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

[Sean]

I believe that there is strong evidence that CBT/GET do not lead to higher fitness or activity levels.

I'll just leave this here:

"in the later stages of treatment patients are encouraged to increase their activity (which must ultimately be the aim of any treatment)"

Wessely, David, Butler, & Chalder – 1990

 

[chrisb]

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?

 

[Skycloud]

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

 

[JohnTheJack]

There are loads of good and informed patients that people will have never heard the names of. I don't know the other lay members on the committee, but that doesn't surprise me. Also, I do think that there's some reason to be careful about the right to privacy of those who did volunteer. The problems with the professional members means that we have good reason to be concerned about every part of this process, but I still think it's worth treading very gently here. I think I'd feel much less comfortable criticising any lay members than the pros, even if there was a record of them doing/saying really unreasonable things.

Yes, agreed. I think we need to be very careful with regards the patient members. It's why I was purposely a bit vague.

 

[Russell Fleming]

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.

 

[Invisible Woman]

Thanks for the update @Russell Fleming.

 

[Andy]

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.

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

 

[Andy]

Just received an email from NICE

Dear all,
NICE are still recruiting for the following positions on the Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) guideline committee:

· community paediatric nurse
· specialist nurse
· dietician

All the information about the roles including how to apply can be found at the link below:

https://www.nice.org.uk/get-involve...-diagnosis-and-management-guideline-committee

Please note the closing date is Friday 23rd November and telephone interviews will be taking place on Thursday 29th November.

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

 

[Dolphin]

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

 

[Cinders66]

25% group have written letter

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

 

[Cinders66]

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?

 

[Gday!]

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

 

[It's M.E. Linda]

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

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

 

[Gday!]

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

 

[It's M.E. Linda]

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

Thank you!

 

[JoanneS]

Hope 4 ME and Fibro N. Ireland Facebook page

 

[Tom Kindlon]

 

[Gday!]

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.

 

[Amw66]

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.

 

[MSEsperanza]

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):

Dr William Weir, a retired consultant physician who says ME is caused by a chronic viral infection, called the decision "almost satirical". "If the scientific data is properly examined it will be seen that Professor Wessely's doctrine is wrong and it will be proved to be wrong in about five years' time," he said.

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):

So it is with sadness that we read in The Independent on Sunday reports of false allegations made against Simon Wessely - one of the few UK clinicians with a specialist interest in treating CFS/ME and someone who has done pioneering research in the field. Ironically, it was because of accusations like this that Professor Wessely received the award in the first place.

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