MAY 6, 2024 - CDC ME/CFS Stakeholder Engagement Conference call

[Dakota15]

So awesome about Jaime and this recognition!

Speaking of Nath, and not sure if this warrants a different thread, but thought I'd ask and mods feel free to move where applicable.

On Monday, May 6th is the CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

We know one of the segments is: “Deep Phenotyping of Post-Infection Syndromes and the Way Forward” with Brian T. Walitt, M.D., M.P.H. and Avindra Nath, M.D. | Question and Answer (Q&A)

I know or sense they may just cherry-pick certain questions they prefer to take, but assuming they’ll answer these live Q&A’s on Monday, do any here have recommendations for highest priority questions to send in? (I know we could take up a whole week sending in all of our deep concerns, but just taking inventory from any here what is best for them to try to answer or the best path forward)

 

[Mary]

https://www.cdc.gov/me-cfs/programs/meetings.html

This link has all the info about how to participate.

 

[Rufous McKinney]

do any here have recommendations for highest priority questions to send in?

what is best for them to try to answer or the best path forward)

An important opportunity to ask a really well articulated question. Which is HARD to formulate.

I think it might be a mistake to dwell on the effort - preference component, even tho we want to get on their case about how poorly that was articulated.

Has Nath ever spoken directly about effort preference? Seems like he isn't very focused on it, but Walitt is loving it.

the highest priority topic seems like its DIAGOSTICS and TREATMENTs moving forward somehow.

Is any funding currently in place to pursue ANY of the possible treatment strategies? If not, who exactly is pursuing getting follow up work accomplished?

 

[Dakota15]

TY @Rufous McKinney.

This is my planned question:

"Dr. Nath, last week you recommended the need for a platform trial where multiple drugs can be studied simultaneously as a next step. Is any funding currently in place to pursue this aspiration? If not, how can NINDS encourage and solicit grant applications on this proposed plan to help make this a reality? What are the next steps needed to accomplish this goal?"

 

[Rufous McKinney]

This is my planned question:

excellent! Great Question.....

 

[Dakota15]

Sharing Nath's reply:

“Platform trials is the way to go. A number of diseases are already looking into it. One of the diseases I study is ALS. There is an ongoing platform study in ALS. One can learn from that experience. So, Merit Cudkowicz at Harvard is the PI on that. It’s a multi-centered study. I think for platform studies you need large sample sizes, so you’re going to need multiple sites to enroll patients.

They are very expensive. Pharmaceutical companies really fund these things. Federal agencies don’t have that a kind of bandwidth. Most of the funding for clinical trials really come from pharmaceutical companies because they have the deep pockets to do these things, their budget is 10x that of NIH or more. I think what you need, is probably some kind of advisory committee that can go and design these things, try to raise funds from pharmaceutical companies to conduct these studies and learn from the ALS platform study. That is what I would suggest.”

https://twitter.com/i/web/status/1787575166605672822

 

[Rufous McKinney]

is probably some kind of advisory committee that can go and design these things, try to raise funds from pharmaceutical companies to conduct these studies and learn from the ALS platform study.

well, that is an answer. Maybe somebody can further translate it. Maybe it's a meaningful answer.

 

[Dakota15]

Also for those curious, I believe this is the ALS platform trial that Nath is referencing to mimic with ME.

 

[gbells]

So awesome about Jaime and this recognition!

Speaking of Nath, and not sure if this warrants a different thread, but thought I'd ask and mods feel free to move where applicable.

On Monday, May 6th is the CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

We know one of the segments is: “Deep Phenotyping of Post-Infection Syndromes and the Way Forward” with Brian T. Walitt, M.D., M.P.H. and Avindra Nath, M.D. | Question and Answer (Q&A)

I know or sense they may just cherry-pick certain questions they prefer to take, but assuming they’ll answer these live Q&A’s on Monday, do any here have recommendations for highest priority questions to send in? (I know we could take up a whole week sending in all of our deep concerns, but just taking inventory from any here what is best for them to try to answer or the best path forward)

Here's a link of their previous meetings.

https://www.cdc.gov/me-cfs/programs/meetings.html

It's encouraging that they are working with Bhupesh Prusty PhD.
Their previous meeting had Dr. Prusty discussing his theory that fibrinogen-antibody complexes are triggering the mitochondrial fragmentation as a protective response. Fibrinogen was highest in long covid + ME.
He thinks this could be the hidden factor Ron Davis found in serum.

 

[Dakota15]

Just wanted to share this reply from NIH ME/CFS Working Group below:

"You asked what biomarker targets for potential therapies the ME/CFS Working Group or Dr. Avindra Nath would recommend in order to get pharmaceutical companies to fund platform trials for ME/CFS. Dr. Nath provided input on this response and suggested that you review the slides for his closing remarks during the May 2nd Symposium, which list potential targets. You will find Dr. Nath’s summary and closing remarks beginning at timestamp 5:24:21 at the following NIH Videocast webpage: https://videocast.nih.gov/watch=54675.

We hope this information is helpful.

Office of Neuroscience Communications and Engagement
National Institute of Neurological Disorders and Stroke
on behalf of the Trans-NIH ME/CFS”