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

Francis Collins has a New Role
See Stat News Article link in thread—seems like Dr. Ebright has an opinion on this.

[Tweet by Richard H. Ebright that is highly critical of Francis Collins and his appointment as advisor to the US President]

Stat article:
https://www.statnews.com/2022/02/16...split-the-role-of-his-ousted-science-adviser/

 

Wow.

This seems bad. Is that wrong?

 

From what I can tell, the previous Director of the Office of Science and Technology Policy (OSTP), Eric Lander, recently left the office after only about six months on the job. He had been accused by more than a dozen persons of having "bullied" and "demeaned" his subordinates.

In the past, the Director of OSTP has also been informally known as the "President's Science Advisor."

So it appears that the Deputy Director of OSTP, Dr. Alondra Nelson, whose background seems to be in social science, will now head the OSTP, but she will not also be the Science Advisor to the President, a post which was made into a Cabinet level position when Lander was appointed in 2021.

Instead, it appears that Dr. Francis Collins will be the new Science Advisor to the President, although I'm not sure how long he intends to serve (he's 71). I would assume that both Collins and Nelson will be members of Biden's Cabinet.

Collins is at least familiar with ME/CFS. He spoke about increasing research on it years prior to Covid. I'm not certain, but he may have had a hand in the genesis of the IOM (now The National Academy of Medicine) Report published in 2015. Anyway, it might not be a bad thing to have someone who knows something about ME/CFS sitting on Biden's Cabinet.

 

Walter Koroshetz has tweeted about the grant:

 

He might also help to merge ME/CFS with Long covid i.e. currently the "big bucks" Government funding is ring fenced for long covid (ME/CFS is out) so Collins might help in terms of inclusion of ME/CFS in the long covid funding.
I think Solve have been trying to lobby to get ME/CFS included in the [$ billions?] long covid funding.

 

Collins and Biden are liberal Catholics. I know they get flak for supporting women's rights.

 

Translation: Here. Have a pittance. Be grateful you get THIS [paltry] amount. Now be quiet.
Totally insufficient amount to truly make a difference in the lives of PwME especially with the rapidly increasing #s of PwME post-acute COVID.

 

I'd like to read this, but can't find the link or referenced thread.

 

If Collins had wanted to do something about ME/CFS would he not have done more in the past? Has anything changed? I hope so.

 

Walt Koroshetz is one of the least impressive and imperious figures in the American public health apparatus. I’ve witnessed him discuss ME with an almost childlike sense of bemusement. I feel differently about Avi Nath and some of his subordinates. I believe they’re more erudite and principled when it comes to tackling the disease. Koroshetz is largely an administrator. A glorified camp counselor in NINDS.

 

Has anyone watched this video? The section on the measurements taken before and after an exercise challenge in particular?

Cytokines - no difference between before and after exercise

They exposed B cells to various immune stimulators and measured cytokine responses. No difference between before and after.

Big difference between cases and controls with cases being much more highly reactive to the stimulators even before exercise.

Also a big difference between male and female in both cases and controls (which may only tell us that male and female immune systems are inherently different?).

Female age also showed a similar pattern to the male/female differences with older females' B cells being the most reactive and they found correlations with estrogen levels.​

Citric acid - difference after exercise

After exercise, citric acid increased in patients but decreased in controls. The interpretation was that when healthy people exercise, more citric acid is used up in the TCA cycle to produce the necessary energy. But when pwME exercise there's some sort of block in the cycle so the citric acid accumulates rather than being used to make energy. Has this block shown up in other studies or is this a new finding (assuming it holds up)?​

 

How much power did he actually have to do something? I doubt all the people in the rest of the NIH were very invigorated to do things about ME/CFS, and congress was mostly placid. In those circumstances it's unclear to me whether he was actually in a position to do much more than he did.

I've struggled to find information about the powers the director has, but this article seems to suggest that the office of the director just has control of 5% of the NIH budget, and that's probably subject to practical and other restrictions too: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(07)60295-5/fulltext

 

Moved from this thread

Can't see a date, but I think this presentation by NIH of dr. Avindra Nath and his work is new.

NIH Viruses on the Brain

quote:
When it became apparent that many COVID patients continue experiencing symptoms like fatigue and difficulty concentrating long after contracting the virus — a syndrome now known as ‘long-COVID’ — it reminded him of his experiences working with patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Dr. Nath’s research has suggested that ME/CFS might be a residual effect of viral infections, and these observations prompted him, early in the COVID-19 pandemic, to urge his peers not to discount the possibility that SARS-CoV-2 could wreak havoc on the brain.

Since then, Dr. Nath’s research has only bolstered that warning. His team’s studies have found significant damage to blood vessels and neurons in the brains of deceased COVID-19 patients, hinting that long-COVID may be the result of a virus-induced assault on the brain with consequences that linger after the body has successfully fought off the virus.

“The same concepts repeatedly come full-circle,” he says.

Discoveries like those being made in Dr. Nath’s lab promise to dramatically alter how the long-term effects of viral infections are treated. As patients with ME/CFS have long known, when doctors cannot objectively measure symptoms, they can be quick to dismiss those symptoms entirely. Yet this narrow-minded approach can lead to the neglect of large groups of patients, from those with HIV-induced neurological problems to people living with ME/CFS and, most recently, individuals suffering from long-COVID. After a nearly 40-year career exploring consequences of viruses that many of his peers have long ignored, Dr. Nath has come to appreciate the unique struggles of such patients and the importance of not repeating the mistakes of the past.

“You have to be very careful,” he says. “People who had COVID-19, this serious respiratory illness, are also complaining of neurological symptoms, and these symptoms may actually be persistent. We have to pay attention to this and not ignore it.”

 

Ya think?

It is a distressing exercise in deja vu to see different talking heads from the medical community, and in particular the NIH, speak about the same shit, year after year, like it's a Eureka moment.

 

"NIH’s next ME/CFS Telebriefing will be held on March 28, 2022 from 3:00 – 4:00 pm ET. The telebriefing will include updates from NIH on ME/CFS-related research efforts and a scientific presentation by Benjamin H. Natelson, M.D., Professor of Neurology at Icahn School of Medicine at Mount Sinai, on his NIH-funded research on ME/CFS.

We invite you to submit questions ahead of the telebriefing. Please submit them to NIHME-CFSWorkingG@ninds.nih.gov by close of business (COB) Thursday, March 17, 2022. We will also answer questions that are submitted during the telebriefing in the Zoom Q&A window. We regret that we may not be able to respond during the meeting to all questions that we receive, but we will try to answer as many as possible in the time allotted.

Please click the link below to join the webinar:

https://nih.zoomgov.com/j/1605311243"

 

NIH has started an ME/CFS newsletter. From an email:

The newsletter ("VOLUME 1: ISSUE 1 MARCH 11, 2022") is attached (PDF file).