After DecodeME - next steps for the ME/CFS community?

Peter T said:
I guess from the point of view of creating a useful studentships a host institution and an appropriate supervisor would need to be identified. Presumably in relation to the DecodeME data it would make sense such a grant being attached to Prof Ponting’s department.

However I think any thing that increases the number of people researching ME/CFS is well worth pursuing.
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I’d love to see a sort of centre of excellence in Edinburgh with lots of students under CP’s lead but that’d be a different strategy

I was actually more thinking in terms of a ‘floating’ scholarship that people anywhere in the world can take to their local university to maximise the appeal, no need to move to some other place, and you get to drag in new-to-the-field supervisors at the same time, two for the price of one. You’d need the scholarship administrators to know what they’re doing and be good at supervising the supervisors

Could be totally impractical, certainly is highly unconventional, but then not much about ME is conventional
 
Yeah, I think the idea of a research hub based in Edinburgh was pushed for by various people before the Delivery Plan and there’s the ME Genetics Centre of Excellence. It would be great but is in a way a bigger and more traditional approach. (Edit:fixed an unfortunate typo!)

I like the idea @Ravn proposes as a sort of (lower cost and more unconventional) effort to raise awareness though. Perhaps ties in with some previous ideas about S4ME somehow raising money and funding a student or postgrad?
 
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hotblack said:
Yeah, I think the idea of a research hub based in Edinburgh was pushed for by various people before the Delivery Plan and there’s the ME Genetics Centre of Excellence. It would be great but is in a way a bugger snd more traditional approach.

I like the idea @Ravn proposes as a sort of (lower cost and more unconventional) effort to raise awareness though. Perhaps ties in with some previous ideas about S4ME somehow raising money and funding a student or postgrad?
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The idea of a research hub was the documented consensus conclusion of the DHSC Delivery Plan's Research Working Group (excluding the government members due to conflict of interest) at the end of its 2 years researching and debating the issue with government representatives.
This call was then taken up by some of the researchers and charities involved.
 
Now DecodeME is out and youre back on dry land @Jonathan Edwards, I'd like to pick your brain about a couple of things if I may. I thought this thread might be the appropriate venue.

Firstly, you said a couple of months ago that DecodeME is one of a number of studies that should provide us with an overall picture of what is going on.

Could you tell us how many more of the studies that make up this picture are yet to be published? I also recall you saying a number of threads will be drawn together by around September time, which will make the way forward clear. Do you still expect this to happen, and in the same timeframe?

The other thing I'd like to ask is about drug targets...you said a while back (in the Zhang thread, I believe) that when we'd shaken things down a bit after getting the DecodeME results, you thought potential drug targets would emerge. Do you still believe this, and if so, do we have what we need to sift through with the Zhang paper, Decode, and Fluge and Mella's HLA paper etc or do we need to wait for these other papers to emerge first? Or perhaps that pesky HLA data from DecodeME?
 
Hi @V.R.T.

Things are evolving pretty much as I suspected. Just at the moment we are in the middle of a maelstrom of thoughts around how DecodeME shifts our perspective. I am not sure I can distil anything intelligent out of that. I am aware of other studies, some genetic, some not, which will report at some stage but I don't have details. I expect further genetic analysis to go on over the next few months making use of what data are now in the public domain. I think lots of conceptual avenues will be opened up and many then discarded.

I still think that drug targets may emerge and possibly quite quickly, but probably not before Thanksgiving!
 
Jonathan Edwards said:
Hi @V.R.T.

Things are evolving pretty much as I suspected. Just at the moment we are in the middle of a maelstrom of thoughts around how DecodeME shifts our perspective. I am not sure I can distil anything intelligent out of that. I am aware of other studies, some genetic, some not, which will report at some stage but I don't have details. I expect further genetic analysis to go on over the next few months making use of what data are now in the public domain. I think lots of conceptual avenues will be opened up and many then discarded.

I still think that drug targets may emerge and possibly quite quickly, but probably not before Thanksgiving!
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Do you think the drug targets will emerge from the genetic work specifically (and discussion arising from the genetic work) or from something else? I don't see a clear and rapid route from the DecodeME findings to drug targets.
 
Jonathan Edwards said:
Hi @V.R.T.

Things are evolving pretty much as I suspected. Just at the moment we are in the middle of a maelstrom of thoughts around how DecodeME shifts our perspective. I am not sure I can distil anything intelligent out of that. I am aware of other studies, some genetic, some not, which will report at some stage but I don't have details. I expect further genetic analysis to go on over the next few months making use of what data are now in the public domain. I think lots of conceptual avenues will be opened up and many then discarded.

I still think that drug targets may emerge and possibly quite quickly, but probably not before Thanksgiving!
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Thank you, that's a reassuring answer, if a little cryptic in parts haha(I would love to know the significance of Thanksgiving!).

Like Sasha I would be interested to know where these possible drug targets will arise from. I note that Chris Ponting said in his post publication interview with David Tuller that the DecodeME results alone can't tell us what the effective drugs that will hopefully be developed in the future will be. So I assume it has something to with still to be published studies, and perhaps how all the data we already have fits in with them.

I am especially intrigued by the prospect of non genetic studies in the pipeline with interesting findings. As you say we are sort of in a maelstrom of post DecodeME speculation and uncertainty right now, so I am glad to know that things are largely on course regarding your previous prognostications.
 
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