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

Andy

Senior Member (Voting rights)
Projects to support the development of the NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.

The NGC are inviting researchers to tender for these two projects

  1. Involving children and young people in developing a NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management
  2. Involving adults with severe ME/CFS symptoms in developing a NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management
Please note: You must return your proposal by 5pm on 24th April.

More information about the projects are in the attached documents.

Contact
For more details please email NGC.Tender@rcplondon.ac.uk, or Dr Norma O’ Flynn, chief operating officer, on +44 (0)20 3075 1400, or operations director Kate Kelley on +44 (0) 20 3075 1403.
https://www.rcplondon.ac.uk/ngc-guideline-development
 
So they’re looking for something equivalent to focus groups to get views from those 2 groups of patients. Obviously approach for people with severe ME will need to be adapted to be appropriate. Would surely expect a key aspect to be the researchers to be involving relevant patient groups ie 25%group and Tymes to design suitable approaches.
 
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
 
Any thoughts on finding some friendly academics that we could work with through the forum here to link with and get patient views?

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.
 
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??? ;)
 
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