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

[Esther12]

I've just been asked to post these documents up, and it sounds like David Tuller got them via an FOI request, and is planning to publish a blog on them later this afternoon. It looks like it will take a few posts to get everything uploaded, so bear with me!

Looks like there's some annoying stuff in there.

edit: Here is Tuller's blog http://www.virology.ws/2017/09/11/trial-by-error-the-nice-topic-expert-reports/

 

[Esther12]

Finished in two posts only!

 

[Cheshire]

Tuller's article published: http://www.virology.ws/2017/09/11/trial-by-error-the-nice-topic-expert-reports/

Very concerning about any update of NICE guidelines...

In response to the CFSAC suggestion that it was important to focus on biomarkers and diagnostic tests, #6 wrote this: “In the UK I think we would see what the HHS CFSAC see as a failure to undertake rigorous research, more as a failure of the biological model to explain the condition adequately. However, I can understand that an alternative reaction to the failure of biological models to explain the condition is to try and define a subset of patients with the condition who appear to share a common biomarker. This approach has failed so far.”

Commentator #6 is called "an apparent CBT/GET hardliner" by Tuller

 

[Valentijn]

Commentator #6 is called "an apparent CBT/GET hardliner" by Tuller

Never thought I'd say this, but Tuller is too nice sometimes. Myself, I'd classify #6 as "an idiot with his head firmly wedged within his own posterior" I'm not sure how else they could so completely fail to comprehend basic science, the understanding of diseases in general, and the vast amounts of biological ME research.

 

[lilpink]

Finished in two posts only!

Nothing like being 'comprehensive' ..as in it really is nothing like being comprehensive!

 

[lilpink]

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

 

[Cheshire]

Never thought I'd say this, but Tuller is too nice sometimes. Myself, I'd classify #6 as "an idiot with his head firmly wedged within his own posterior" I'm not sure how else they could so completely fail to comprehend basic science, the understanding of diseases in general, and the vast amounts of biological ME research.

Reading more from #6:

And here’s what #6, the CBT/GET hardliner, had to say about the U.S.-based reports: “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.”

I'd be tempted to agree with you.

 

[trishrhymes]

I got as far as the bit in the first document that said they reviewed all the new evidence since the last review and the only study they though worthy of further consideration and comment by the 'experts' was FITNET. I can't bear to read any more.

WTF.

Compare this with the 3000 studies the US looked at in their review.

I despair.

Good article by Tuller.

Bad news for us in the UK.

NICE is a very very bad joke. I'm not laughing.

 

[Barry53]

"an idiot with his head firmly wedged within his own posterior"

Still sounds quite polite to me ...

 

[Cheshire]

Bad news for us in the UK.

Bad news for more people, US and UK guidelines are influencial beyond their territory. Maintaining the NICE guidelines as they are would be a very negative sign and allow psychobabblers to cite it extensively and be a conterpart for the IOM report...

 

[alex3619]

...this comment from #1 jumped out as particularly uninformed: “I am unaware of any concerns about the inclusion criteria of trials in CFS.”

I would have to conclude this comment from number one cannot be genuine unless the person is so clueless they should never have been consulted ... and should never be allowed to treat patients with CFS or ME for that matter.

 

[NelliePledge]

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

 

[Valentijn]

I would have to conclude this comment from number one cannot be genuine unless the person is so clueless they should never have been consulted ... and should never be allowed to treat patients with CFS or ME for that matter.

Yes, anyone calling themself an expert, or allowing others to do so, has an ethical duty to know what the hell is going on in their own field. That level of ignorance is an embarrassment to NICE and the NHS.

 

[Cheshire]

Yes, anyone calling themself an expert, or allowing others to do so, has an ethical duty to know what the hell is going on in their own field. That level of ignorance is an embarrassment to NICE and the NHS.

Yes, either this commentator is not aware of the controversy, and this person can hardly be considered an expert

Or this person is purposely denying a controversy exists in a wesselian manner (move along, nothing to see here) and this is truly dishonest.

 

[snowathlete]

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

it could be any one of half a dozen individuals in my opinion, but I think we deserve to know so we can scrutinize their conflicts of interest and whether their level of expertise are appropriate for them to comment.

 

[Chrisb]

I would have to conclude this comment from number one cannot be genuine unless the person is so clueless they should never have been consulted ... and should never be allowed to treat patients with CFS or ME for that matter.

This raises an interesting question to which someone may know the answer.

An express comment such as that should automatically exclude someone from being consulted as an expert. If NICE nevertheless consider and take into account his/her views do they remain compliant with their regulatory duties? Presumably they cannot select experts on a whim and will have a protocol to follow. Is that protocol in the public domain?

 

[A.B.]

Post on Tuller's article, not just here.

 

[Binkie4]

"The questionnaires, which were often only partially filled out, were sent to me as separate documents." (david Tuller)

I was struck by the fact that the topic experts did not complete the task set, and that Nice seems to have waved this by.

 

[sarah darwins]

And here’s what #6, the CBT/GET hardliner, had to say about the U.S.-based reports: “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.”

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

 

[BurnA]

@charles shepherd Are the MEA in a position to write to NICE about the quality of their experts?
Or more precisely, the quality of evidence provided by their experts, and that science does not support the claims?