• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Cheshire

Senior Member
Messages
1,129
Swiss Re has released information about its 2017 “insurance medicine summit,” to be held this coming November. Not surprisingly, Professor White is on the schedule. Although he has retired from his academic position, he apparently continues his work promoting his egregious research to insurers. His talk is called “Burn out, vital exhaustion and chronic fatigue syndrome: Old wine in new bottles?” Presumably he will once more be discussing the false PACE trial results and perhaps the campaign of “harassment” that he claims angry patients have waged against him.

http://www.virology.ws/2017/08/07/trial-by-error-retired-pace-investigator-peter-white-and-swiss-re/
 

Denise

Senior Member
Messages
1,095
@lilpink @Denise

Thanks for responding and for the links. I'm unclear which he is referring to as I expected to see the screen shot in his post or a link to it but did not see one.

@Snowdrop - I can't find the screenshot either. The first part of today's post is current, and the second part if a re-post from 2015. It looks as though the freeezepage link is the screenshot Tuller is referring to in the current post.
 

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
He mentions linking to a screen shot of PDW announced as speaker at a Swiss Re conference but I don't see it.

Am I confused about this?
David says
Given Professor White’s ongoing role with the Swiss Re, I decided to repost the 2015 blog below. Shortly after I initially posted the blog, the insurance company removed from its website the article touting Professor White’s presentation. Therefore, in this version, I am linking instead to a screen-shot of the “disappeared” page. (Thanks, Anil van der Zee!)

and then says this further down
But here, I’ll focus on the third claim–that their consulting work “was not related to the research.” In particular, I’ll examine an online article posted by Swiss Re, a large reinsurance company. The article describes a “web-based discussion group” held with Peter White, the lead PACE investigator, and reveals some of the claims-assessing recommendations arising from that presentation. White included consulting work with Swiss Re in his Lancet disclosure.

I assume the link in this quoted section originally went to the Swiss Re site but it is now the link that @lilpink has given that is a saved version of that page.
 

Barry53

Senior Member
Messages
2,391
Location
UK
From the WMA DECLARATION OF HELSINKI – ETHICAL PRINCIPLES FOR MEDICAL RESEARCH INVOLVING HUMAN SUBJECTS:-
26. In medical research involving human subjects capable of giving informed consent, each potential subject must be adequately informed of the aims, methods, sources of funding, any possible conflicts of interest, institutional affiliations of the researcher, the anticipated benefits and potential risks of the study and the discomfort it may entail, post-study provisions and any other relevant aspects of the study. The potential subject must be informed of the right to refuse to participate in the study or to withdraw consent to participate at any time without reprisal. Special attention should be given to the specific information needs of individual potential subjects as well as to the methods used to deliver the information.
https://www.wma.net/policies-post/w...or-medical-research-involving-human-subjects/
 

Daisymay

Senior Member
Messages
754

Barry53

Senior Member
Messages
2,391
Location
UK
Further info on breaches of DoH in PACE laid out by Prof Hooper in complaint to the Lancet, followed by breaches of GMC regulations, starts on p29:

http://www.margaretwilliams.me/2011/complaint-to-Lancet-re-pace.pdf
Margaret Williams said:
It appears that the PACE Trial did not conform to the Declaration of Helsinki in full, for example:
participants and others have asserted that coercion was used (breaching A5,
A8, B20 and B22): it is understood that the policy at the now-closed Fatigue Clinic at the Royal Free Hospital was that patients who were asked but declined to enter the PACE Trial were to be discharged from the Clinic and would have no further access to a Clinic doctor for medical advice (access which, apart from symptomatic medical care, they might need in order to support a claim for State benefits, as a GP cannot endorse an application for
Disability Living Allowance). Having to choose between the option of an inappropriate intervention or no intervention plus no further access to a clinic doctor is not true consent. If Professor White (who was in overall charge of
the RFH Fatigue clinic) was recruiting patients attending the Royal Free Fatigue Service Clinic to the PACE Trial on the basis that non-compliers would be discharged from the Clinic raises the possibility that he was recruiting only CBT/GET-compliant patients to his MRC trial, which would decrease the number of trial drop-outs at a stroke, and this would be to his advantage (see http://www.meactionuk.org.uk/COERCION_AS_Cure.htm); furthermore, as noted above, a Minister of State confirmed that GPs were offered financial inducements to procure participants for the trial, and those GPs may have brought undue pressure on patients to enter the trial, which in turn may have compromised their own relationship with patients.
What an astonishing revelation!

