2024: USA NIH NINDS ME/CFS Research Roadmap - now published

Emailed this at "9:58 PM" (UK time)*. My wife told me to do it earlier - why do I keep making the same mistakes (re time management)!
My keyboard doesn't have "M" & "n" - some typos!
Forgot to indicate whether I wished to have my name published (or indeed include my address etc.) - kind of hoping they'll come back to me on that!


*"Research priorities -
1) Genetics -
  • whole genome sequencing to look for rare variants. Possibly a family study i.e. families with more than 1 member affected and at least one severe;
  • GWAS - depending on outcome of DecodeME. Experience from e.g. dementia indicates that large studies may be required to find target genes.

2) Immunology -
Maureen Hason's talk i.e.
  • indicating the need to look at other cell types e.g. monocytes. I think Professor Joatha Edwards has said [Science 4 ME] that B-cells have been extensively studied and not much found;
  • Platelets seem to be different in ME/CFS [Hason].

3) Metabolism -
  • Raman spectroscopy may provide a diagnostic tool and appears to be a useful research tool e.g. differentiating ME/CFS from other illnesses ad identifying compounds which contribute to those differences (amino acids);
  • as highlighted by Vicky Whitteore, major gaps in metabolic coverage, run in parallel with Raman spectroscopy these see to be routes to potentially identify abnormalities which could be used for diagnosis and providing insight into disease mechanism.
  • As highlighted by the speaker from Jackson - need to use currently available immunological techniques and combine these with metabolics - that may yield insight into areas to focus research.

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.
 
Emailed this at "9:58 PM" (UK time)*. My wife told me to do it earlier - why do I keep making the same mistakes (re time management)!
My keyboard doesn't have "M" & "n" - some typos!
Forgot to indicate whether I wished to have my name published (or indeed include my address etc.) - kind of hoping they'll come back to me on that!


*"Research priorities -
1) Genetics -
  • whole genome sequencing to look for rare variants. Possibly a family study i.e. families with more than 1 member affected and at least one severe;
  • GWAS - depending on outcome of DecodeME. Experience from e.g. dementia indicates that large studies may be required to find target genes.

2) Immunology -
Maureen Hason's talk i.e.
  • indicating the need to look at other cell types e.g. monocytes. I think Professor Joatha Edwards has said [Science 4 ME] that B-cells have been extensively studied and not much found;
  • Platelets seem to be different in ME/CFS [Hason].

3) Metabolism -
  • Raman spectroscopy may provide a diagnostic tool and appears to be a useful research tool e.g. differentiating ME/CFS from other illnesses ad identifying compounds which contribute to those differences (amino acids);
  • as highlighted by Vicky Whitteore, major gaps in metabolic coverage, run in parallel with Raman spectroscopy these see to be routes to potentially identify abnormalities which could be used for diagnosis and providing insight into disease mechanism.
  • As highlighted by the speaker from Jackson - need to use currently available immunological techniques and combine these with metabolics - that may yield insight into areas to focus research.
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"
 
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.
 
I got this very nice reply to my suggestion that they extend the deadline on the process:

Thank you for your email. We are under a tight timeline to summarize the feedback we received via email and on IdeaScale in order to complete the report for the NINDS Advisory Council. You may provide feedback via email and it will be incorporated into the report if we receive it within the next couple of weeks. After that, we will need to finalize the report. I appreciate the challenge of submitting your feedback, so please do send it to this email address when you are ready.

Best wishes,
Vicky

So, further feedback can be sent to MECFSResearchRoadmap@ninds.nih.gov over the next week or so.
 
I got this very nice reply to my suggestion that they extend the deadline on the process:



So, further feedback can be sent to MECFSResearchRoadmap@ninds.nih.gov over the next week or so.
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.
 
I'm not sure about putting it out on twitter, I'm not sure about their capacity to cope with lots of submissions. Maybe just leave it here?
Or, contact Vicky to clarify?
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
 
Emailed this at "9:58 PM" (UK time)*. My wife told me to do it earlier - why do I keep making the same mistakes (re time management)!
My keyboard doesn't have "M" & "n" - some typos!
Forgot to indicate whether I wished to have my name published (or indeed include my address etc.) - kind of hoping they'll come back to me on that!


*"Research priorities -
1) Genetics -
  • whole genome sequencing to look for rare variants. Possibly a family study i.e. families with more than 1 member affected and at least one severe;
  • GWAS - depending on outcome of DecodeME. Experience from e.g. dementia indicates that large studies may be required to find target genes.

2) Immunology -
Maureen Hason's talk i.e.
  • indicating the need to look at other cell types e.g. monocytes. I think Professor Joatha Edwards has said [Science 4 ME] that B-cells have been extensively studied and not much found;
  • Platelets seem to be different in ME/CFS [Hason].

3) Metabolism -
  • Raman spectroscopy may provide a diagnostic tool and appears to be a useful research tool e.g. differentiating ME/CFS from other illnesses ad identifying compounds which contribute to those differences (amino acids);
  • as highlighted by Vicky Whitteore, major gaps in metabolic coverage, run in parallel with Raman spectroscopy these see to be routes to potentially identify abnormalities which could be used for diagnosis and providing insight into disease mechanism.
  • As highlighted by the speaker from Jackson - need to use currently available immunological techniques and combine these with metabolics - that may yield insight into areas to focus research.

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
 
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/].
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/
 
I managed to send something in yesterday, a list of studies I'd like to see and a list of research characteristics that I don't want to see (the Walitt et al paper featured heavily as an illustration of various research characteristics that I don't want to see). It was inadequate, other stuff to do...

I think an email to the email address mentioned above could be one way to express concern about the NIH intramural study, by highlighting the things about it that we don't want to see happening again. Something short would do the job. (Keeping in mind that there has been no indication that Vicky of NIH is part of the problem, and actually she has been very kind in offering flexibility about the feedback deadline.)
 
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