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Two-thirds of studies on 'psychosocial' treatments fail to declare conflicts of interest

Dolphin

Senior Member
Messages
17,567
http://www.sciencedaily.com/releases/2015/11/151125143607.htm

Two-thirds of studies on 'psychosocial' treatments fail to declare conflicts of interest
Date:
November 25, 2015
Source:
University of Cambridge
Summary:
The creators of commercially sold counseling programs increasingly profit from public health services across the world. However, a new study on the evidence basis for some of the market leaders reveals that serious conflicts of interest across the majority of the research go habitually undisclosed.

Not on ME/CFS studies. I remember looking at Peter White's papers before the PACE Trial came out in 2011 and for many of them he didn't mention the work he did for insurance companies.
 

Denise

Senior Member
Messages
1,095

barbc56

Senior Member
Messages
3,657
I will have to look for the source, but I was reading an article that reports there are many studies that are not registered. I was quite surprised.

Barb
 
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15,786
Not on ME/CFS studies. I remember looking at Peter White's papers before the PACE Trial came out in 2011 and for many of them he didn't mention the work he did for insurance companies.
Do we know the years he was working for insurance companies, or even when he started?
 

Dolphin

Senior Member
Messages
17,567
Do we know the years he was working for insurance companies, or even when he started?

This was "competing interests" for the PACE Trial protocol published in March 2007:
http://www.biomedcentral.com/1471-2377/7/6#sec5
PDW has done voluntary and paid consultancy work for the Departments of Health and Work and Pensions and legal companies and a re-insurance company. MCS has done voluntary and paid consultancy work for government and for legal and insurance companies. TC has done consultancy work for insurance companies, is the author of Coping with Chronic Fatigue published by Sheldon Press and co-authors Overcoming Chronic Fatigue with Mary Burgess published by Constable and Robinson. RW and JD have no competing interests to declare.

If I recall correctly, there were papers subsequent to this where he didn't mention such competing interests.
 

Hip

Senior Member
Messages
17,824
Do we know the years he was working for insurance companies, or even when he started?

Don't know the answer to that question, but I thought I would take the opportunity to repost someone's most pertinent comment about Peter White and his work for disability insurance companies:

Peter White fails to mention one important consideration when it comes to the diagnosis given to patients: CFS brings with it the danger of insurance companies turning down claims from patients.

White was happy to expand upon this when he was discussing the results of his PACE trial with his employers at Swiss Re:


"A final point specific to claims assessment, and a question we’re often asked, is whether CFS would fall within a mental health exclusion, if one applies to a policy. The answer to this lies within the precise exclusion wording. If the policy refers to functional somatic syndromes in addition to mental health, then CFS may fall within the exclusion. If the policy doesn’t refer to functional somatic syndromes as well as mental health then it would be difficult to apply. The point made is that a diagnosis of Myalgic Encephalomyelitis or ME (a term often used colloquially instead of CFS) is considered a neurological condition according to the arrangement of the International Classification of Diseases (ICD) diagnostic codes whereas CFS can alternatively be defined as neurasthenia which is in the mental health chapter of ICD10."

http://www.swissre.com/clients/newsletters/Managing_claims_for_chronic_fatigue_the_active_way.html

[Note: the above Swiss Re webpage is no longer available, but @Bob was diligent enough to preserve a copy of it here. And it is also archived here.
Source: above comment comes from the comments section of this Medscape article (free login required):
Chronic Fatigue Syndrome: Right Name, Real Treatments, by Peter D. White.
 
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Hip

Senior Member
Messages
17,824
Wow, @Hip, I never knew this! :eek::eek::eek::eek: Gives a whole new perspective to his insistence on the name CFS!

Yeah, it would be nice to know more about how the name CFS was set up. As Peter White points out, it can be alternatively be defined as neurasthenia, which is in the mental health chapter of ICD10.

This alternative definition of CFS as a mental disorder would seem to provide maneuvering room for disability insurance companies: it would allow them to withhold disability payouts to CFS patients on the grounds that insurance policies don't usually cover long term payouts for mental disorders, only physical disorders.

I'd like to find out more about how CFS can be classed as a mental disorder; and in particular, who was responsible for setting it up in this way.
 

halcyon

Senior Member
Messages
2,482
I'd like to find out more about how CFS can be classed as a mental disorder; and in particular, who was responsible for setting it up in this way.
As far as I understand, because ICD-10 code F48 contains "fatigue syndrome", Peter White thinks that you can use that to diagnose CFS as neurasthenia. He talks about it starting around 4:00 in this talk:

 
Messages
15,786
As far as I understand, because ICD-10 code F48 contains "fatigue syndrome", Peter White thinks that you can use that to diagnose CFS as neurasthenia.
That can only happen in the UK though, as far as I know. And it might be a bit dodgy even there. In the US (from what I recall) they can't shove a diagnosis under a broader subject heading without picking a specific subsection code.
 

Chrisb

Senior Member
Messages
1,051
This subject touches on a matter which has interested me. At the moment I am not able to provide the source, but if you look at the paper describing the establishment of "the Oxford Criteria" it will be seen that there is an acknowledgment that the conference was funded by Peter White and another whose name I forget. This would suggest an unusual interest in, and some degree of certainty as to, the outcome.

There is a long held belief that the person with the power to influence outcomes is not the judge, but the person who selects the judge.

It would be interesting to know the original sources of the funding.
 

halcyon

Senior Member
Messages
2,482
This subject touches on a matter which has interested me. At the moment I am not able to provide the source, but if you look at the paper describing the establishment of "the Oxford Criteria" it will be seen that there is an acknowledgment that the conference was funded by Peter White and another whose name I forget. This would suggest an unusual interest in, and some degree of certainty as to, the outcome.

