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Trial by Error: NICE Rejects My FOI Request

The National Institute for Health and Care Excellence, the U.K. organization that develops clinical guidelines for medical conditions, has rejected my freedom-of-information request for the names of the experts involved in the reassessment of the guidance for the illness it calls CFS/ME. This isn’t surprising, since the agency also recently rejected similar requests from the Countess of Mar and the ME Association. However, NICE’s response to the FOI request, which I received on Friday, contains some useful information and clarifies the decision-making process. I have included the NICE response below, but here are some key observations.

The 2007 guidance, called CG53, endorsed cognitive behavior therapy and graded exercise therapy as the treatments of choice. According to the FOI response, the surveillance team that drew up the recently published “consultation document,” which recommends no change in this guidance, includes four NICE staffers: a technical analyst, a technical adviser, a clinical adviser and an associate director. In developing their proposal, they consulted with seven “topic experts”–three psychiatrists, two neurologists, a pediatrician and a patient representative. The surveillance team’s provisional decision to leave the guidance as is triggered this month’s two-week period for receiving comments from stakeholders. The final call will now be made by a group of eight top NICE employees, collectively called the “guidance executive.” Among the eight are Sir Andrew Dillon, NICE’s chief executive; Mark Baker, director of the Centre for Clinical Practice; and communications director Jane Gizbert.
More at http://www.virology.ws/2017/07/31/trial-by-error-nice-rejects-my-foi-request/
 
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NICE said:
Given the volume and nature of the correspondence (enquiries, petitions, letters, activity on message boards, Freedom of Information requests) we have received to date we are concerned that the experts may be targeted individually by any campaign and that such activity would impact on experts’ wellbeing and on their and others’ willingness to contribute to the work of NICE in the future, especially when they are not part of the decision making body.

We can’t be certain that the release of the withheld information would put the individuals at risk but we consider that there is sufficient evidence to conclude that they would be singled out for harassment, intimidation and possibly threats of violence.
My comment:
It's simply outrageous that NICE is interpreting a large number of legal and civil inquiries to mean that their experts' "wellbeing" will be at risk, and even subject to threats and intimidation. They should be completely ashamed of themselves for even suggesting such a thing, and whoever wrote those disgusting accusations regarding patients should be looking for a new job.

I'm simply flabbergasted that those jerkwads would even say such a thing, and in a letter to an ME journalist, no less. I now have absolutely no faith in NICE - whoever is overseeing these things is utterly corrupt and completely uninterested in the patients they purport to serve.
 

Countrygirl

Senior Member
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UK
My best guess would be Chowdhury, from AfME. Anyone else would have presumably said something about it.
@Valentijn

I assumed the 'patient representative' is an actual patient. Am I wrong? I can only think of one who would fit the bill. If it a patient, could it be the group leader/chair of the ME group of which Esther Crawley is medical adviser ? I have the impression he would be a PACE supporter.
 
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Who is the patient representative on the PACE expert panel?

The NICE expert panel, not the PACE one? Could be almost anyone. I wonder if it's Mary Jane Willow, as one of the comments from the expert panel seemed to come from a patient representative, and was about children. She's been totally deferential to authority, and never shown any indication that she understands the problems with PACE, so would be ideal from the point of view of NICE.
 

user9876

Senior Member
Messages
4,556
My comment:


I'm simply flabbergasted that those jerkwads would even say such a thing, and in a letter to an ME journalist, no less. I now have absolutely no faith in NICE - whoever is overseeing these things is utterly corrupt and completely uninterested in the patients they purport to serve.

I view NICE's response basically accusing ME patients of being violent and about to physically attack experts as hate speech designed to stigmatize a minority group.

They clearly are not an impartial group.
 
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I view NICE's response basically accusing ME patients of being violent and about to physically attack experts as hate speech designed to stigmatize a minority group.

They clearly are not an impartial group.
Did anyone specific from NICE put their name on the letter? Virology's website is down currently, so I can't check. But I didn't notice any when I read it earlier.
 

user9876

Senior Member
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4,556
Did anyone specific from NICE put their name on the letter? Virology's website is down currently, so I can't check. But I didn't notice any when I read it earlier.

I wonder if an FoI for the evidence behind there claims would be a good idea. It is outrageous that a government organization should be stigmatizing patents but it also shows that we cannot expect anything from them. They clearly have an inbuild bias and hatred of ME patients.
 

