Idiot - I missed the deadline!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.
"
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"