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

Andy H said:
Horrifying!

Tony, Luis, Sally & Adam should all resign under protest that the NICE process is very evidently not fit for purpose.

No sign of any medical practitioner who understands severe ME such as Drs Speight or Weir or any legal oversight for patients such as from Valerie.
A kick in the guts from NICE.
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I don’t see benefit of anyone resigning at this point the committee isn’t fully formed and hasn’t started work yet.
 
MEMarge said:
I think the physio could be far worse....

She was at our table for the scoping mtg. She is obviously v pro Crawley and is the one who said that the Magenta results were looking good!

However, she has only been under the Crawley dept since 2015. EC can be very persuasive if you don't know much about ME, plus the lure of publishing could be attractive...

I have some degree of hope that she might be open to reason, when she hears more about PACE gate etc.

At least we don't have a Liaison Psychiatrist in the team.
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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.
 
NelliePledge said:
I don’t see benefit of anyone resigning at this point the committee isn’t fully formed and hasn’t started work yet.
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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.
 
Andy said:
Initial information gathering on the professional members. I have tried to find anything that would seem to indicate a BPS, or otherwise, approach.


http://www.eastmidlandscongenitalhe...r-fantastic-teams/intensive-care/peter-barry/


Also known as Baroness Finlay of Llandaff, https://www.parliament.uk/biographies/lords/baroness-finlay-of-llandaff/3609


Unable to find anything worthwhile yet. May also be known as Anbarasu Anbu perhaps?


https://www.researchgate.net/profile/Mike_Beadsworth
An author on this study, https://www.meassociation.org.uk/20...nd-the-medical-research-council-2-april-2015/
Author on conference paper "The role of IP-10 in Chronic Fatigue Syndrome.", https://www.fasebj.org/doi/abs/10.1096/fasebj.31.1_supplement.lb789


Co-author on this paper along with Crawley, https://europepmc.org/articles/pmc5947766


Represents 25% Group and TYMES Trust at Forward ME meetings - think we can trust him :)


Based at Bath. https://www.researchgate.net/profile/Jo_Daniels2
Author of poster, "Anxiety and depression in Chronic Fatigue Syndrome: prevalence and effect on treatment. A systematic review, meta-analysis and meta-regression" - I've been unable to find it online anywhere.
Author of presentation, "The prevalence and treatment of health anxiety in Chronic Fatigue Syndrome (CFS)", can be read here, https://www.researchgate.net/public...ealth_anxiety_in_Chronic_Fatigue_Syndrome_CFS
Author of article "Anxiety and depression in CFS/ME: the incidence of health anxiety in chronic fatigue syndrome", abstract can be read here, https://www.researchgate.net/public...of_health_anxiety_in_chronic_fatigue_syndrome


Think we can assume we are happy with this appointment.


Can't find anything initially.
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I found this on Theo Anbu http://www.cfs-aktuell.de/IACFSME Ottawa reader.pdf
On page 82 upload_2018-10-16_16-48-44.png
 
Jonathan Edwards said:
I have not received a no. But don't ask further.
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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.
 
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Andy H said:
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.
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So far we know of 3 people who are BPS. If the four people you suggest resign they will no doubt be replaced by others, who may have a BPS background. Leaving the field clear for the opponent would be a guaranteed way of losing the battle. I’d prefer to see some progress.
 
Thing to consider as well though is that there are still positions to fill
Community paediatrician
Dietician
Epidemiologist
Nurse with specialist interest in ME/CFS
Community children’s nurse
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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.
 
ukxmrv said:
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.
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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).
Interests
Stakeholders are not currently asked to declare interests. The committee including those providing expert testimony are required to declare interests according to the NICE policy.
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Don't think I've read that NICE policy.
 
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.
 
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