United Kingdom: Action for ME's PRIME project - research infrastructure

ellesa said:
Interview by David Tuller with Chris Ponting
  • Annual conference, 4 workshops a year.
  • Half a dozen academics co-leading.
  • Project reaching out to industry.
  • A project manager who will seek new links with industry, academia and international projects.

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Iirc Chris also said they would meet once a week? It sounds like exactly what ME research in this country needs. Some unity and direction. I'm particularly excited by the possibility of new specialists in DecodeME gene areas getting involved.
 
Sasha said:
Yes, he did, which surprised me and also made me very happy - it would be real hands-on, lets-get-on-with-it stuff.
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I also appreciated the way he framed it as 'we need to accelerate ME research towards effective treatments and diagnostics'. I think so much emphasis is often put by researchers on biomarkers and tests that you question whether they understand what the real priority is. Whereas when they emphasise the treatment part of it as Chris did makes me think they really get it.
 
Great interview. Thanks to Chris and David. Really good to hear more about the project. Clearly a lot of work going on from a lot of people behind the scenes but the collaboration between AfME and Chris seems to continue to be really productive.

We’re lucky to have people like this working on our behalf now. (Not the best phrasing I know, as we’re not lucky in many ways and we deserve so much better than we’ve had, however I hope people understand the sentiment)
 
Utsikt said:
There’s talk about creating two consortia. Do we know if there are any plans for coordination of media appearances, government lobbying etc.? It would be nice to have some heavy hitters on our side.
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No, no plans, as that would be mostly for the charities to organise. In particular, it would not be appropriate for PRIME to be using their funding for lobbying.
 
Andy said:
No, no plans, as that would be mostly for the charities to organise. In particular, it would not be appropriate for PRIME to be using their funding for lobbying.
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Is lobbying in your own time also inappropriate? Can any researcher ever speak publicly on behalf of the consortia on any matters not directly related to the research they are doing?

Would applying for more grants on «company time» be allowed?

I’m just trying to understand the limitations here.
 
Utsikt said:
Is lobbying in your own time also inappropriate?
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Most of the time, no.

Utsikt said:
Can any researcher ever speak publicly on behalf of the consortia on any matters not directly related to the research they are doing?
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Well, that would come down to all individuals involved but, in my experience, typically a researcher would only speak as an individual when a topic is not directly related to the research of a consortia that they were a member of.

Utsikt said:
Would applying for more grants on «company time» be allowed?
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Only if grant application was a specific activity that they were funded for.
 
Utsikt said:
I hope PRIME will result in more researchers being active in the public debates, but I guess I have to temper my expectations.
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Me too, but I suspect in the media sphere at least they'll hold fire until they have something to announce. It doesn't have to be study results, but it does need to give reporters a bit of something to chew on.

One thing the partnership might make easier is AfME's responses to press stories that are given prominence despite being misinformed or featuring grifters selling magic beans. If they write a letter challenging it, there's a ready made list of senior academics they could approach to ask if they'll sign it.
 
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