The point about effectively filtering for CBT/GET-compliant patients, would not only have reduced the drop-out rate, but would also have tacitly improved the the chances of favourable responses to subjective measurement methods.

The meaction link cited is now broken. Does anyone know if that information still exists anywhere else?
 

slysaint

Senior Member
Messages
2,125
What an astonishing revelation!

The point about effectively filtering for CBT/GET-compliant patients, would not only have reduced the drop-out rate, but would also have tacitly improved the the chances of favourable responses to subjective measurement methods.

The meaction link cited is now broken. Does anyone know if that information still exists anywhere else?

this link works:

http://www.meactionuk.org.uk/COERCION_AS_CURE.htm

eta:
"Of just seven random controlled trials (RCTs) looking at CBT in “CFS/ME” that exist, three used imprecise entry criteria; two had negative results (meaning that CBT did not work) and one was on adolescents only, leaving just one RCT, and this study used a less aggressive type of CBT from that used by the Wessely School, of which Chalder is a prominent member. None of the seven RCTs included children or patients who were severely affected (see http://www.meactionuk.org.uk/Defiance_of_Science.htm )."
"
Gibson Inquiry member Lord Turnberg (the former Professor Sir Leslie Turnberg, President of the Royal College of Physicians and a staunch Wessely School supporter) stated at this same Oral Evidence session that everyone with “CFS” gets better with CBT and that this has been “proven”. Lord Turnberg suggested that Dr Jonathan Kerr from the Department of Cellular and Molecular Medicine, St George’s University of London (who was also giving evidence) should join forces with Trudie Chalder to look at how the genes of “CFS/ME” patients alter and recover with CBT. It was clear to all who heard this exchange that the Wessely School wanted to get into gene research and that they had got the next stage of their “CFS/ME research” well mapped out.
Chalder’s latest claim that CBT helps people with type I diabetes (diabetes mellitus, or DM) is interesting."
 
Last edited:

Woolie

Senior Member
Messages
3,263
Actually, I cant help thinking that Swiss Re are also getting bad advice. White is implying that if insurance companies pay out on CBT/GET - at several thousand pounds a pop - this cost will be offset by savings on other types of claims (presumably further healthcare costs, income support costs).

This claim is untrue. The McCrone cost effectiveness paper showed that in PACE, healthcare-related costs were higher following GET and CBT than following medical care alone (SMC). See Table 3. There was no difference between SMC and CBT or GET with respect to receipt of illness/disability payments. See Table 4.

The only way you can turn CBT/GET into a win if you're a government or insurance company is if you refuse to pay out healthcare and benefits to people who fail to improve on it. But I don't think insurance companies can do that.

So the insurance companies are getting just as conned as we are.

No-one wins with CBT or GET for CFS except those that promote and deliver CBT and GET for CFS.

It seems White's recommendations to Swiss Re are biased. While he was still heading a department that delivered CBT/GET, and advising insurance companies to reimburse these services, he was downright conflicted.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
This claim is untrue. The McCrone cost effectiveness paper showed that in PACE, healthcare-related costs were higher following GET and CBT than following medical care alone (SMC). See Table 3. There was no difference between SMC and CBT or GET with respect to receipt of illness/disability payments. See Table 4
Thanks for pointing this out. I don't think I've seen this emphasized anywhere else. Perhaps it would be something David Tuller could broadcast in a future blog in order to get the word out.