UK NICE - Projects to support the development of the NICE guideline on ME/CFS: diagnosis and management

https://www.rcplondon.ac.uk/ngc-guideline-development

 

Please note: You must return your proposal by 5pm on 24th April.

16 days notice!
Isn't that a bit of a short notice to produce a project?

 

I'm confused.

I thought they already appointed a dubious committee to do this?

 

I have a horrible feeling about who might tender for the first project.

 

It seems very late to be putting out to tender for proposals to employ people to do research projects. Maybe this has come out of the committee meetings so far?
? @adambeyoncelowe

 

unless they know of researchers who just happen to have one they 'prepared earlier'..(?)

 

If this announcement were made in the US the ME/CFS researchers would be able to submit their proposals in no time. It actually concerns me if there are no researchers in the UK able to do this at the drop of a hat.

 

Biobank staff should tender for this! Eliana?

 

Hopefully not already a done deal, and just a box-ticking exercise? Surely they could not get away with doing that?

 

They've gotten away with everything else.

 

I’ve emailed the link to Caroline Kingdon for their information.

 

I've no idea what this is. I'll try and found out. It may just be focus groups for those patients (children and the severely affected).

 

I hope my gut feeling is wrong re children's one: given the research to date i have very real concerns.

 

In that case methinks the right hand hath no idea what yer actual left hand doeth?

I know I should be a bit more respectful (slaps left wrist).

 

When we stakeholders were at the 2nd meeting with NICE, we were asked at our table for ideas on how to include groups such as the severely affected in the guideline development process

It sounded then as if they wanted a system to be able to (probably remotely and they mentioned Skpe and video conferencing) get input from a focus group into the guideline development.

It wasn't clear then what actual power this group would have to influence the guideline content or at what point of the development they would be asked to comment on

 

I actually think there are some serious ethical issues here with researchers accessing patient groups. The issues would be severe if the researchers were involved in service provision themselves. If they were not there would be other issues. Any project would need ethical approval which could take 3 months. It is not clear what the project is supposed to find out. It seems crazy to me to put this out now without a clearer explanation.

 

Nah, it'll be fine, they can just roll the ethical approval over from some sort of service provision can't they???

 

Yep. No one will notice.