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

[Wonko]

Nicely spun, huh? "... increasing acceptance", implying delusion across the pond. They just can't help themselves.

To be fair there is a certain amount of circumstantial evidence that suggests the Americans (as a nation) are deluded, Most of it has orange hair.

 

[user9876]

Given they say that their surveillance report could include 3 articles including ones that will have a future effect. I think its shocking that they have failed to look at Fluge and Mella's Rituximab study and follow up papers. One of the papers they chose seemed irrelevant and the fitnet one says nothing of great interest given it repeats many of the same methodological issues.

2 studies were selected for consideration for individual commentary using the following criteria:
 Studies that reinforce or strengthen existing recommendations
 Studies that might impact on current guideline recommendations in the future although evidence is insufficient to impact on guidance at present
 Studies on a new intervention, diagnostic strategy, prognostic tool for which the evidence is insufficient to impact on guidance at present.
 Studies partly addressing a research recommendation although evidence is insufficient to impact on guidance at present?
 Studies highlighted through the topic expert questionnaire.
 Studies that were mentioned in the guideline as being of relevance but ongoing at the time of guideline development.
The surveillance report may contain detailed commentary on up to 3 articles felt to be of particular interest to this topic.

 

[Rick Sanchez]

Disturbing reading.

Whoever #6 is, we know that the person is someone with a hard on for the umbrella term somatic functional disorders, this also precludes the person from being someone like White, who has been critical of somatic functional disorders in the past.

My guess would be someone like Wessely, Nimnuan or Sharpe.

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

So we can rule out Sharpe as well I guess.

 

[Jonathan Edwards]

To be fair there is a certain amount of circumstantial evidence that suggests the Americans (as a nation) are deluded, Most of it has orange hair.

We need to be precise about our terminology. This is not a delusion. The hair really is orange and as John Le Carré said 'something seriously bad is going on'.

 

[Keela Too]

I'm opening a book on #1 and #6 being White and Crawley....

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

 

[Jonathan Edwards]

Disturbing reading.

Whoever #6 is, we know that the person is someone with a hard on for the umbrella term somatic functional disorders, this also precludes the person from being someone like White, who has been critical of somatic functional disorders in the past.

My guess would be someone like Wessely, Nimnuan or Sharpe.

I don't think can be Wessely. He is much better at dancing around the issue.

“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.”

This indicates that 6 does not think emotions are biological. Presumably they are made of woo-woo or ectoplasm or some such and Simon quite categorically says that this is Cartesian dualism and there is no woo-woo.

I have not so far met a patient with ME who accepts that their problem is 'emotionally driven'.

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.

 

[anni66]

This is just part of a reframing - MUS and functional somatic disorders are an attempt to reframe perspectives- as evidenced in the thread on neurologists in UK not considering ME a neurological condition. This should not be viewed in isolation.

 

[Jonathan Edwards]

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.

 

[Rick Sanchez]

I don't think can be Wessely. He is much better at dancing around the issue.

“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.”

This indicates that 6 does not think emotions are biological. Presumably they are made of woo-woo or ectoplasm or some such and Simon quite categorically says that this is Cartesian dualism and there is no woo-woo.

I have not so far met a patient with ME who accepts that their problem is 'emotionally driven'.

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 figure you are correct. The statements made by #6 do come across as borderline bonkers. Either the person is completely inept, or the person hasn't been in the game long enough to have learned the mind-body-duality boogaloo.

 

[Jonathan Edwards]

I have not looked at all the guff but it looks like a rout as far as I can see. No mention of Cochrane, or indeed any sort of comprehensive reappraisal. But it is useful to see the absurdity of these reports in full view. Well done to those who have got it on the page. The more that is known about the paucity of their ammunition the better. Maybe they are cosily ensconced in their medieval castle at present but without boiling oil and with a limited stock of cannonballs they will not last forever.

 

[A.B.]

Can we talk about contempt for biological approaches to ME/CFS yet? These experts don't consider the RituxME trial to be worth mentioning, despite the review process giving space to important upcoming studies. This makes me think that this review may have been done specifically to buy them maximum time before being forced to consider Rituximab (if I understand how these things work).

