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

M

MEMum

Senior Member
Messages
440
Woolie said:
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.
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I think this is exactly what they are doing. They coerce people into following the "treatment, ie CBT and GET" with approved providers. If they then end up worse/unable to work they either say it is a mental health problem and therefore they will not pay sickness benefit, or some seem to be including CFS and/or ME in the small print of their policies to start with.
 
Mithriel

Mithriel

Senior Member
Messages
690
Location
Scotland
It is so long ago now that PACE was first launched that it is the paper and the changes made during the trial rather than the design that is discussed most often so there must be many people who have become ill since then that don't know how bad it was from the very beginning.

For myself, and I think most of the ME community, I felt the trial was being set up with patients carefully cherry picked to give them the results they wanted. The fact that they had to change the outcomes to get them was actually a shock to me. I expected them to get very high recovery rates simply because of the way the trial had been set up.

Mithriel
 
Woolie

Woolie

Senior Member
Messages
3,263
MEMum said:
I think this is exactly what they are doing. They coerce people into following the "treatment, ie CBT and GET" with approved providers. If they then end up worse/unable to work they either say it is a mental health problem and therefore they will not pay sickness benefit, or some seem to be including CFS and/or ME in the small print of their policies to start with.
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Yes, but why not just cut to the chase and include CFS or ME in your mental health policy at the start? And save the cash? Also, there's no situation where a diagnosis can change from a physical illness to a mental disorder just because a treatment failed. Treatment failures happen all the time.

As far as I can see the only situations in which spending extra money on CBT/GET would be worth it (to a govt or health insurer) is:

1. If enough patients refuse point blank to do it, and you can legitimately deny them benefits based on that refusal. The proportion of people refusing would need to be reasonably high for you to come out on top with this.

2. If your institution is required to offer some form of treatment for the disorder, and it turns out CBT/GET is cheaper than the alternatives.

Other than that, all benefits to govt/insurance rely on the treatments actually working. And they don't. So its all a lie.
 
A.B.

A.B.

Senior Member
Messages
3,780
David Marks has definitely joined the club of polite academics turned into angry PACE critics:

The whole world agrees that the PACE Trial was an extremely badly done trial - except the investigators themselves. Professors Peter White, Michael Sharpe, Trudie Chalder and their chameleon-Guru figure, Sir Simon Wessely, know that their beloved PACE trial is rubbish. They know it but they cannot acknowledge it. That would be hammering the final nails into each other's coffin of a crumbling career in Medicine/Psychiatry/Psychotherapy. It surely must be difficult to come to terms with the Bad Science they have done, the consequential harm and suffering inflicted on thousands of ME/CFS patients in the name of therapy. But I reserve my empathy for the patient community. It is only a matter of time before the silence of the complicit, kow-towing media is replaced by a booming epiphany of truth and justice. Until that moment the bedraggled few remaining members of the PACE Club will paddle away in their hole-ridden canoe, supported by an underpowered outboard motor bolted on by the pathetically inept SMC 'experts', MRC jobs-worth apologists, and nameless Oxford University functionaries to make the PACE Club Canoe look increasingly foolish, irrelevant and doomed. One day soon, the already half-submerged PACE Canoe is going to go under, taking with it the whole shambolic crew. There will be no tears, only thunderous applause.
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http://www.virology.ws/2017/08/07/t...-peter-white-and-swiss-re/#comment-3459075535
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
Barry53 said:
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.
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It is certainly interesting to see the details laid out by Margaret Williams. It comes as no surprise to me, though. I think I said in my JHP article that Murphy's Law applies to bias - if it can happen it will. And in recent comments I have made on a Cochrane review I posted out that the reason why we no longer do trials like PACE in rheumatology is because of the scandal in the 1970s about just the sort of coercion suggested here. It was common for physician to discharge patients who did not agree to take part in trials and it probably still is. One particular physician in the 1970s became notorious for having a pet group of patients who went into trials because they always gave the right answers and chucking everyone else out.

The reason why PACE cannot be interpreted is that this sort of bias always creeps in if it can and so trials have to be set up with firewalls.
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
Jonathan Edwards said:
It was common for physician to discharge patients who did not agree to take part in trials and it probably still is.
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This feels like it must violate some aspect of human rights law, let alone the Hipppocratic oath. I appreciate that proving something can be a different kettle of fish, but I just cannot believe human rights are not being formally infringed by this.
 
Seven7

Seven7

Seven
Messages
3,444
Location
USA
I really don't understand. In my eyes there is insurance fraud very clear here.
1) The insurance have undisclosed affiliations with the investigator.
2) The investigator exaggerate the benefits of the study.
3) Deny coverage for patients based on not trying hard enough by the fraudulent study set goals.

I am having a really hard time here, because this whole situation is being danced around. Before it was hard to prove that there was intentional manipulation of the results, and the affiliation were not clear (or undisclosed). But today with all that has transpire, there is still not consider fraud???
 
V

Valentijn

Senior Member
Messages
15,786
Woolie said:
Yes, but why not just cut to the chase and include CFS or ME in your mental health policy at the start? And save the cash?
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Insurance tends to be tightly regulated. I bet they're not allowed to declare ME to go under mental health when it's classified as neurological everywhere else. Hence the wriggling about with separate "fatigue" classifications in the UK.
 
C

Chrisb

Senior Member
Messages
1,051
ukxmrv said:
This has been the problem for a long time in the UK. What-ever the abnormalities ever found in ME, CBT will always be "the cure".
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It seems that this is not a new phenomenon.

By some strange route I found myself reading about Professor Michael Shepherd, who taught at the Maudsley. He apparently said of a colleague that for a range of illnesses the diagnosis was benzodiazepine and the treatment was anxiety, or whatever. (I forget the detail and have not rediscovered the quote.) He said that no one was quite sure what was meant.

He seems to have been an interesting character who coined the term "mythod" to describe the practice of making sweeping generalisations from trivial clues alongside Freudian supposed analysis of the human mind; a method described in Wiki as intuitive and devoid of logic and scientific value. Someone may have skipped those lectures
 
I

Invisible Woman

Senior Member
Messages
1,267
Woolie said:
Yes, but why not just cut to the chase and include CFS or ME in your mental health policy at the start? And save the cash? Also, there's no situation where a diagnosis can change from a physical illness to a mental disorder just because a treatment failed.
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These policies change and develop as time goes on and the restrictions become tighter. So originally mental health issues wouldn't necessarily have been excluded then to save money they were. Then to save more money the goal posts were moved.

As far as I am aware some policies - like maybe company policies might offer a certain amount of rehab.

The thinking then might be:. If this is a physical problem, you will respond to physical therapy of some kind. If you don't respond to what they consider the appropriate therapy then the issue is either primarily psych or a case of malingering.

These companies change their policies regularly both to make them appear more attractive so people will take 'em out but also to limit their liability.
 
Jo Best

Jo Best

Senior Member
Messages
1,032
Sorry I don't have the brain power to quote or tag people just now, but if you skim this thread you will see at least one example of an insurance company that lists ME and CFS under mental disorders, and where a company stops payments when the recommended GET + CBT didn't work, stating the claimant "had been given the tools for recovery.": http://forums.phoenixrising.me/inde...wiss-re-insurance-medicine-summit-2017.53306/
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
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