There is a long held belief that the person with the power to influence outcomes is not the judge, but the person who selects the judge.

It would be interesting to know the original sources of the funding.
Byron Hyde has some interesting anecdotes about it in his Little Red Book on page 14. But yeah, talk about foregone conclusions:
Let us to a quick accounting of the distribution of specialists in this committee:
1. Psychiatrists or psychologists: 38 %
2. Infectious Disease: 4 persons or 19 %
3. Biochemist: 2 persons or 10 %
4. Internal Medicine: 5%
5. Pharmaceutical Corporation: 5%
6. Immunopathologic: 1 person or 5%
7. MRI Specialist: 1 person or 5%
8. GP: 1 person or 5%
9. Neurologist: 1 person of 5%
 

Sean

Senior Member
Messages
7,378
There is a long held belief that the person with the power to influence outcomes is not the judge, but the person who selects the judge.
In a similar vein, the power in media ownership lies not in influencing specific outcomes, but setting the agenda for public debate, and the range of opinions that are allowed to be expressed about issues.
 

Hip

Senior Member
Messages
17,824
That can only happen in the UK though, as far as I know. And it might be a bit dodgy even there. In the US (from what I recall) they can't shove a diagnosis under a broader subject heading without picking a specific subsection code.

Not sure about neurasthenia, but "chronic fatigue syndrome," a disease category invented in the US, appears to have been in part designed to help insurance companies refuse payouts to ME/CFS patients.

In the 1980s when "CFS" was created by the CDC, disability insurance companies were urgently trying to cut back on payouts to ME patients, because the incidence of ME had risen enormously since the 1960s, so this was costing these insurance companies a lot of money:
Following successful immunisation against poliomyelitis in the early 1960s and the removal of 3 strains of polio virus from general circulation in the countries concerned, the related non-polio enteroviruses rapidly filled the vacancy.

By 1961, the prevalence of diseases (such as viral meningitis) caused by these agents soared to new heights. In the mid 1980’s, the incidence of ME had increased by some seven times in Canada and the UK, while in the USA a major outbreak at Lake Tahoe (wrongly ascribed at first to a herpes virus) led to calls for a new name and new definition for the disease, more descriptive of herpes infection.

Source: RESEARCH INTO ME/CFS, 1988-1998 – Too much PHILOSPHY and too little BASIC SCIENCE! — Dr Elizabeth Dowsett




Hillary Johnson, in her famous ME/CFS book Osler's Web, examines the shenanigans behind the creation of the disease category of CFS. In this review of her book, it says:
Patients lose medical insurance simply for being diagnosed with CFS — a policy that continues to the present among major carriers.

Hillary Johnson also says that the name CFS was selected by:
a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about cost to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months – was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the greatest tragedies in the history of medicine.

Source: Who benefits from 'CFS'



I would like to know the exact regulatory framework (and ICD-9 or ICD-10 code shenanigans) that enables insurance providers to refuse long-term disability payouts to CFS patients.

I'd like to find more evidence and information about this idea that the surreptitious purpose behind inventing CFS was primarily to help the insurance industry wangle out of providing disability payments to ME/CFS patients. Medically speaking, CFS was not really necessary, since myalgic encephalomyelitis already existed in the ICD-9 (which was in force in the 1980s), including the US version, the ICD-9-CM, under code ICD-9-CM 323.9.

In the US political setup, the corporate sector has a stronger influence over government policy (via lobbying etc) than it does in European countries. So if the insurance corporates (which are multinational players) were to choose a country where they could best manipulate government policy for their own ends, the US would be the first choice.

Plus the fact that, more than any other country, US policy has worldwide impact. So if you set up this new disease of CFS in the US, it is likely that other countries in Europe and elsewhere will soon follow suit. And indeed, in the UK now, I think the term CFS — and its assumed psychological etiology — is probably used a lot more than ME.



In summary: it seems quite feasible that that one of the main driving forces behind the CDC's creation of the CFS disease category was for the express purpose of cutting off disability payouts to ME/CFS patients.
 
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SOC

Senior Member
Messages
7,849
Plus the fact that, more than any other country, US policy has worldwide impact.
Yeah, it's too bad other countries don't spend their own money doing the necessary research and policy development instead of just letting someone else to all the work and then grabbing the results for themselves. Maybe international policies would be better if everybody contributed equally. Multiple perspectives are almost always better than lazily relying on one person or group to come up with the answers.

The CDC's invention of CFS was a terrible move for PWME. How stupid for other countries to follow without doing their own investigations. As my mother used to say, "If your friends jumped off a cliff, would you blindly follow and jump off the cliff, too, or are you going to think for yourself?"
 

halcyon

Senior Member
Messages
2,482
How stupid for other countries to follow without doing their own investigations.
Don't forget that the British worked with the CDC on the 1994 criteria.

Also the US and the UK are the countries with the most documented outbreaks. It's unclear if this reflects actual incidence or just reporting though. You have to remember that ME and CFS as a diagnosis probably don't exist in many countries.
 

Hip

Senior Member
Messages
17,824
Don't forget that the British worked with the CDC on the 1994 criteria.

Indeed.

This international scientific fiasco and perversion of the course of science in ME/CFS was a US-UK collaborative effort, with UK supplying the psychological mumbo-jumbo necessary to form the "intellectual" backbone behind the concept of "CFS", and the US providing corporate lobbying and the regulatory muscle and authority to establish this mumbo-jumbo as an accepted medical practice.

But actually, behind the scenes in both countries, I suspect the insurance industry was pulling many of the strings — in the UK by supporting the Wessely School (who would have likely remained in obscurity had the insurance industry not found them useful); and in the US by lobbying government.