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

Countrygirl

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The NICE Round Table is to be held on Friday 17th September.

The 'independent chair' is Prof Dame Carol Black.

Note her work for the DWP and views of illness and work.

https://en.wikipedia.org/wiki/Carol...uVojZZB5hw0oaEgLagqi7wZ6s_SogLl9jC0skD2qk0O8c

Although this is not certain, it is believed that ESTHER CRAWLEY (considered to be a/the main person who was responsible for blocking the publication), or a mouthpiece on her behalf, will be representing the BPS cabal. It is also thought that ALISTAIR MILLER of the Liverpool Clinic (now retired) may also be a representative.

The whole process appears to be very secretive.

EDITED: The meeting has been postponed to October,


 
Last edited:
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The NICE Round Table is to be held on Friday 17th September.

The 'independent chair' is Prof Dame Carol Black.

Note her work for the DWP and views of illness and work.

https://en.wikipedia.org/wiki/Carol...uVojZZB5hw0oaEgLagqi7wZ6s_SogLl9jC0skD2qk0O8c

This is the information I was given this morning which came from the Forward-ME meeting.

Although this is not certain, it is believed that ESTHER CRAWLEY (considered to be a/the main person who was responsible for blocking the publication), or a mouthpiece on her behalf, will be representing the BPS cabal. It is also thought that ALISTAIR MILLER of the Liverpool Clinic (now retired) may also be a representative.

The whole process appears to be very secretive.


I have read the wikipedia entry on the 'independent' chair of the round table meeting. Carol Black's views are very reactionary and totally in tune with the current government with its attitude towards the undeserving poor. This all bodes ill for a positive outcome from this meeting.
Who will represent the ME community at this meeting? I hope that it isn't just left to the Forward ME Group. It is not elected by the ME community and does not represent the diversity of opinion within the ME community.
Does anyone know where this meeting will be held? There should be a protest outside.
 

Countrygirl

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I have read the wikipedia entry on the 'independent' chair of the round table meeting. Carol Black's views are very reactionary and totally in tune with the current government with its attitude towards the undeserving poor. This all bodes ill for a positive outcome from this meeting.
Who will represent the ME community at this meeting? I hope that it isn't just left to the Forward ME Group. It is not elected by the ME community and does not represent the diversity of opinion within the ME community.
Does anyone know where this meeting will be held? There should be a protest outside.
We know that Invest in ME has been denied a seat as have the parents of children with ME,

The MEA , Forward ME, and S4ME forum have been invited.

Dr Weir has not been included.

Invest has written a strong letter about their exclusion today.
 

Countrygirl

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Invest in ME have not been invited to the Round Table. Here is their letter to NICE dated today.
NICE and Transparency
"All types of NICE guidance are developed using the best available evidence, and by involving stakeholders in a transparent and collaborative manner."
The guidelines manual - NICE guidance
Transparency engenders trust.


Moreover, a lack of transparency results in distrust.

Invest in ME Research wrote to the NICE CEO and the Director for Guidelines Development in August after NICE "paused" the release of the final guideline a matter of hours before they were due to be published [1].
We are yet to receive a full reply.



However, we are learning - not from NICE but via concerns passed to us from supporters and via social media - that preferred groups have been invited to their planned roundtable with no consultation with guidelines development stakeholders and no information given to patients.

We have stated before that the NICE guidelines development process should be transparent.
We have sent the following letter to the NICE CEO asking pertinent questions regarding this continuing fiasco.

Professor Gillian Leng CBE, Chief Executive, NICE
Cc:
Dr Paul Chrisp, director of the Centre for Guidelines
8 September 2021

Lack of transparency from NICE Regarding Publication of Updated Guideline on Diagnosis and Management of ME/CFS
Dear Professor Leng,
Thank you for your brief reply to our letter of 20th August.
You stated that “Bringing interested parties together will provide an opportunity to talk everyone through the approach that has been taken,”
Yet we now understand that NICE has already chosen which interested parties will attend your roundtable.
This information was not obtained from NICE but from information provided via social media.

It seems that you are not providing us and nor, apparently, most other stakeholders with this “opportunity to talk” and neither are you attempting to bring interested parties together.
Instead, there has been no discussion amongst stakeholders – other than those secret discussions that seem to have been going on behind the scenes since August.

There should not be a different approach being exhibited toward different “categories” of stakeholders – that includes invitations to roundtable meetings as well as behind the scenes discussions that lack any transparency.