 

[Jonathan Edwards]

Can we talk about contempt for biological approaches to ME/CFS yet? These experts don't consider the RituxME trial to be worth mentioning, despite the reivew process giving space to important upcoming studies. This makes me think that this review may have been done specifically to buy them maximum time before being forced to consider Rituximab (if I understand how these things work).

I don't think so, I think this is to capitalise on FITNET. They do not believe phase 3 will show anything. If it does none of this is relevant anyway. NICE guidelines do not survive the stampede of biological facts for long. They held out against anti-TNF and rituximab for RA for a few months each but they could not keep up stonewalling. The problem at the moment is that there are no biological facts to get them with - not the sort that are needed. A positive phase 3 would overturn that completely.

 

[Keela Too]

I also asked about the number of psychiatrists consulted for some other conditions. This was the reply:

"You also asked how many psychiatrists were consulted as topic experts when the following guidelines were reviewed:


NG71 Parkinson's disease in adults
CG81 advanced breast cancer: diagnosis and treatment
NG17 type 1 diabetes in adults: diagnosis and management
CG152 Crohn's disease: management.


The guidelines on Parkinson's disease in adults (NG71) and type 1 diabetes in adults (NG17) were published in July 2017 and August 2015 respectively, and have not yet undergone a surveillance review.


The advanced breast cancer guideline (CG81) published in 2009, it had a surveillance review in November 2015 and the decision was that our recommendations on reassessing ER and HER2 status when disease recurs, should be updated. There were no psychiatrists consulted as topic experts for this review.


The Crohn’s disease guideline (CG152) published in October 2012 and last had a surveillance review in June 2017, the decision was that an update was needed. There were no psychiatrists consulted as topic experts for this review."

 

[trishrhymes]

I would have guessed #6 from that ridiculous stuff about functional disorders to be either Chalder or Moss-Morris, but neither of them is a doctor, so I guess I'm wrong.

 

[Jonathan Edwards]

I have not got the time at present to read through all the reports but it is interesting that the biological view is even mentioned. These people are supposed to be commenting on the quality of evidence from trials not about theories. They seem to think their position is strong enough to pontificate about theories but I think they may be misjudging the wind direction.

 

[Jonathan Edwards]

I would have guessed #6 from that ridiculous stuff about functional disorders to be either Chalder or Moss-Morris, but neither of them is a doctor, so I guess I'm wrong.

Do they have to be doctors? Moss Morris would seem very plausible as someone this dim.

 

[trishrhymes]

If they are supposed to be commenting on quality of evidence, surely the article in the special issue of the Journal of Health Psychology should be taken into consideration as part of a review of PACE and all the other BPS trials.

 

[trishrhymes]

Do they have to be doctors? Moss Morris would seem very plausible as someone this dim.

I think we were told they were all either psychiatrists or neurologists or a paediatrician.

 

[Jonathan Edwards]

I think we were told they were all either psychiatrists or neurologists or a paediatrician.

Then I think 6 is probably a rather young wet behind the ears neurologist. I may of course be wrong but neurologists are quite good at being that crass early in their careers. On the other hand whoever answered the question may bot easily the difference between psychiatrist and psychologist, but being a paternalistic organisation I guess they likely to regard female psychologists as mere hand maidens, so neurologist is my bet.

 

[A.B.]

Insomnia, depression and some immune markers are claimed to predict return to work, treatment response to graded exercise and disease everity respectively e.g Kallestad et al J Psychosm Res 2015; 78: 427-37. The depression study is my own (Wearden A et al Br J Psychiatry).

Is this the reviewers own study?

Depressive symptoms and pragmatic rehabilitation for chronic fatigue syndrome
A. J. Wearden, G. Dunn, C. Dowrick, R. K. Morriss
The British Journal of Psychiatry Sep 2012, 201 (3) 227-232; DOI: 10.1192/bjp.bp.111.107474

Which of these gets the honor of being the only reviewer voicing a specific concern about PACE?