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

How? edited ...
She lied, suggested kids benefit from GET and avoided admitting that kids are harmed by it etc.

 

No matter how terrible things are, they could nearly always be worse. That's not particularly cheering news, and she sounds completely unfit to be on a committee like this.

 

Some of the deckchairs are being nailed to the deck.

 

How on earth can such a heavily BPS weighted GDC produce useful guidelines? There will be far too much treading middle ground. Too many involved with an interest in protecting their voodoo careers. NICE promises broken, and their process needs a major overhaul. Unless the selection is challenged, we're stuck with it and another 10 years to wait.

 

I found this on Theo Anbu http://www.cfs-aktuell.de/IACFSME Ottawa reader.pdf
On page 82

 

An instance of "my- likes- do-not-mean-I-like-that". Not at all.

Actually, more such NICE instances here today.
(can't find the puke emoticon)

Edit:
Nevertheless: Thank you for trying.

Also nevertheless: Thank you to all other forum members and staff who have been and will be fighting for us, and for now particularly @adambeyoncelowe , @Keela Too and all who have been appointed on our behalf.

 

And there is this http://www.gosh.nhs.uk/file/7666/download?token=5NRu7f3L

 

Yes - as ever my focus is on the things I think we need to fight to try to change, but those names were certainly cheering to see.

 

Thanks for this @Tilly.
I am wondering why, in the list of Poster presentations on Page 11 of the above, it says Georgetown University at the end of the info.

I guess it's probably a typo. It would have been hopeful to think that he had been in contact with Dr Baranuik from there.

 

I think we need to loudly protest when someone who is obviously a BPS stooge is on the committee and ask for them to be replaced with someone who can assess the evidence with an open mind and not be in a conflict of interest.

 

I thought NICE had said that they would only consider independent people for this review?

 

Thing to consider as well though is that there are still positions to fill

Now I appreciate that could go one of two ways, but there are now two, I think, "Nurse with specialist interest in ME/CFS" as part of the CureME team, so it would be great if one of them could get involved.

 

Also possibly worth protesting two people from the same institution? Jo Daniels and Joanne Bond-Kendall from Bath.

On conflicts of interest, NICE said this in response to a Stonebird comment (page 65 of the final scope stakeholder comments doc).

Don't think I've read that NICE policy.

 

Dr Nigel Speight and Dr Willy Weir applied to be on the NICE committee but both were turned down.

 

Not that we are likely to find out but it would be very interesting to find out why.

Could a FOI request be made to find that out? @JohnTheJack , you seem to be well versed about FOI requests, what do you think?

 

I would suggest waiting for a while to see how things unfold.

 

For me, the thing about the BPS position here at this point is that they can not by any means pretend (with any credibility) to not know what stands against them in terms of the critique of their position.

If some of these people hope to have a career in the long term (next twenty years or more) they may go home and think on the consequences of shoring up a flailing position. Or maybe not. There may be scarier things at play that prevent them from saving themselves in the long run. Or possibly they miscalculate that this will keep their position strong rather than making them look mean or foolish.

I do think that there ought to be some accountability for the outcome.