David Tuller / Trial by Error: Retired PACE Investigator Peter White and Swiss Re

[Solstice]

I don't think they would need to occur that frequently for it to be useful for disability insurers to be able recommend CBT and GET. The individual liability for an insurer would very often be 100 times that and sometimes several hundred times that.

As Valentijn says, a percentage of people give up if they get turned down for disability payments. I have seen this both with public and private disability payments.

Also then in other cases where people do appeal, if the insurer can say that they offered therapy that has evidence for it, patients can lose out if they have not built up a strong case. I can recall one person who went to regulator without having built up a strong case to rebut it (being turned down).

So I could easily see how it could be financially worthwhile for insurance companies to offer to pay for such therapies.

It also doesn't help if you have an idiot for a lawyer, I can attest to that from personal experience. Different country though.

 

[Dolphin]

Personally I'm not convinced of conspiracy theories regarding NICE. From what I can see NICE look for therapies that have at least two positive RCTs. Then they look at the cost effectiveness.

Their letter to Tuller revealed some deep bias was which was based on the belief that ME patients were violent, and that FOI requests and online interest support that belief. It may not be a conspiracy to torture patients, per se, but they are heavily influenced by factors other than the science.

I could well believe NICE are currently biased on ME/CFS. They have previously recommended CBT and GET and they are really the only option now based on the way NICE does things (two positive RCTs plus cost effective) apart from offering nothing. So they are probably consulting proponents of CBT and GET to help support them. But that's very different from some of the suggestions about connections with insurance companies, etc. that I vaguely recall from this thread.

 

[Valentijn]

But that's very different from some of the suggestions about connections with insurance companies, etc. that I vaguely recall from this thread.

They don't have a problem with the lead doctor from their new neurology document being paid by a pharmaceutical company to promote psychosomatic diseases - which happens liberally in that document. I wouldn't be surprised if NICE is similarly tolerant of the involvement of disability insurance representatives advising them regarding ME/CFS.

 

[Jo Best]

Personally I'm not convinced of conspiracy theories regarding NICE. From what I can see NICE look for therapies that have at least two positive RCTs. Then they look at the cost effectiveness. It is easy to see how nothing else would seem eligible to be recommended at this stage.

I think the phrase 'conspiracy theories' implies a level of secrecy in a plot to misrepresent CBT and GET as based on best available evidence, whereas the views and conflicts of interest of the Wessely school / PACE trial PIs / biopsychosocial protagonists, are mostly available in their own words in the public domain. I'd describe it more as developing policy based on beliefs and vested interests rather than plotting conspiratorially.

I think there's plenty of evidence to reasonably conclude that the PACE trial was designed to provide policy-based evidence, not least that it was the first medical research to be co-funded by the Dept. for Work and Pensions, as CBT and GET were already recommended upon best available evidence at the time of publication of CG53 in 2007 and NICE now has evidence that CBT and GET were not cost effective in the PACE trial, yet stands firmly behind it.

 

[Barry53]

(two positive RCTs plus cost effective)

But I worry that the "cost effective" aspect unduly colours how they perceive the validity of the the RCTs they look at. RCTs being positive isn't good enough, they have to cut the mustard too.

 

[Dolphin]

NICE now has evidence that CBT and GET were not cost effective in the PACE trial, yet stands firmly behind it.

They can point to the study which claims that CBT and GET were found to be cost-effective in the PACE trial:

Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis
http://journals.plos.org/plosone/article/comments?id=10.1371/journal.pone.0040808

 

[Dolphin]

For the avoidance of any doubt, I do believe that insurance connections are likely making people like Peter White biased.

 

[BurnA]

They can point to the study which claims that CBT and GET were found to be cost-effective in the PACE trial

The one with the expression of concern ?

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808

 

[MEMum]

The one with the expression of concern ?

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808

According to David Tuller on Virology Blog,
http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/
the economic benefit only applies if unpaid care by family and friends is costed at the rate for a homecare worker:

"In another finding, the PLoS One paper argued that the graded exercise and cognitive behavior therapies were the most cost-effective treatments from a societal perspective. In reaching this conclusion, the investigators valued so-called “informal” care—unpaid care provided by family and friends–at the replacement cost of a homecare worker. The PACE statistical analysis plan (approved in 2010 but not published until 2013) had included two additional, lower-cost assumptions. The first valued informal care at minimum wage, the second at zero compensation.

The PLoS One paper itself did not provide these additional findings, noting only that “sensitivity analyses revealed that the results were robust for alternative assumptions.” Commenters on the PLoS One website, including Tom Kindlon, challenged the claim that the findings would be “robust” under the alternative assumptions for informal care. In fact, they pointed out, the lower-cost conditions would reduce or fully eliminate the reported societal cost-benefit advantages of the cognitive behavior and graded exercise therapies."

 

[Keela Too]

Their letter to Tuller revealed some deep bias was which was based on the belief that ME patients were violent, . . . .

I was looking for this reference regarding patients and the risk of violent behaviour, but I can't now find it. I'm sure I read it earlier. Do you still have the link to where this was posted?

 

[Invisible Woman]

I was looking for this reference regarding patients and the risk of violent behaviour, but I can't now find it. I'm sure I read it earlier. Do you still have the link to where this was posted?

There was something in the NICE correspondence to @charles shepherd. One of the reasons they gave for not naming their Topic Experts was to for the ",experts protection".

Edited to add: correction they said
As you may be aware we have been asked for the names of the topic experts in a freedom of information request. I can confirm that we hold the names of the topic experts who were asked for their opinion on the relevance of the published guideline. However we consider that the names are exempt from disclosure under 2 sections of the Freedom of Information Act.

 

[Keela Too]

There was something in the NICE correspondence to @charles shepherd. One of the reasons they gave for not naming their Topic Experts was to for the ",experts protection".

Edited to add: correction they said
As you may be aware we have been asked for the names of the topic experts in a freedom of information request. I can confirm that we hold the names of the topic experts who were asked for their opinion on the relevance of the published guideline. However we consider that the names are exempt from disclosure under 2 sections of the Freedom of Information Act.

Yes... I found that, but I seem to recall a much stronger wording. Can't seem to see it now.

 

[Invisible Woman]

Yes... I found that, but I seem to recall a much stronger wording. Can't seem to see it now.

I wonder if it was in their first reply to the MEA? The text above was a response to Charles' follow up letter I think.

 

[Valentijn]

I was looking for this reference regarding patients and the risk of violent behaviour, but I can't now find it. I'm sure I read it earlier. Do you still have the link to where this was posted?

http://www.virology.ws/2017/07/31/trial-by-error-nice-rejects-my-foi-request/

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.

 

[Keela Too]

Thank you @Valentijn