Likewise, the prioritisation of responses to letters to NICE (from stakeholders and others) on this topic should not be based on anything other than a fair and proper policy used in answering these requests and with due process followed.
There should be no favoured parties!

We have stated before that the NICE guidelines development process should be transparent.
Your organisation has shown little transparency in its decision-making and covert discussions since you decided to pause the publication of the final guidelines, without all stakeholders being consulted.

You now have selected your favoured groups from your chosen definition of the “ME community” to attend your roundtable in order to legitimise this whole process – none of whom represent us or, from communications received, many of our supporters.

There is still no clarity or justification for NICE's pause in publishing the guidelines after the development process had been completed.

You have still not supplied any detail on what this "clear the air" roundtable is meant to achieve - let alone whether it follows due process or not.

All stakeholders have received responses to their comments during the guidelines development phase and the due process so there is no need for further debate.

You have still not answered in detail our earlier email to you.
You have still not announced officially which interested parties you have chosen to attend your roundtable – but instead you have allowed patients (and stakeholders) to pick up scraps of information via the internet - causing anxiety to some and speculation amongst others.
This is no way for NICE to behave.

So please may we receive answers to these questions - in order to begin to operate in a transparent manner?
Why have you chosen not to communicate what is happening to all stakeholders, via standard procedures, and at the same time?


Why have you not notified all stakeholders at the same time which groups or individuals you have selected to participate in this roundtable?

Who is deciding which stakeholders are to be present at your roundtable?

How have you nominated those stakeholders whom you have selected to be present at your roundtable?
What criteria and what process have you used to select the stakeholders who would participate in your roundtable?

Did this selection process follow standard NICE procedures?

How can you be sure that all interests are being represented at your roundtable if all of the existing stakeholders have not been contacted for their views beforehand?

Can you guarantee that no individuals who resigned or were "dismissed" from the guidelines working group will be allowed any role in future discussions of these guidelines, and certainly not in your planned roundtable?

Please can you inform us what discussions have been going on behind the scenes with NICE since the embargoed guidelines were distributed to stakeholders, through the period when the decision was made to pause the publication, and up to the present day - and with which individuals or groups?

Please can you explain what is the full intent of the roundtable?

If the intent of the roundtable is merely to provide an opportunity to talk everyone through the approach that has been taken, with the aim of ensuring support for the implementation of the already-developed and approved guidelines, then please can you explain to us how this is legitimate and how it follows NICE guidelines development protocols?

Why can this hastily arranged and irregular roundtable not be performed after the final guidelines are published?

We should remind NICE that no such opportunity was given to patients following the final review of the CG53 guidelines prior to their publication in 2007.

Instead, patients were forced to find the resources in order to take NICE to a judicial review to remove the harmful recommendations.

As Invest in ME Research is not amongst the interested parties whom you have selected to be invited to your roundtable then, as a stakeholder in these guidelines, please can we receive the agenda for this roundtable meeting prior to the meeting?

In fact, please can this agenda be made public in order that all patients can be appraised of the intentions with your plans?

Please can you inform us which stakeholders you have decided to invite to this roundtable?
Please can you inform us of the date and time of this roundtable?

The phrase in your earlier brief reply to us - "We will progress this as quickly as possible." - belies the fact that the date has seemingly already been set for this roundtable meeting. Again, only the chosen few seem to have been made aware.

So much for openness!

Please will you make arrangements for this roundtable to be conducted online by making it a virtual meeting with all stakeholders allowed to listen in?

There is no reason why all stakeholders could not listen, even if you have only chosen your preferred interested parties to be able to speak.

Taking this request further then why can this roundtable not be made open to all patients so that they can listen to the proceedings as they occur and ensure that your chosen "representatives" are truly representing their interests?

If you deny ordinary patients and other stakeholders the opportunity from listening to this roundtable then can you confirm that this meeting will be minuted and that the full minutes will be made available to the public immediately after the meeting?

Without this information being known it leads to unnecessary and unhelpful speculation. One is left to speculate what is really going on behind the scenes - from both sides of the artificial "balance" that your organisation created when the guidelines development group was set up.

Whichever "side" one takes on this "balance" of opinions it is a false premise to think that all can be resolved by a lack of transparency.

It is patients and their families that matter and it is the interests of patients that should be at the heart of all guidelines development.

