Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

[Wolfiness]

How were the "experts" chosen? Could it be the cart was put before the horse?

I'd imagine so. How are they going to be the ones to storm the Bastille on this?
What would our ideal NICE review have looked like?

 

[Wonko]

What would our ideal NICE review have looked like?

"We recommend that the guidelines are changed to remove GET and CBT as primary treatments. We further recommend that pwME should, at their request, be given access to medical treatment, even if this treatment is not available on the NHS, that they should be given unlimited home, social and financial support and that we should send them a nice card saying we're really sorry, with a generous compensation payment for the lack of treatment and harm caused over the last 28 years"

Would have been nice.

yep, I'm on drugs.

 

[NelliePledge]

t

so after all the fuss about not releasing names in Expert 5 which is the patient rep doc2 there are 2 first names unredacted - Amanda and Rosa

needless to say all the medics names are fully redacted

https://www.nice.org.uk/guidance/cg53/chapter/appendix-a-the-guideline-development-group

Only appears to be one Amanda on the list A ODonovan Clinical Psychologist. Whereas I had read #5 as a patient rep.in any event NICEs slapdash redaction appears to have possibly identified on of their topic experts.

 

[Wolfiness]

But how would they have started? Who would they have got to constitute this little revolution?

 

[mango]

I was able to download and open the documents without problems. Thank you so much David Tuller, and everyone else involved!

 

[Wolfiness]

“in the UK there is an increasing acceptance amongst patients and clinicians alike of a model that includes CFS/ME in the umbrella of functional neurological disorders, i.e. that it is an emotionally driven disorder.”

This is perhaps the sort of gauche naive statement that Sharpe tends to come out with. Even Peter White I think would be more subtle.

I think the PACE authors have made it their lives' mission to assiduously deny implying any such thing. They definitely did not overrule him.

 

[Valentijn]

I asked NICE about the experts and specifically whether any were PACE authors and was told none of the experts were PACE authors.

That figures to me. I think these people are wheeled in from outside the inner circle. There will be plenty of blimps to suit the cause.

There are plenty of non-PACE authors that are still part of the inner ME/CFS CBT circle. Many of them were involved with the clinics used by PACE, and some were on committees related to PACE. Others no doubt have defended PACE in letters to journals and such.

So PACE involvement goes far beyond the list of authors, and support for PACE goes further still.

 

[lilpink]

An excerpt from #5's document 2. The "special form of CBT" sounds very much like GET, and it completely messed this lady up by the sound of it. She was told "to try out this practical approach because nothing will be lost by trying but much may be gained":-


See also @Dolphin's thread on the PRINCE trial and Rosa ...
http://forums.phoenixrising.me/inde...ptoms-reduction-intervention-cbt-trial.48121/

Is it appropriate for No 5 (the patient Rep) to have another known disease whilst representing ME (in this case)? Whilst I'm not saying it's impossible to have 2 diagnoses at the same point in time for the purposes of a NICE Guideline review surely only the disease in question, with no confounding alternative diagnoses, should be considered?

EDIT: assuming number 5 *is* the patient rep. Which might be questionable.

 

[Orla]

Is it appropriate for No 5 (the patient Rep) to have another known disease whilst representing ME (in this case)? Whilst I'm not saying it's impossible to have 2 diagnoses at the same point in time for the purposes of a NICE Guideline review surely only the disease in question, with no confounding alternative diagnoses, should be considered?

The patient rep is not the person harmed by GET. They include this story as part of their submission.

