SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

SolveME sent a newsletter and has a page about providing funds for a couple projects, including SequenceME. I posted on the Solve thread.

This is from the email:
  • We're proud to announce Solve’s latest Catalyst Award-winning projects, which will expand whole-genome discovery and test a promising low-cost therapy targeting inflammation and energy dysfunction—key steps towardbiomarkers and clinical trials.
  • Dr. Jay H. Chung (National Institutes of Health) was awarded Catalyst funding for his study, “Mitochondrial stabilizer IVO-21 as therapy for ME/CFS," and will join Solve for a webinar on September 8. Register here.
  • The DecodeME Management Team was awarded Catalyst funding for their study, "Sequence ME & Long Covid," and will join Solve for a webinar on June 10. Register here.
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Is this new funding we hadn't known about yet?
 
forestglip said:
SolveME sent a newsletter and has a page about providing funds for a couple projects, including SequenceME. I posted on the Solve thread.

This is from the email:


Is this new funding we hadn't known about yet?
Click to expand...
This funding from Solve went towards phase one of SequenceME. I believe that we were unable to announce it at the time of the other funding as Solve wanted to announce it today, so it's technically not new funding but is the first time it has been made public.
 
Huge congratulations to all involved in achieving Sequence ME's success. This is mega news.

It does seem peculiar to fund the sequencing and not the analysis, but presumably getting funding for the analysis work will be much easier once there is a £4.75m dataset sitting there waiting to be investigated?

The NR comments validate the work by many to push him out of the MEA, but I find it a little sad that it has become a talking point today. Today I want to celebrate SequenceME's success.
Perhaps we can also celebrate that NR is no longer in a decision-making position at the MEA, or on how ME funds are spent.
 
Amazing news! Just what I needed haha. :)

A shame it's only partial funding but sequencing the ME/CFS samples does seem the most important thing to pursue right now. Would be hard to see the analysis not getting funded afterwards. That should already give us lots to work with.

Then maybe the Long Covid part will be able to attract LC specific funding.
 
Well done to everyone involved!

Andy said:
The definition is yet to be decided upon and forms part of the work already funded by previous supporters. I can't guarantee at this stage what the definition will be but we are well aware that it will need to be better than anything as vague as "3 months of any symptom at all after a Covid infection". Given that eventually we will be comparing them with DecodeME particpants I personally would like to see all LC participants evaluated with the DecodeME questionnaire for likely ME/CFS status.
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Yes, maybe it's even smart to have 2 sets of Long-Covid cohorts, one meeting the ME/CFS status per DecodeME questionnaire and one without PEM. You can then possibly get an understanding of whether or not PEM is driving the signal, which arguably you might not be able to get otherwise, but one may wonder how heterogeneous such a cohort would be in the first place and what they would consist of. If they aren't homogenous enough they might just as well look similar to healthy controls which in turn maybe wouldn't offer to much, but possibly there's a sufficiently large pain dominant or cognitive problem dominant LC cohort?
 
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