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

BrightCandle

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Once it become clear that the process was completely corrupted she was left with the choice of the guidelines never being released or releasing them herself. I would have done the same thing, its pretty clear NICE and the NHS is broken beyond repair so may as well join the protestors at this point. You have to pick a side now, glad she chose the patients, unhappy ForwardME hasn't.
 
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I received the following reply from NICE to my enquiry regarding who would be invited to the round table meeting in October. I fired a reply straight back with 8 questions for NICE to answer. I do not hold any hope that the answers will be any more forthcoming.


"Thank you for your interest in the round table event we are holding in October 2021. Our aim is to find a way forward following the pause to publication of our new guideline on the diagnosis and management of myalgic encephalomyelitis (ME)/chronic fatigue syndrome.



We know there is significant interest from a range of different groups. To allow the independent chair to facilitate an effective discussion, there are limited places available for participants. This being the case, we have invited representatives from a range of professional groups, national patient organisations and charities representing a variety of perspectives including those of adults, children, people with severe ME, an understanding of service delivery and an interest in research.


We are sorry that we aren’t able to accommodate all those who wish to attend the event.


We will make the minutes of the meeting, including those in attendance, publicly available after the discussion.



Kind regards

Janet
Communications Executive

National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
Tel: 0300 323 0141 | Fax: 0300 323 0149

Web: http://nice.org.uk





Communications Executive

National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
Tel: 0300 323 0141 | Fax: 0300 323 0149

Web: http://nice.org.uk
 
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I wrote to Invest In ME Research about the reply that I received from NICE. Invest In ME sent me a reply pointing out that:

"It looks like NICE is making it up as it goes.'' Spot on. How else can you explain the round table meeting being postponed from September to October with no explanation?

"We have received no response to our emails/''

No surprise there. NICE's actions are shrouded in secrecy yet this is a tax payer funded organisation that should be accountable to the public.

"Meanwhile the secrecy and the silence continues – and is allowed to continue due to compliant organisations.''

Spot on again. Why did ME Action and the ME Association not support the recent protest outside NICE HQ organised by Chronic Collaboration? It would appear that there have been cosy private chats going on between NICE and Forward ME of which they are both part.

" There need be no reason for his roundtable and NICE has breached its own guidelines development regulations by its actions,''

The ME community needs to consider a boycott of this sham event. Participation in the round table gives legitimacy to an event that should not be taking place. We need to find ways of challenging the fact that NICE has breached its own guidelines development regulations by its actions.
 

BrightCandle

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I got a response from NICE to my complaint but it really doesn't add anything of use and its just a generic response, they haven't addressed my points at all. Likely just a standard mail merge that everyone who complained to them is going to get.

Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding the pause to the publication of our new guideline on the diagnosis and management of myalgic encephalomyelitis (ME)/chronic fatigue syndrome.

We are aware that our decision to pause publication has been difficult for people with ME/CFS and their families. However, we really want to ensure that the guideline makes a difference for patients, and unfortunately a pause to publication was necessary in light of feedback that we received from some key groups.

Changing clinical practice and clinical attitudes is one of the most challenging parts of our role. To make a real difference, guidelines need to be supported by all relevant stakeholders, so taking some extra time now to bring everyone together is an important step.

A roundtable discussion will be held on the 18th of October to better understand the issues that were raised, demonstrate the robust way the guideline has been developed, and determine how we can gain support for the guideline to ensure effective implementation. The meeting will have an independent chair (Professor Dame Carol Black) and will include representatives from patient organisations and charities, relevant professional societies and from NHS England and NHS Improvement, NICE and the guideline committee. NICE will release the agenda ahead of the meeting and the minutes including those in attendance, will be published afterwards.

I would like to assure you that we recognise the importance of the new guideline for patients and their families, and we are committed to finding a way forward to publish a guideline that will have the support of people living with ME/CFS, the people who care for them and the professionals who treat them.
 

Pyrrhus

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Good news - someone is taking legal action against NICE over the ME guidelines fiasco.
See the article below:
https://www.thecanary.co/uk/analysi...ow-face-court-over-the-me-guidelines-debacle/
Yes, this notable development has generated a few discussions here:

NICE is facing a legal challenge over its ME guidelines delay
https://forums.phoenixrising.me/thr...challenge-over-its-me-guidelines-delay.85721/

SCOTT-MONTCRIEFF, SOLICITORS, LONDON, SERVE NICE WITH A LETTER DEMANDING RELEASE OF GUIDELINES
https://forums.phoenixrising.me/thr...letter-demanding-release-of-guidelines.85735/

ME patient goes to court in row over exercise therapy for chronic fatigue syndrome
https://forums.phoenixrising.me/thr...e-therapy-for-chronic-fatigue-syndrome.85798/
 
