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

Sorry I am reading CS statement as he applied to be on the committee but was refused and still has constraints placed upon himself on commenting.

Past tense

Past tense.

I applied, not, I have applied.

There are at least 8 announcements confirmed for the professional part of the committee and Charles Shepherd is not one of those. Why would that be? Either they are going to let him in or not. Why hold up an announcement?

I think this asks further questions about the process of transparency for those accepted and those declined.

Just my take from his statement. This back and forth rangling is doing my head in between the Cochrane issue and the NICE review.

 

LOL

I’m up for debate - friends and family know that!! xx

But for now, both on here and in other places, I need to lower my public profile. I won’t be publicly debating, or blogging, on ME issues til my service on the committee is completed.

With that in mind I’m weaning myself off all commenting online. My intention is now to mostly “Lurk and Like”, (with “like” really meaning: I’ve seen your post. ).

However I’m happy to be tagged in useful threads. I’m also open to receiving useful material by private message, on here, on Facebook or on Twitter.

I am very fortunate to have a good support network, both in the ME world, and at home. Also, NICE themselves are working with me to make my participation on the GDG as easy as possible.

So, although I am well aware of the enormity of the task ahead, I think strong scientific debate is the way to move forward.

I am sure @adambeyoncelowe is also well up for such debate too.

Now, I really will try and slide properly into this “Lurk & Like” mode. xx

 

Bon lurkage, @Keela Too!

 

That made me laugh out loud! Thank you . . . . “lurkage” . . . I like it.

 

I wonder whether the professionals appointed to the committee will now be similarly required to cease expressing or promoting in public their views on ME until the findings of the committee are published. Presumably, for example, none of them will be permitted to speak at conferences now that their membership of the committee is known. It would be invidious to have different standards.

 

Good luck @Keela Too and thanks very much for taking this responsibility on. I'm really glad that you and @adambeyoncelowe have been accepted onto the committee - but I don't envy you the responsibility. We're all here for you both if you need any moral support in the months ahead.

 

Why has Nice revealed the names of the members of the GDG in different sized groups? How does CS know there are more to come? Curious.

 

I'm afraid I've been having the opposite thought - if they are not announced as members, then they have been effectively silenced by being kept on tenterhooks until the end of the process.

But as you say, neither of us has any idea.

I wonder who does know what's going on?

 

Perhaps we will know more next week? ->

Apologies for both, @Andy, if I didn't see you posting about this earlier and for not being sure what "earlier" might mean exactly: Earlier today? Earlier this week?
(Things like that are the really difficult language specialities to learn for me.)

 

You didn't miss anything language-wise, "earlier" is just as unspecific for native English speakers. It just means previously, recently, before. Probably in the last day or so given the context, but only @Andy knows what it really means

ETA: just noticed Andy said "earlier on", so that is probably earlier on the day of his post.

Perhaps we could have a forum sweepstake on when exactly Andy sent his email, to lighten the gloomy mood of this thread? Just an idea.

 

In this case I meant, but didn't specify, earlier this evening and unfortunately far too late in the day for a response from them before the weekend.

 

Thank you, @TiredSam -- if my brain had been on the spot, I should have spotted the "on" (another challenge: if clauses!).

Thank you, @Andy (although you now spoiled the forum sweepstake)

 

OT, but @rvallee might find it useful to know that there’s a dedicated post/thread for commonly used abbreviations somewhere I’ll see if I can find it and add a link.

ETA link: https://www.s4me.info/threads/acronyms-and-abbreviations.457/

 

UNLURK - There are still further places on the committee that will be announced in due course. This came in an email to me (and other lay members) this afternoon, that I just picked up now. Email said it was okay to share this info. - BACK TO LURKING.

 

Excellent unlurk @Keela Too

 

Do you have a black cape that allows you to rapidly swish back into the shadows when you are in lurk mode ?

Hello..

hello...oh she’s gone again

 

Glad to hear this......... but why so much procrastination and intrigue from RCP and NICE? Or should one not ask............? One a small victory regionally for Suffolk and Norfolk yesterday re service development, NICE or no NICE!

 

Perhaps it's possible for lay members to point out that harm cannot be reported via the yellow card system. Patients can make a complaint about the healthcare professionals but that is more difficult to do. Especially for people with energy and cognitive problems.

 

https://twitter.com/user/status/1056086495055015936

https://twitter.com/user/status/1056086756204953602

https://twitter.com/user/status/1056104308641619969