S4ME Letter to Nice Concerning Chris Burton

This is a letter we sent from S4ME to NICE as discussed in a voting thread for those members who have posted enough to have voting rights.

Sorry I forgot to post it here earlier

 

Reply from Peter Barry

 

MODS- am unsure if I am posting this on the right thread. Please move to another thread if more appropriate.

Our MP (Sir Edward Davey- libdem) has been very supportive of our concerns about fairness in the composition of the Nice Guidelines Development Group. When we wrote a detailed letter to Nice and received only a template response, we sought his help and he wrote to Sir Andrew on our behalf. This is the response he received from Sir Andrew.


“Dear Mr Davey,

Thank you for your email.

I am aware that people living with ME/CFS are concerned about the appointments we have made to our guideline committee. Because of this concern, I have reviewed the membership and it has also been considered by the Senior Management Team at NICE. This unusual level scrutiny is an indication of the importance we attach to ensuring that we have a balanced committee in what I acknowledge is a contentious area. We have been careful to appoint to the committee, through open advertisement, people who hold different views about the possible causes and treatment for the condition, together with those who have not expressed a particular position. We expect them all to consider the evidence objectively and to consider carefully and respectfully the views put forward by their fellow members and the patient and clinical experts who have been invited to speak to them.

I prepared the response to those to those who have written to NICE on this matter and which you have seen. I’m afraid that I’m not in a position to add to what I have said in that response. We need to give the committee the chance to demonstrate that it can consider the written and oral evidence in accordance with our published methods, consult with a genuine intention of responding to reasoned argument and then formulate recommendations that accurately reflect what we know about the condition and the treatments that can really make a difference to the people living with it.

Yours sincerely,

Andrew Dillon
Chief Executive
National Institute for Health and Care Excellence
10 Spring Gardens | London | SW1A 2BU | United Kingdom”


I am glad the Committee received “ unusual level scrutiny” by the Senior Management Team and Sir Andrew personally at Nice, and I hope they continue to do this in appointing the last ?3 members.

Sir Andrew states that the Group will “ consult with a genuine intention of responding to reasoned argument and then formulate recommendations that accurately reflect what we know about the condition and the treatments that can really make a difference to the people living with it.”

But the accepted ( emphasis on accepted) body of knowledge and treatments is with the discredited BPS school.

How is sense to come from this? What is accepted as known about the condition and the treatments provided is based on rubbish research. How is it going to play out?

 

Is there any good research on treatments that are symptomatic relief for some of the symptoms we experience? Perhaps those could be used as evidence.

 

I think everyone involved in this is aware that nothing is now accepted. The committee has to start afresh and look at the evidence. Received wisdom has no authority. Since something near half of the committee are sceptical about the evidence for anything much I cannot see how anyone can push anything through without the evidence being presented and minuted in a public document.

Sir Andrew says nothing about accepted evidence or what is accepted as known. If the received wisdom was considered adequate then there would never have been a review of the guidelines.

 

I think the general view is that symptomatic treatments follow general principles that do not relate specifically to ME so nothing specific needs to be put in an ME guideline.

If there is no evidence that is not a problem. The conclusion has to be that there is no evidence. That would not be in any way unusual.

 

I very much hope the whole Committee will start afresh and look at all the evidence including the harms perpetrated by GET, Workwell’s evidence etc but will this be the case? It’s not so long since Nice were saying they couldn’t consider evidence from outside the U.K. I’m pretty sure there is a statement somewhere that makes clear that is no longer the case.

But I am concerned about what has happened with Cochrane. It is all taking so long to make utterly clear what the status of the Cochrane review is.

And some of the comments on another thread about “ behind the scenes” influence are not comforting.

https://www.s4me.info/threads/nice-guidelines-topic-experts-and-the-behind-the-scenes.7985/

It isn’t hard to sometimes be positive but I find it hard to remain totally positive. Obviously I need even more CBT.

 

The fact that they appointed someone like Chris Burton, even after applying an "unusual level scrutiny", shows how broken the system is, and how desperately we need a more fundamental change to the way NICE works.

"We expect them all to consider the evidence objectively and to consider carefully and respectfully the views put forward by their fellow members and the patient and clinical experts who have been invited to speak to them."

Why are they foolish enough to expect that? They've included a PACE trial author, after seeing how the PACE authors examine the evidence and respond to the views of others.

"We need to give the committee the chance to demonstrate that it can consider the written and oral evidence in accordance with our published methods, consult with a genuine intention of responding to reasoned argument and then formulate recommendations that accurately reflect what we know about the condition and the treatments that can really make a difference to the people living with it."

I don't think we do need to give this committee that chance, but if they are given a chance and fail, what then?

 

We had a further response on this and I think its also useful to look at the response we had to taking the first letter to the NICE complaints review process which is here:
https://www.s4me.info/threads/s4me-...have-a-conflict-of-interest.6994/#post-154448
The response basically says they followed due process in reviewing conflicts of interest and I don't think the case would be considered differently here. The complaints process seems to check how they acted rather than the details.

 

I wasn't sure which thread to post this to. Chris Burton has written a chapter in a medical textbook
Persistent Physical Symptoms and Symptoms Without Apparent Disease

A lot of it can be read here:
https://books.google.ie/books?hl=en...=onepage&q="chronic fatigue syndrome"&f=false

 

"Apparent disease" is doing a lot of work here. Literally the same basis for labeling peptic ulcers psychosomatic. And the same thinking behind the initial rejection of the germ theory of disease. Also the god of the gaps: if I can't see it it doesn't exist and therefore it must be what I personally believe it to be.

Everything is not apparent until it is. This take is so lazy it developed bed sores. At some point it has to be considered violence to systematically refuse to properly fund research then turn around and promote wild-ass nonsense alternative assumptions as the best explanation we have because we haven't yet figured it out by underfunding the search for a solution. The result is death and suffering for tens of millions, after all. If that's not violence then we're using a different definition.