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Forward ME have just released this statement.
Personally, I don't understand what they think they will achieve by attending this meeting. A more suitable response would be to boycott this sham event.
I also don't like the way that Forward ME assumes that it speaks for the ME community in the UK which it definitely does not.
There has been a complete lack of transparency from Forward ME regarding the cosy chats it has been having behind 'closed doors' with NICE.
I do hope that Chronic Collaboration holds a protest outside the round table event. I will push myself to try attend if a protest is held.

https://forward-me.co.uk/news-updates/

"Forward ME and our members want to thank the many people with ME, Doctors and researchers who have contacted us to share concerns and frustrations around the delays to publication of the new NICE guidelines on ME.
Forward-ME has been invited to the round table, and the following organisations will also attend individually: ME-Association, Action for ME, #ME-Action, Science for ME, ME Research UK, the 25% group, Tymes Trust, ME Trust.
Preparations for the round table mirror the issues raised by the ME community across social media. The charities are grateful for all the feedback we have received.
The round table is an opportunity to ensure the rigorous work of the NICE guideline committee is understood by care providers.
We are not attending to discuss changes.
All Forward-ME members recognise the significance of the recommendations in the new guideline.
The guideline has been produced and approved in accordance with NICE’s rigorous procedures, and should be published.
We share the frustrations over the delay, and are working to achieve urgent publication
We look forward to updating the ME community in the days following the round table, and we hope this is accompanied by swift publication.''
 
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What a load of cobblers.
I would use much stronger language to describe the lies and duplicity going on here.

I hope that the legal case makes progress as the government has no interest in doing anything about this ongoing scandal.

As Invest In ME have noted the new guideline only takes us back to the pre 2007 situation whereby GET/CBT were not recommended treatments.

Even if the new guideline is published unamended by the BPS lobby it still will have little positive impact on improving the quality of life for pwME.

In austerity Britain we have a heartless Tory government that is hellbent on privatising the entire NHS, for the benefit of big business. I have no hope that extra resources will put into the treatment/research of ME in any meaningful way.
 

livinglighter

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In austerity Britain we have a heartless Tory government that is hellbent on privatising the entire NHS, for the benefit of big business. I have no hope that extra resources will put into the treatment/research of ME in any meaningful way.
Agreed, and a strategy for dealing with the cuts to NHS funding is picking off the conditions they can get away with not adequately funding!
 

BrightCandle

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I realised two years ago that the NHS and health care of this country was only ever going to be a hindrance to me. Its more likely in the next ten years (assuming I survive that long) the state will round me up and put me in a gas chamber rather than pursue research into helping me. There is zero reason to believe even the release of these guidelines will do anything to help, they are as safe as can be to release since they offer nothing to patients at all beyond not being actively tortured in a specific way. All this for something that really isn't going to help at all, all this just proves the problem is and always has been widespread systemic prejudice and that isn't going away because NICE issued some paper.
 
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It is time to call out those organisations that are complicit in this sham meeting next Monday. And yes I am calling out all these self appointed spokespeople for the ME community who have been having cosy closed door meetings with NICE: ME Action, the ME Association, Forward ME.

2 days ago Invest In ME produced an excellent and absolutely damning critique of NICE and the above mentioned organisations:

http://www.investinme.org/Response-to-NICE-Sep2021-02.shtml

"As for the long awaited agenda for this secret roundtable meeting?
The agenda that has been published demonstrates the fallacy behind NICE’s commentary and reasoning regarding the pause.

NICE's recent statement carried this from Professor Gillian Leng - CEO of NICE
We are holding this roundtable to explain how the guideline was developed and the rationale behind the recommendations made and to hear and understand the concerns that have been raised.

As we have mentioned before this has already been done – for all stakeholders – during the evaluation of the draft guidelines.

The agenda for the meeting is as follows:

  1. Introduction and rules of the meeting – Dame Carol Black
  2. Guideline production at NICE – Dr Paul Chrisp, director of the Centre for Guidelines at NICE
  3. Aim of the Myalgic encephalomyelitis/chronic fatigue syndrome: diagnosis and management guideline – Dr Peter Barry, chair of the ME/CFS guideline committee
  4. Discussion of issues raised: diagnosis, graded exercise therapy, children and young people, and cognitive behaviour therapy.
  5. Summary – Dame Carol Black.
Points 1 and 2 are irrelevant - there only to serve a structure for this illicit meeting..

Point 3 is obvious to all stakeholders – it was documented in the guidelines development process.

And so we get to the heart of all of this deception – point 4 – discussing further the removal of GET as a recommended treatment and the slight downplaying of the role of CBT.
This is why NICE has paused the guidelines and scheduled this meeting.

Yet Leng has written to us that this secret roundtable for the chosen few is not a decision-making meeting – so what is the point of discussing further?