 

[lilpink]

Just to point out to anybody interested that two papers have been published by researchers on the outcomes from the CFS/ME clinics in England and the results have not been good:

You have the links the wrong way around for these two papers I think, but this one

https://www.ncbi.nlm.nih.gov/pubmed/23538643
(Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database.
Crawley E1, Collin SM, White PD, Rimes K, Sterne JA, May MT; CFS/ME National Outcomes Database)

uses this REC number: 07/Q2006/48 which was first raised as an issue in this PR post here: http://forums.phoenixrising.me/inde...review-of-crawley-school-absence-study.53544/
and then later also covered by (but not specific to) David Tuller's blog here: http://www.virology.ws/2017/08/28/trial-by-error-no-ethical-review-of-crawley-school-absence-study/

In the case of this QJM paper the problem is considerably more black and white (excuse the pun!) in that the REC number refers to a paediatric longitudinal study whereas it's easy to see that this paper actually refers to adults only. I would be inclined to ask: "How is it that this paper has not been retracted, given it was published in the first place? Why is it possible for Crawley, Collin, White et al to have a paper published which uses an adult cohort but refers to a solely paediatric REC number which justifies it being considered 'service evaluation' ..or tbh justifies anything at all. The REC number might as well be 'Noddy goes to Toytown' in that it makes just as much sense.

I appreciate this is slightly off topic ... just outlining the absurdity of the BPS School 'evidence base'.

 

[lilpink]

The patient rep is not the person harmed by GET. They include this story as part of their submission.

Ok thanks. I have edited my post above. Having said that it's still inappropriate to use documents that have a confounding diagnosis within this context..surely? It's impossible to say where symptoms of ME end and those of SLE begin or vice versa.

 

[Cinders66]

Yes , very similar.
Either the same persons input, an expression of thinking typical of a small group of ME skeptics who get involved in this official stuff, or is this thinking is more pervasive than we realise in the establishment outside our ME/CFS bubble where we discuss our reality and biomedical research. With more pushing of functional classification seemingly going on, is this really what most no nothing's but influential people in establishment are saying whilst we focus on CMRC /IiME conferences and think things are supposedly progressing in uk? are they?

This comment from number 6

“I am suspect [sic] that there is a tendency in the USA to push towards an entirely biological explanation for the condition, whereas in the UK there is an increasing acceptance amongst patients and clinicians alike of a model that includes CFS/ME in the umbrella of functional neurological disorders, i.e. that it is an emotionally driven disorder.”

reminds me of this

"Functional symptoms are complaints that are not primarily explained based on physical or physiological abnormalities. They are likely to have an emotional basis. They may mimic neurological disorders."

from the draft guideline for suspected neurological conditions http://www.meassociation.org.uk/201...ed-neurological-conditions-11-september-2017/

 

[Cinders66]

This is the original guideline committee, of which NICE say four were consulted.
I don't see how four were from this list as only two are neurologists or psychiatrists. I Suspect Santhouse will be one of them.

I think nice, essentially consulting neurologists and psychiatrists, supports the idea they are approaching the illness as a functional neurological disorder.
With the latest research on immunity, auto immunity and energy production and something wrong in the blood I don't accept that classification or the idea people like Collin blakemore had that this is a brain disorder.

Appendix A: The Guideline Development Group

• Members of the GDG from the National Collaborating Centre for Primary Care (NCC-PC)
• NCC-PC technical team

Chair: Professor Richard BakerHead of Department, Department of Health Sciences, University of Leicester

Mr Richard EddlestonPatient Representative, Nottingham

Mrs Ute ElliottPatient Representative, Sheffield

Ms Tanya Harrison (resigned August 2007)Patient Representative, Norfolk

Ms Jessica Bavinton Physiotherapist, London

Dr Esther CrawleyConsultant Paediatrician, Bath

Dr Tony DownesGeneral Practitioner, North East Wales

Dr Richard GrünewaldConsultant Neurologist, Sheffield

Dr William HamiltonGeneral Practitioner/Researcher, Bristol

Mrs Judith HardingDietitian, Essex

Dr Frederick NyeInfectious Disease Consultant Physician, Liverpool

Ms Amanda O'Donovan Clinical Psychologist, London

Dr Alastair SanthouseConsultant Liaison Psychiatrist, London

Dr Julia C SmedleyConsultant Occupational Health Physician, Southampton

Dr David VickersConsultant Paediatrician, Cambridge

Mrs Gillian WalshNurse, Manchester

Ms Carol WilsonOccupational Therapist, Falmouth

Dr Philip MD WoodConsultant Immunologist, Leeds

 

