2024: USA NIH NINDS ME/CFS Research Roadmap - input on research priorities sought by 11 March 2024

Forgot to add "Gut-Immune-Metabolic Interplay in ME/CFS - Armin Alaedini, PhD; Columbia University"
Some of Armin's immunological results seemed to be statistically significant & counterintuitive (response leaky gut?).
Overall I thought there was a lot more:
1) evidence to work from [e.g. immunological data presented by Hanson & Armin]; and
2) tools to apply - high end immunology (single cell work); and Raman spectroscopy. Big gaps in metabolomics too.

 

Idiot - I missed the deadline!

"
Thank you for your feedback, ---. IdeaScale closed at 5:00 pm ET yesterday, so your comments were not added to IdeaScale. They will be included in the information that goes to the Working Group of Council as they finalize the report for the NINDS leadership and Advisory Council.


Thank you for taking the time to provide your feedback!

Best wishes,

Vicky"

 

Oh, I think I understand, my mistake - original deadline was Friday 5 pm ET/10pm GMT - your clocks changed over the weekend, so the new deadline was Monday 5 pm ET i.e. 9pm GMT.

 

I too received the email

"Thank you for your feedback, ...... IdeaScale closed at 5:00 pm ET yesterday, so your comments were not added to IdeaScale. They will be included in the information that goes to the Working Group of Council as they finalize the report for the NINDS leadership and Advisory Council.

Thank you for taking the time to provide your feedback!"

Am very pleased that anything is going forward. I haven't grasped what the Working Group of Council is doing, what its role is, and am too fatigued currently to look it up. It's all felt a muddle to me because my focus was on the NIH intramural study.

 

Interesting - did you have "special circumstances" (apologies you may have explained already)?
I think the pragmatic approach they're adopting with you is good - I'd like to have the same!

 

I'm not sure to what extent likes will impact the working group's report, but you can still like ideas and comment on them. This may be a good way to amplify the signal for good ideas - but only if you have the energy to engage with the system. You can like an idea once a day.

 

OK - you don't mind if I highlight that they [NIH] have offered to do this?

 

I received this reply from NIH/Vicky* - not actually surprised i.e. it's consistent with my impression of Vicky - pragmatism +++. Hopefully I'll be pleased by the recommended options!

Not sure I'll try to add anything since I've sort of covered immune stuff by reference to Maureen Hanson's talk -

*"Hi Francis,


You feedback will be included along with all the feedback we received on IdeaScale. No worries and thank you!

Vicky"

@Simon M

 

Thanks @Hutan , Do you just submit the suggestion or A rationale as well?

 

Good idea i.e. there may be circumstances where it's useful to highlight the rational for a particular suggestion.

 

Folks - my request for - whole genome sequence/rare variant study looks like a larger version of this family study by Fereshteh Jahanbani - https://www.omf.ngo/molecular-underpinnings/ & NIH webinar titled - "Characterizing the Genetic Basis of ME/CFS through Case-Control and Family Studies, Fereshteh Jahaniani, PhD. Stanford Varuna Chander, PhD"
Similarly, my request for better metabolomics data would logically be part of a larger genetic family study.

Grateful if you'd consider cross referencing Fereshteh's family study in your responses to NIH.

Thanks

 

I watched Dr. Shuzhao Li (associate professor investigator - Jackson Laboratory) presentation metabolism webinar "The interplay between Metabolism and immunology in ME/CFS" [https://event.roseliassociates.com/me-cfs-research-roadmap/recordings/].
The summary slide (50 minutes from start) states "Dysregulation involves microbiome and xenobiotics".

I think I recall @Jonathan Edwards saying that potentially T Cells function is tolerance of food*? Anyway, thought occurred that perhaps T Cell responses are to "microbiome and Xenobiotics" - basically leaky gut?

*Perhaps I was misinterpreting this post or there was other one(?) -
"Coeliac is unique in that it has a T cell response to a foreign antigen that should be tolerated as food and an autoreactive B cell response (no autoreactive T cells as far as I know)."
https://www.s4me.info/threads/scien...oimmune-patients-are-women.37098/#post-513706

 

Need to look at this presentation again, but I think the speaker highlighted the:

• poor metabolic coverage - currently most of the data is from Metabolon* [1000 metabolites?];
• fact that the immunological data could be better - didn't include the newer technologies

On the plus side that would appear to provide opportunities - particularly if GWAS [DecodeME] doesn't pan out.
*
https://www.metabolon.com/