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

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.
 
Last edited:
Forbin said:
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.
Click to expand...

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.
 
#MEAction have written about the latest grant funding:

NIH Falls Short
NO INCREASE IN FUNDING IN LATEST PLAN FOR ME/CFS COLLABORATIVE RESEARCH CENTERS
The National Institutes of Health (NIH) has announced their intent to extend the ME/CFS Collaborative Research Center (CRC) program, first launched in 2017, beyond its initial 5-year lifetime. They have issued a $7.1M annual funding opportunity for the ME/CFS CRCs, and another $500K annual funding opportunity for a supporting Data Management and Coordinating Center (DMCC). These awards will also run for a 5-year term. Previous research center awardees will need to reapply along with any new applicants to compete for this next round of CRC funding.

While it is good news that funding for ME/CFS research centers will continue, unfortunately, the bad news is that NIH is not increasing the amount of funding available to CRCs beyond the previous award levels set in 2017. The plateaued funding levels also means the total number of research centers studying ME/CFS is unlikely to increase. Moreover, it appears there will be at least a 7-month funding gap between when the prior awards end (August 2022) and the earliest the new awards will begin (April 2023). That could mean currently funded research centers will have to find alternative ways to cover continued research and staff expenses during this funding gap.
...
Click to expand...
more at link:
https://www.meaction.net/2022/02/17...ce-again/?mc_cid=88af56a2a5&mc_eid=83ddbd3a71
 
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.
 
Kalliope said:
MECFSnet Webinar - Columbia University, Center for Solutions for MECFS

Description:
In this webinar, Dr. Ian Lipkin and colleagues at the NIH-funded Collaborative Research Center at Columbia University provide an update on their research progress.



Tweet from Center for Solutions for ME/CFS:
Next in our @NIH #MECFS Collaborative Research Network Webinar series is Ian Lipkin and the research team @Columbia_CII @ColumbiaMSPH discussing the latest finding from the work at the Center for Solutions for MECFS.
Click to expand...

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)?​
 
Ariel said:
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.
Click to expand...
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.”
 
Last edited by a moderator:
Link to an NIH article abut Avindra Nath - commenting about post-viral symptoms, saying these need to be studied and given credence
Is Long Covid a type of ME/CFS? Discussion thread
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.
Click to expand...
(quote added)
 
Last edited:
Thanks @Kalliope, that's an interesting article. I'm very glad we have Nath working on ME/CFS.
Dr. Nath’s team has discovered that a protein produced by HIV, called Tat, is present in the brains of HIV-positive patients even when antiretrovial therapy has reduced the amount of virus in their blood to undetectable levels. He believes that HIV hides from antiretroviral drugs inside brain cells, remaining unscathed by the therapy while continuing to release Tat, which causes brain inflammation and kills neurons.

“Even if antiretroviral therapies cross the blood-brain barrier, they cannot prevent HIV proteins from being made inside infected brain cells,” Dr. Nath explains. “We think that, if you want to control HIV completely, you have to control the Tat protein.”
Click to expand...
 
Kalliope said:
“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.”
Click to expand...
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:
NIH mail said:
Please find attached the first issue of the NIH ME/CFS Newsletter, providing updates on NIH’s ME/CFS-related research activities. The Trans-NIH ME/CFS Working Group will use this newsletter to provide updates and information to ME/CFS stakeholders. We welcome suggestions for information and updates that you would like to see in this newsletter. Please send your suggestions to: NIHME-CFSWorkingG@ninds.nih.gov

Regards,

The Trans-NIH ME/CFS Working Group
Click to expand...

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

Attachments

You must log in or register to reply here.
Back
Top Bottom