[Cinders66]

Dr David vickers runs the Cambridge CFS/ME service. It says they base it on NICE and call it chronic fatigue service so that's explanatory as to his position. It could be him rather than Crawley who was consulted but I suspect it's either one of the two pediatricians who are running a service and are commenter number 1#. Few Neurologists head CFS clinics. I think it unlikely Crawley was asked to critique her own paper so I doubt she was one of the topic experts. Commentator one ran a clinic but seemed pretty clueless i.e. Wasn't sure if larger rituximab trials were underway. They Seemed only to be interested in and knowledgeable on management etc so highly likely just a CF pediatrician.

Btw I hope no one finds it offensive or a witch hunt trying to pin this identities down. I can't believe how they were consulted or their lack of knowledge and trying to put in names is helpful as to gage just what expertise delivered the "no need for review" verdict.

Edit# I now dont think commenter 1 was a pediatrician because of the quote regarding patients views on criteria, you wouldn't expect kids to have a view. Therefore I think commenter 1 likely to be psychiatrists sant hous who ran the kings CFS service 10 years plus and still might do. Unless he's commentator 6 but I think unlikely.

 

[Valentijn]

This is the original guideline committee, of which NICE say four were consulted.
I don't see how four were from this list as only two are neurologists or psychiatrists.

Patient rep, Grunewald (neurologist), Crawley or Vickers (pediatrician), and Santhouse (psychiatrist)?

 

[Cinders66]

In regards to my comment above, reading the last file, commentator three sounds like Crawley, as to what criteria to use for their research etc broad behavioral therapies if we want To be strict let's add Fukuda in?
I agree commentator six is likely a neurologist.
Is a four out of six no need to review vote really good enough, I'd expected it to be overwhelming. I'd also expected the decision to be reached through some type of expert discussion or board meeting where people could be challenged and points debated rather than a few opinions just sought and then non experts making a decision.

 

[Cinders66]

Patient rep, Grunewald (neurologist), Crawley or Vickers (pediatrician), and Santhouse (psychiatrist)?

Does grunwald have any actual experience or does he just say oh that's functional not my concern in a clinic? I did a brief google.
Reading above on the redaction it seems an Amanda was consulted, there was one on original committee but I think the patient is called Amanda and rosa is her friend, not Drs.

The Amanda of the original nice committee seems to have been a psychologist working as part of the infamous st barts team (under dr Peter white) and she advocated in 2006 for the multi disciplinary team approach, can imagine her being A very pro CBT NICE Guidelines then. Were they choosing people who's position was let's have lots of lovely CBT?

 

[Chrisb]

It appears that #1 said "In my clinical experience in a CFS/ME clinic in the 10 years since the guidelines were published, no concerns have ever been expressed by patients attending the clinic about the diagnostic criteria used in CG53."

This is entirely plausible and yet an astonishing statement. Effectively he is saying that if his patients, new to the illness, do not educate him about the condition, he sees no necessity to undergo normal professional, ongoing education about a subject in which he purports to be an expert. Alternatively, if he does, in fact, know better, he sees no necessity to raise the matter, so long as his patients do not.

For his expertise he seems to say that he is dependent on his patients. I suppose that's good enough for NICE, provided that the views of the right patients are involved.

 

[NelliePledge]

t

https://www.nice.org.uk/guidance/cg53/chapter/appendix-a-the-guideline-development-group

Only appears to be one Amanda on the list A ODonovan Clinical Psychologist. Whereas I had read #5 as a patient rep.in any event NICEs slapdash redaction appears to have possibly identified on of their topic experts.

#5 may be Amanda O'Donovan

 

[TiredSam]

For his expertise he seems to say that he is dependent on his patients.

And if none of his patients are cyberchondriacs, nobody ever learns anything new.