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

Not with it enough to look back through this thread but someone earlier suggested that the issues arround the individuals with clear financial conflicts of interest (eg marketing training re MUS), etc need specifically addressing, as NICE policies should exclude them from sitting. This is a different proceedural point to the overall concerns about bias and it was suggested that mixing the two together could cloud the issue.

 

Any one willing to take on responsibility for drafting this?

I agree an S4ME group letter would be a good idea.

 

I had a surprise birthday party yesterday, that was great, but ... ... So do not at present have the intellectual capacity, but if no one takes it on I will later (after some more sleep) go through this thread to pick out the relevant information.

 

In haste - #MEAction have come up with something but I haven't had time to read the form-letter provided:

https://www.meaction.net/2018/11/03/action-needed-nice-appoints-committee-rife-with-bias/

 

Here is the body of the MEAction suggested draft for people to adapt to send to NICE

Although very relevant, the MEAction approach allows NICE to potentially mix the issues of bias and with conflicts of interest as defined by themselves. The feeling of those commenting here seems to lean towards dividing the two, trying to deal with formal conflicts of interest now, but addressing the overall bias when the full committee is announced.

 

Posts relating to the drafting of a letter to NICE about conflicts of interest in the Guideline appointments have been moved to this thread: https://www.s4me.info/threads/draft...-interest-in-the-guideline-appointments.6519/


Not sure that Joanne Bond Kendall has a PhD/should have title of Dr. No mention in https://web.archive.org/web/20181027111941/https://apcp.csp.org.uk/content/joanne-bond-kendall

 

A first draft of a letter to NICE regarding the conflict of interest of Murphy and Bond-Kendall has allready been written.

Further discussion has been moved to this thread:
https://www.s4me.info/threads/draft...-interest-in-the-guideline-appointments.6519/

 

Added grammary edits.

 

With regard to the BPS-biased committee members, I just wondered who will actually be in charge of screening and assessing the material on which the committee will base their discussions and decisions?

The NICE manual mentions diverse people who seem not to be supervised by the committee:

https://www.nice.org.uk/process/pmg...overview#main-stages-of-guideline-development

https://www.nice.org.uk/process/pmg20/chapter/reviewing-research-evidence

Do we have to consider this at this stage regarding how to ensure that those people will do their jobs properly?

 

I do not think this is a major concern. Peter barry assured people present at the scoping meet that in this case whatever the committee members thought needed considering should be included. I have reason to think he is sincere about this. There will be members of the committee who may want to bring in published material that has not been identified by the technical staff.

I will be acting as an expert witness for the committee - I have now received an official invitation and signed my forms. I will also try to ensure that relevant material is brought to members' attention.

 

Great news thank you

 

So it was definitely worth the phone call to the RCP lady on the day of the interviews it seems..... Great news!

 

Yes, thank you, @Suffolkres.

It seems that my application had not been exactly forgotten but that phone call precipitated a usual dialogue that helped a lot in reaching a sensible outcome.

 

Thank you Jonathan- I’m sure I speak for us all when I say that your involvement is greatly appreciated. I’ve no doubt you will make a difference.
I’m so grateful for your ongoing interest and tenacity!

 

Fantastic news (though it would have been even more fantastic if they had actually appointed you to the committee).

What determines when or how often you get called in to give evidence/opinion?

 

Oh thank God!!! at least there will be one non-lay sensible voice being heard!

 

I think this may be the most useful arrangement.

I have no idea exactly what I will be asked to do.

There will be a few more than that.

 

When will the review take place?

 

Over the period, roughly, Feb 2019 - Sep 2020 I would guess, via a series of committee meetings. What I do not know is whether the tech team have already been working on literature searches or whether nothing starts until the committee is appointed.

 

More news from NICE about other committee appointments expected tomorrow (Thurs. 8th November). Anyone working on, or sending, letters might want to wait until then.