Cinders66

Senior Member
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494
Of the 7 topic experts NICE consulted on whether to update the CFS guidelines , 3 were psychiatrists and one Is assumed to be the CBT/GET researcher/paediatrician Esther Crawley.

What next let bankers dominate the expert group on whether they should get higher bonuses, footballers decide their own wages and criminals put together their own juries?

We don't need names , that says it all. NICE hasn't moved on from the days when it classed CFS under both mental health and neurology. And we know how most uk neurologists view the illness and also how psychiatry approaches it.

This cannot be accepted given the modern understanding of it as multi system disease with a heavy immunological component and im surprised there hasn't been more discussion on how to push forward on this
 

ukxmrv

Senior Member
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4,413
Location
London
The NICE expert panel, not the PACE one? Could be almost anyone. I wonder if it's Mary Jane Willow, as one of the comments from the expert panel seemed to come from a patient representative, and was about children. She's been totally deferential to authority, and never shown any indication that she understands the problems with PACE, so would be ideal from the point of view of NICE.

It could be one of the existing GDG patient reps. There were originally 3 but Tania Harrison (BRAME) reigned leaving 2. I'm not naming the other two as I have no idea if they were asked to comment again or if NICE got someone else for the job.
 
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Learner1

Senior Member
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6,305
Location
Pacific Northwest
the surveillance team that drew up the recently published “consultation document,” which recommends no change in this guidance, includes four NICE staffers: a technical analyst, a technical adviser, a clinical adviser and an associate director. In developing their proposal, they consulted with seven “topic experts”–three psychiatrists, two neurologists, a pediatrician and a patient representative.
Therein lies your problem....

Why not advocate for immunologists, infectious disease specialists, and clinical nutritionists to be on the committee, and that they review the recent IOM and CDC info as well as that list of recent CFS research.

It seems that continuing to argue about PACE and your NICE guidelines is counterproductive. Can't you change the rules of the game?
 
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user9876

Senior Member
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4,556
When I finally read this I was quite shocked by the NICE reply.

They basically repeat the violent ME patient story to a journalist as an excuse for not being open. This is a story that aims to stigmatize and bring hatred to ME patients. So for a government body to be pushing this hate speech to a journalist is shocking.

Then the conflate free speech and FoIs with violence our rights to free speech and to get information are fundamental human rights. For a government agency to say if you try to exercise these rights we will remove other rights is equally shocking. In saying we have no right to information because people are asking for information and discussing and criticizing on forms is basically violating our rights to free speech.

The clearly haven't done much investigation into the issue because if they had they would realize that an information tribunal had rejected these arguments.
 

NelliePledge

Senior Member
Messages
807
Maybe this should be our strategy.
A campaign to save money - shut down the CBT/GET clinics.
Avoid all talk about anything else.

Then when they are shut down we start a new campaign....
the hospital based clinics are already in the CCGs crosshares for savings - the Nottingham City Hospital one has already closed to be replaced by a community based service basically merging it in with pain service so no specialist "CFS/ME" at all in Nottinghamshire. I saw a post the other day where someone mentioned one in the North West has also recently closed. I believe this is under the influence of IAPT and MUS as they believe they can get away with sending people for the IAPT type of generic CBT and then the generic pain service. So aiming to provide a service to mild/moderate ME/CFS patients that is even sub the sub par NICE guidelines............of course they are already "providing" a sub NICE non existent service to severe patients
 
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Their use of section 38 seems rediculous. If it can beused because of fear of angry tweets, then surely politicians could use it as a justification to avoid the release of almost any information?

Also, responding like this makes them look pretty bad. It seems tactically unwise. If I were them I'd have relied on Section 40.

Their response is in itself a good indication of their positioning, and shows how much trouble we're in with NICE. Being refused information in this way provides quite a lot of information in itself.

Tuller said:
Neither PACE nor other studies from this group of researchers have documented objective improvements to match these subjective results; indeed, objective measures have consistently failed to support the claims of improvement and recovery.

There was a statistically significant improvement for the 6 mwt for GET over SMC only (although this difference was too small to meet the criteria for a 'clinically significant improvement' which had been used for the trial's primary outcomes).
 
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