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

[Ravn]

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.

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

 

[hotblack]

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?

 

[Kiristar]

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?

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.

 

[hotblack]

Thanks for clarifying what happened @Kiristar
It’s great that researchers and charities are doing what they can and a real shame the government hasn’t got behind it more.