NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

One can see potential procedural difficulties with a committee in which some members might be considered by others to have special knowledge which they themselves lack, and which is taking evidence from external experts. Is the process to be driven by appraisal of the external evidence and how does one, in such circumstances, prevent the influence and possible duress from the views of members deemed to have relevant expertise?

 

'Possible duress' would be unacceptable and would be for the chair and vice chair to deal with.

 

Well, I am sorry about that. Looks like NICE hasn't been in touch today. Dr Shepherd is away on business but from what I can tell, no other stakeholders received an email today. Until we hear from NICE we can't issue our statement. So, we'll have to hold fire and hope something appears tomorrow.

 

Thanks for the update @Russell Fleming.

 

Nope, not received anything from NICE today (I'm the S4ME point of contact as the forum is a stakeholder).

 

Just received an email from NICE

which doesn't appear to be the email that you were expecting @Russell Fleming ?

 

No mention of one or two physicians so they presumably have been picked.

 

25% group have written letter

https://25megroup.org/download/2302/?v=2557

 

NICE and some of the stakeholders were most anticipating of Esther crawleys two studies which will be published as the main new evidence. How do we feel the committee as stands will review it and there seems 4 pediatric specific posts or is it 3?

 

Dr Weir has been appointed to the committee with full voting rights

 

Where did you find this out please?!
Brilliant news.

 

Dr Weir phoned Hope for ME N Ireland charity and they have just posted it.

 

Thank you!

 

Hope 4 ME and Fibro N. Ireland Facebook page

 

https://twitter.com/user/status/1060634133288927233

 

Praying for more good people who will work with integrity, I have had enough of all the corruption and profound damage to so many adults, children and families.

 

If only Nigel Speight could have the same luck- EC' s studies would have some context provided from someone who acknowledges severe ME in children..
Great news though.

 

Not able to comment atm - just leave these two links here:

Edit: re: William Weir - "ME: bitterest row yet in a long saga", The Independent, 25 November 2012 (Wiliam Weir, amog others, protesting against honoring SW with the John Maddox Standing up for Science Prize):

https://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html

Edit: re: Gabrielle Murphy among the signatories of an open letter protesting against the article about the said protest, IoS letters, emails & online postings (2 December 2012):

https://www.independent.co.uk/voice...-online-postings-2-december-2012-8373777.html