether this intervention is effective when confined to the lower body and well tolerated at home in people with PASC is, however, unknown. The overall objective of this project is to determine the safety, tolerability, and efficacy of home-based lower body heat therapy in late middle-age and older adults with PASC.

Selected participants will be randomly allocated to perform 8 weeks of home-based lower body heat therapy (HT, skin temperature 38-40˚C, 40-55 min, 5 per week at home), a thermoneutral condition (CT, skin temperature 33˚C, same duration and frequency), or a walking intervention using wearable technology (WT, 1,500-3,000 additional steps from baseline, 3-5 days per week).

We will compare the 6 min walking distance, the short physical performance battery test score, gait speed, cognitive function, incidence of adverse events, and participant’s adherence to intervention between groups.
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It sounds pretty bad, including the choice of outcomes.
 
Sharing from Bhattacharya nomination hearing today.

Rep. Andy Kim (D-NJ): Do you have a view on Long COVID?"

JB: Senator, i think it's a problem that affects millions of Americans, that we need answers."

Kim: "Is this something worth NIH funding?

JB: "Yes."

Kim: "You had a quote before that was concerning - you said, quote, there are more pressing health needs for the $1.1 billion that the NIH will spend on Long COVID. Is that something you still stand by then?"

JB: "Senator, I think that the funds that have been spent to date on Long COVID have not provided answers to the millions of patients. I think that they deserve answers. We can do a better job with the funds we spend at the NIH, so that it actually produces better diagnostics, better cures, better prevention."

https://twitter.com/user/status/1897324289273328124
 
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