NICE seeking committee members for Me/CFS guideline

Received today....
Dear all,
NICE are recruiting committee members to join the Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome guideline.

We are looking to recruit to the following positions:
· GP
· Physicians with an interest in chronic fatigue syndrome
· Community paediatrician
· Community paediatric nurse
· Specialist nurse
· Dietician
All the information regarding these roles including instructions on how to apply can be found at the following link:
https://www.nice.org.uk/get-involve...-encephalopathy--and-chronic-fatigue-syndrome
The closing date for applications is Wednesday 26 September at 5pm.
Any queries please let me know.
Many thanks,
Amy
Amy Kelsey | Senior Project Manager
National Guideline Centre | Care Quality Improvement Department | Royal College of Physicians
11 St Andrews Place | Regent’s Park | London NW1 4LE
Mobile +44 (0)7557199906
www.ncgc.ac.uk | www.rcplondon.ac.uk | facebook | twitter | linkedin
NGC is a governance partnership between the Royal Colleges of General Practitioners, Nursing, Physicians and Surgeons.
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Thank you for your co-operation.

 

Hmmmm - not stakeholder involvement...

 

I hope there is a big push back for not including patients.

I'd go as far as saying that without patient reps on the committee, any guidelines they develop are automatically illegitimate.

 

[My bold]

 

The lay member applications closed in June x

Edit - or was it they opened in June and closed in July? Think the latter actually.

 

I thought that they'd already had their application period for professionals too?

If they've re-opened applications, that probably shows we did a poor job with encouraging good professionals to apply. Getting good people onto the committee would probably be a lot easier than trying to change the guidelines written by a bad committee.

Does anyone know anyone that would be good for these posts?:

· GP
· Physicians with an interest in chronic fatigue syndrome
· Community paediatrician
· Community paediatric nurse
· Specialist nurse
· Dietician

 

Yes, I am pretty sure the original application period was the same as for lay members. It looks a bit as if they have had no takers.

Luis Nacul would be a good person to be involved.
Or indeed Caroline Kingdon, the research nurse specliaist at LSHTM

 

Could you ask them @Jonathan Edwards ?

 

The patients have already been interviewed and decisions will be made by the end of next week. Apparently they had a very high volume of applicants, which is very positive.

They asked applicants if there was any reason their appointment might be considered controversial. I suspect they're screening professionals in the same way, and so need people who may not already have a reputation in the area.

 

I will be seeing them next week.

 

Looks like the prospect of Michael Sharpe's letter writing and twitter campaign must have scared them all off. Who wants to be on the receiving end of the PACE authors' vexatiousness?

 

i had already sent them both the advert.

 

Dietician is a bit surprising to see listed, is there sound science specifically linking diet to ME beyond the link to general well-being ?

 

It was in the draft scope, so not too surprising. I think with IBS issues frequently co-morbid (or part of ME), we specifically need someone who can deal with those. Whether it should be a dietitian or something else is another matter, however.

 

To facilitate sharing:
https://twitter.com/user/status/1038420283449851905

 

I asked the same question at the Scoping mtg.
Some people mentioned re microbiome research etc, but I doubt that a regular dietitian would have much clue on that. (I used to be one).
I understand that the 25% group have been trying to ensure that NICE have someone on board who knows re tube-feeding, this could be a specialist: dietitian or nurse or a gastroenterologist.