The NICE Round Table Meeting to be postponed to October with the Royal Colleges' Prof Dame Carol Black as Chair

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https://threadreaderapp.com/thread/...EIWuDb8ueI-VebcBDqMLYw9IA1cmOqTo15-GcVIrV7unw


Dr Keith Gerarhty has unearthed troubling information about Prof Dame Carol Black.

She has worked closely with the PACE trial authors and is clearly not independent.

She needs to be replaced with someone who is!


Dr Keith Geraghty


Replying to
@keithgeraghty
@NICEComms
if the DWP part-funded the PACE trial, how could Carol Black a DWP advisor, who worked with Peter White, also a DWP advisor, be an ethical person to chair a roundtable debate on evidence generated from the PACE trial by Peter White? Ethics are important in science.

Replying to
@keithgeraghty
and
@NICEComms
FWIW Here is a slideshow presentation Dame Carol Black gave at Glasgow University in 2011. In Slide 6 'Turning the tap off' she likens giving welfare benefits to chronically sick & disabled people to a plague of cholera. https://gla.ac.uk/media/Media_210447_smxx.pdf





Dr Keith Geraghty
@keithgeraghty

·
7h

Waddell helped introduce the Biopsychosocial Approach to Long-term conditions that has been widely criticised and was a long-term paid advisor, so not really independent here. Using chronic backpain as a central focus. This married up with CFS to generate LongTermCond.s reforms

·
2h

Replying to
@keithgeraghty
and
@NICEComms
NICE are operating a Kangaroo Court!

She is so obviously a plant. The whole debacle is being played out in the most corrupt way imaginable. We pwme are just faceless pawns in their machinations.

It is very troubling and the appointment of someone like this gives no faith in process; they aren’t even pretending to accommodate pwme.

Replying to
@keithgeraghty
and
@NICEComms
To me, NICE's blatant disregarding of procedures points to possible political interference/the turning of a blind eye. There's something so incongruous about these developments, I believe they must be supported by those with higher authority than NICE itself. We'll find out.


I agree Tracey, there seems to be no other obvious explanation.
ra
@NICEComms
Thanks Keith. Carol Black couldn’t be closer to Mansel Aylward or intertwined with the BPS model unless she was his sister. I think ME charities should pull out and lawyer up. Its enough if NICE can‘t be transparent or invite half the charities and original representatives.

Dress for ME Charity Challenge
@


I feel the same Ali.
@ValeriEliotSmit
was spot on right from the beginning. As per usual. Why are we not listening to experienced advocates is beyond me and toothless main charities are part of the problem, when they should be standing with patients.

Replying to
@keithgeraghty
and
@NICEComms
Isn't there a single impartial person in the whole system to sort the mess some health professionals and institutions in the UK have created by refusing to follow
@NHS
and
@NICEComms
guidelines? Why won't professionals listen to the science and the patients
@DameCarolBlack
I rang NICE last week about which ME groups would be invited to the round table meeting on 17 September. I was promised a reply on this query and have not received a reply from NICE. Today I rang NICE wanting to ask questions about the chair of the round table meeting and other related issues. I was promised that I would receive a reply which has not materialised.
 

Countrygirl

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A message from ME Australia

ME Australia
15tSponssornchlefd ·

Opinion and recommendations on the UK’s NICE Round Table - Andrew James Bretherton
September 2021

The current NICE debacle and extraordinary deviation from normal procedure and published protocol is evidence of institutionalised discrimination by large sections of the UK medical establishment. That the ME patient group should be treated completely differently from all other diseases, in a manner that’s at odds with clear and growing scientific knowledge, is incredibly discriminatory and thus unlawful. That this behaviour is accepted unchallenged shows that such discrimination against the ME patient group is systemic, normalised and habitual in the UK.

There is NO legitimate reason for any further discussion before publication of guidelines which have been formulated through a proper scientific review process. Where appropriate, discussions can be held with frontline organisations around implementation of the guidance once they are published, and to guide professionals and frontline services on the lawful discharge of their duties.
ME patients are now being held hostage and forced to participate in a highly opaque Round Table process of dubious purpose, with publication of the guidelines conditional upon it. ME patients are rightfully concerned that a less than satisfactory outcome will be rubber stamped by this process, attached to arbitrary and false claims that patients had been “listened to”.

If this is not NICE’s intention, NICE will thus need to provide for a fair and transparent process. A fair and transparent Round Table process would set out all of the following in a publicly available published protocol:
1. A transparent overview, structure and documentation. The published protocol would provide:
o The reasons for and purpose of the meeting.
o Any objections or concerns to be discussed.
o A well defined structure to the meeting.
o The meeting to be recorded on video and this video to be made public afterwards.
2. Fair agenda setting.

Agenda items to be submitted by both sides ahead of time and listed. No agenda items not submitted in advance and listed in the published protocol may be discussed. Any agenda items rejected to also be listed in the published protocol, with explanations as to why they are rejected.

3. Fair representation.
Information on who is invited and why they are chosen and who they are representing. A roundtable that has majority attendance of the BPS school and GET/CBT clinics cannot be relied upon as being impartial or representative of ME patients

4. Fair adjudication.
The chair of the meeting or adjudicator is to have had no prior links to the psychosocial narrative of illness in ME, or there related research or treatments, nor should they have any conflicts of interest that could be tied to financial or economic outcomes. For example they must not have had any previous ties to insurance companies, “fatigue clinics” or government agencies like the department of work and pensions (DWP).

They must also be in line with the known pathophysiology of ME and the findings of NICE’s completed scientific review. This appointment must be agreed by those representing ME patients. Information on how this person is a legitimate, non bais and impartial choice to be provided.