Yet the lack of scrutiny that NICE is enforcing with its latest actions inevitably results in the certainty that it is the patients who will be the last to know anything,
Yours Sincerely,

The Chair and Board of Invest in ME Research
References:
Letter to NICE CEO from Invest in ME Research
 
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This entire round table charade is farcical. The charities should have availed themselves of all available administrative or civil remedies authorized under governing statutes/regulations. Attending this show trial with even a modicum of good faith further dignifies an ignoble and dastardly process.

What do the charities and pro-guideline stakeholders envision emanating from this gathering. Will Michael Sharpe dramatically enter the fray and exclaim, “I was wrong! PACE is a travesty and should be immediately discarded!” I don’t mean to be flippant, but the BPS cretins forged a career on the psychosomatic undergirding of ME. They’ll never capitulate, and with what appears to be a favorably disposed chair, why would they?

This debacle, and the attendance of ME advocacy organizations, will only legitimize an unprecedented and illicit process. NICE’s opacity throughout the round table formulation only bolsters my arguments.

Hope is alive. We have dedicated and learned scholars entering the ME arena, but I’m afraid the governmental institutions that have long denigrated us are a lost cause.

Why allow them to fake further sport of a marginalized and stigmatized group? Why participate in a fait accompli?
 
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I agree with you 100%. They should have had nothing to do with the round table nonsense. Leave the circus to the clowns.
I just can’t fathom the rationale for attending, but I can envision the participation of our representatives being cited as a pretext for affording us due process.

It’s like allowing a child to pretend that their driving a car. A sense of momentary importance for the child while everyone else enjoys a nice chuckle. The fact that patient organizations appear so credulous is alarming. How did they not see this coming?
 
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Why allow them to fake further sport of a marginalized and stigmatized group? Why participate in a fait accompli?
sometimes, you show up to Bear Witness. I"d enjoy just glaring at them from my chair, if i could attend.

Maybe bring a voodoo doll with. And some long hairpins. And as the agenda keeps unfolding, keep JABBING Them pins into the effigy.
 

seamyb

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sometimes, you show up to Bear Witness. I"d enjoy just glaring at them from my chair, if i could attend.

Maybe bring a voodoo doll with. And some long hairpins. And as the agenda keeps unfolding, keep JABBING Them pins into the effigy.
Does pain from a voodoo doll show up on a blood test? Because that would be perfect if not. Maybe keep the doll awake for several weeks in a row running it around relentlessly. Drown it every so often so the air hunger comes out of nowhere.

But yea, I feel certain people have to attend this. It's ammunition if they don't. They'll cry to the wider public who haven't been following, that the ME advocates didn't even bother to turn up to a big official knights of the round table event and then complained about it.

Aw I wish voodoo was a thing.
 

BrightCandle

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Was inevitable after NICE caved to vested interests, it follows on 3 years of further delay and trying desperately not to do anything to help ME patients. I am not surprised given the cancellation of release of the guidance that now the process is corrupted to the point of useless. The NHS and NICE just aren't public institutions following the science anymore, haven't been for quite a while.
 
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This entire round table charade is farcical. The charities should have availed themselves of all available administrative or civil remedies authorized under governing statutes/regulations. Attending this show trial with even a modicum of good faith further dignifies an ignoble and dastardly process.

What do the charities and pro-guideline stakeholders envision emanating from this gathering. Will Michael Sharpe dramatically enter the fray and exclaim, “I was wrong! PACE is a travesty and should be immediately discarded!” I don’t mean to be flippant, but the BPS cretins forged a career on the psychosomatic undergirding of ME. They’ll never capitulate, and with what appears to be a favorably disposed chair, why would they?

This debacle, and the attendance of ME advocacy organizations, will only legitimize an unprecedented and illicit process. NICE’s opacity throughout the round table formulation only bolsters my arguments.

Hope is alive. We have dedicated and learned scholars entering the ME arena, but I’m afraid the governmental institutions that have long denigrated us are a lost cause.

Why allow them to fake further sport of a marginalized and stigmatized group? Why participate in a fait accompli?
Forward ME and the other invited groups do not speak for the entire ME community. How can we trust them to make decisions on behalf of the whole ME community? I am very suspicious of the cosy chats that Forward ME have been having with NICE. Why have Forward ME not informed the rest of the community what has transpired during these cosy chats? The whole round table meeting is a farce designed to give legitimacy to the actions of NICE which has consistently been a bad actor over many years when it comes to dealing with ME. I have no faith that any positive outcome will arise from this meeting.
 
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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.
I wrote to my MP and have heard nothing from him. But I agree that people who are well enough should write to their MPs about this issue.
 

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Countrygirl

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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
 

bertiedog

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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