All stakeholders have had this opportunity during the draft guidelines review phase.

The guidelines development process was carried out and however many flaws there are still in the guidelines, as reviewed and commented on by Invest in ME Research and other stakeholders, that project achieved its goal according to the process that all stakeholders were aware of.

So we have a secret meeting organised, already described by the CEO of NICE as not being a "decision-making forum", convened for no purpose other than to placate one set of organisations who can see their golden eggs of GET and, to some extent, CBT being removed from the nest.

Unless, that is, there are plans to change the guidelines - as Professor Leng has stated "Any subsequent decisions will be made by NICE’s guidance executive.".

Any changes now would, of course, invalidate the whole development process and nullify the final guidelines.

It seems unlikely that the legal objections being constructed by lawyer Peter Dodds will prevent this secret roundtable from occurring, given the time remaining.
NICE has set this up with the inclusion of their favoured parties.
Those parties include some who issue statements that that they are ""not attending to discuss changes”.
So one might ask what are they attending for? To improve the guidelines!?
While claiming to want to have the guidelines published immediately they easily comply to NICE's wishes, hold secret behind the scenes meetings away from the view of patients and contribute to the lack of transparency in what is happening.
All this has served the attempts to legitimise this pause in publication, and the events following that pause, and merely adds to the impression that the only reason to wish to attend this roundtable is to bathe in the glow of self importance.
Graciously promising to update the ME community in the days following their roundtable means very little.
The deed is done already.

What hypocrisy!
Such a high price to pay for an entry ticket to this meeting - and the price of that entry ticket may yet be passed on to patients in the long run.

But well played NICE!

Meanwhile, the old deleterious recommendations from the 2007 guidelines continue to circle like vultures over any newly diagnosed patients - waiting to inflict more harm.''
 

Inara

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Recent developments indicate to me that GET/CBT will remain. I am, as I confess, pretty negative about this. It seems that, indeed, certain powers intervened.

I honestly never thought anything will change without substantial pressure on those in power. That's always been so in history, we are no different today.
Ideally, it could be achieved to get one of the perpetrators into prison or sth. comparable. It's a dream/vision of course, but sth. like that would have a deterrent effect.

If so, I can only hope people storm the courts by handing in legal complaints one after the other. For maltreatment, GET/CBT must have been applied and led to provable harm. The other possibility is going against someone or sth. (like DWP) that wants to force GET/CBT on someone as a prerequisite for getting financial help. This path, however, will be very hard, and it may be unsuccessful. Especially "privileged" people, i.e. with secure finances, can go this way because they don't have an existential pressure.

There may be other possibilities (like handing in complaints to UN-OHCHR). I hope at least some charities will choose legal processes and/or will start funding individual legal cases.

It's about numbers - we need high numbers.
 
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I have a bad feeling that the medical establishment will get to keep some reference to GET in the new guideline hence their actions over the last 2 months. CBT will obviously remain maybe in a slightly diluted form. For me the new guideline does not fundamentally change anything. There will still be a dearth of funding for the treatment/research into ME. I expect the widespread stigma that many pwME experince from both the public/media and medical profession to continue. I don't expect the DWP to change its punitive stance towards pwME to change. I made some FOI requests to the DWP which reveal there is a high failure rate for pwME applying for disability benefits. What a surprise! I am researching an article on this.

Dr. Ian Gibson, former Labour MP, in his book Science, Politics and ME ponders this question why there has been so much resistance from the medical and legal professions along with government departments to the biomedical approach to ME. The elite professionals who control the Royal Societies, DWP, Department of Health, media organisations have certain doctrines that fit in with their world view. They hold the purse strings and policy decision making in their hands. These very conservative people hate having their dogmas challenged. (See my recent interview with Dr.William Weir on this issue) . To compound matters the 2 main political parties have also thrown up blocks and failed to take up the question of how to develop better treatment and cures.

I agree with you history shows time and again that ordinary people ONLY win improvements in their lives through concerted collective pressure being brought to bear on the aforementioned elites. It is a time to rage and a time to take action on a multitude of fronts. An apolitical stance gets you no where or worse still you end up having cosy chats behind closed doors with the elites who have neglected the community you claim to represent for so long.

I will finish with a quote from Ian Gibson's book that perfectly sums our dilemma and a way forward:

"Government after government, party after party have failed to listen and continue to reorganise the NHS in the UK woefully in the direction of privatisation of government control.

In such a system how could a disease like ME be treated seriously when it is claimed that the symptoms are the fault of the individual or are being fabricated?

Politicians , as the playright David Hare says, 'have become little more than go betweeners , their principal function is to hand over tax payers assets, always in car boot sales, and always at way less than market value.

Many now believe that the movement to change will only come from below, so do we.''