5. Reasonable adjustments to enable meaningful participation from the patient community.
i) Stakeholders who cannot attend in person to be allowed to attend remotely.
ii) Accessibility requirements for stakeholder organisations being represented by people with ME, either in person or remotely, to each be allowed to send two representatives, to help compensate for the cognitive impairments of ME, which include slow processing speed, poor memory and concentration, and limited cognitive stamina.
iii) Pacing requirements for people with ME must be allocated. the opportunity for breaks in proceedings and facilities for rest to be provided as required by ME patients who are attending.
NICE is now the outlier on the global scientific stage:

 The CDC has removed GET/CBT: http://bit.ly/CDCme-cfsHP

 The Mayo Clinic has removed GET/CBT, one week after NICE’s high profile “pause”:
https://doi.org/10.1016/j.mayocp.2021.07.004

 In the week of the “pause”, the International Association for CFS/ME (IACFS/ME) held its conference, discussing the latest biomedical science in the field.

 Ron Davis, Nobel laureate and Chair of OMF Scientific Advisory Board, comments on NICE’s reasoning and credibility:
https://www.omf.ngo/ron-davis-issues-a-statement-on-the.../

 Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome by Anthony Komaroff of Harvard Medical School:
https://jamanetwork.com/jou.../jama/article-abstract/2737854

 Diagnosing and Treating MYALGIC ENCEPHALOMYELITIS/ CHRONIC FATIGUE SYNDROME (ME/CFS) by the U.S. ME/CFS Clinician Coalition:
https://y9ukb3xpraw1vtswp2e7ia6u-wpengine.netdna-ssl.com/...

 The Bateman Horne Centre:
https://batemanhornecenter.org/education/me-cfs/
If NICE capitulates to vested interests and throws out its own scientific review, it:

 Chooses discrimination and ableism over science.

 Makes a public statement that its scientific review processes means nothing.

 Raises questions even on the point of its existence.

 Feeds into doctors with ME (DwME) call to have it subsumed into the MHRA, in order that proper safety standards will be applied to non-pharmacological therapies from now on.
https://doctorswith.me/public-letter-to-dhsc-mhra-hoc.../
If NICE knowingly publishes unlawful guidance that contradicts the science, for the safety of patients clinicians and practitioners must ignore them and practice on the right side of the law. There is now sufficient scientific knowledge, alternative compliant guidelines, and educational resources that are now available to enable them to do so.

(This article was written with help via a support worker and advice from various ME Advocates in Australia and the UK)
 

Countrygirl

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Has anybody gone to the Press with this latest information? Recently a Times reporter did an excellent piece in support of ME patients but I don't remember his name? I am sure he would be very interested to hear of this latest disgusting finding but to be honest nothing surprises me anymore especially if it is linked to a Government body.

Pam
Yes, we have one excellent journalist interested, but I don't know if he can cover this story in time. He is going to cover another ME topic soon.
 

Countrygirl

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Just curious from the other side of the pond... Why is no one going to the press or their MP about this? Seems like aa scandal the press might jump all over given the emerging overlap between long COVID and ME.
Lots of people have written to their MP but they are just replying with a standard letter.

Our main journalist is out of action at the moment.
 

Countrygirl

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Question in the House of Commons about publication of the NICE Guideline: ....
'Fleur Anderson
Labour
Putney
To ask the Secretary of State for Health and Social Care, if he will ensure that NICE publishes the ME/CFS Guidelines in their current form to help prevent harm from Graded Exercise Therapy.
(Due for answer in 5 days (by 14 September 2021)
 
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I have just had it confirmed that the meeting has been postponed to October.

Also Prof Dame Carol Black......NICE's 'independent chair'....(!!!).....was chosen by the Royal Colleges.
What a surprise. The ME community needs to challenge her choice as chair. I have tried emailing/calling NICE and they won't respond to me. Plus I have written to Forward ME and ME Action about the round table and received no response. These groups are supposed to represent people with ME not hold cosy chats with the establishment behind the community's back. Invest In ME being excluded from the meeting says it all.
When anyone finds the venue for the meeting please let me know. There should be a protest outside.
History shows time and again that you don't get reforms out of power structures by cosying up to them.
 
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I think this is all going on partly because the status quo is extremely right wing and hostile towards anyone who's vulnerable, poor, or sick. We're all wasters in their eyes - or people who deserve to be let loose. Can't see too much changing unless the head of the snake got chopped.

As for legal remedial action we just started to crowdfund for an independent legal council around this issue, however funds were not exactly rolling in last time I checked and even if we did get the funds, I am not sure we would get far without a big hitter. Like a conservative MP backbencher - even that might not do it saying something. Labour MP's are ignored, so it's a bit trivial if they get involved.

I'd love parliament to prove me wrong, but things are really bad in the UK politically, America might have it's problems but it's much worse over here.
 
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I think this is all going on partly because the status quo is extremely right wing and hostile towards anyone who's vulnerable, poor, or sick. We're all wasters in their eyes - or people who deserve to be let loose. Can't see too much changing unless the head of the snake got chopped.

As for legal remedial action we just started to crowdfund for an independent legal council around this issue, however funds were not exactly rolling in last time I checked and even if we did get the funds, I am not sure we would get far without a big hitter. Like a conservative MP backbencher - even that might not do it saying something. Labour MP's are ignored, so it's a bit trivial if they get involved.

I'd love parliament to prove me wrong, but things are really bad in the UK politically, America might have it's problems but it's much worse over here.
Thank you for summing up the UK situation so well. As bad as things seem I do take comfort from the following quote from Margaret Meade. All we can do is keep fighting:
“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”
― Margaret Mead