Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really?

By David Tuller, DrPH

David Tuller is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley.

In my initial story on Virology Blog, I charged the PACE investigators with violating the Declaration of Helsinki, developed in the 1950s by the World Medical Association to protect human research subjects. The declaration mandates that scientists disclose “institutional affiliations” and “any possible conflicts of interest” to prospective trial participants as part of the process of obtaining informed consent.

The investigators promised in their protocol to adhere to this foundational human rights document, among other ethical codes. Despite this promise, they did not tell prospective participants about their financial and consulting links with insurance companies, including those in the disability sector. That ethical breach raises serious concerns about whether the “informed consent” they obtained from all 641 of their trial participants was truly “informed,” and therefore legitimate.

The PACE investigators do not agree that the lack of disclosure is an ethical breach. In their response to my Virology Blog story, they did not even mention the Declaration of Helsinki or explain why they violated it in seeking informed consent. Instead, they defended their actions by noting that they had disclosed their financial and consulting links in the published articles, and had informed participants about who funded the research–responses that did not address the central concern.

“I find their statement that they disclosed to The Lancet but not to potential subjects bemusing,” said Jon Merz, a professor of medical ethics at the University of Pennsylvania. “The issue is coming clean to all who would rely on their objectivity and fairness in conducting their science. Disclosure is the least we require of scientists, as it puts those who should be able to trust them on notice that they may be serving two masters.”

In their Virology Blog response, the PACE team also stated that no insurance companies were involved in the research, that only three of the 19 investigators “have done consultancy work at various times for insurance companies,” and that this work “was not related to the research.” The first statement was true, but direct involvement in a study is of course only one possible form of conflict of interest. The second statement was false. According to the PACE team’s conflict of interest disclosures in The Lancet, the actual number of researchers with insurance industry ties was four—along with the three principal investigators, physiotherapist Jessica Bavington acknowledged such links.

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.

The Lancet published the PACE results in February, 2011; the undated Swiss Re article was published sometime within the following year or so. The headline: “Managing claims for chronic fatigue the active way.” (Note that this headline uses “chronic fatigue” rather than “chronic fatigue syndrome,” although chronic fatigue is a symptom common to many illnesses and is quite distinct from the disease known as chronic fatigue syndrome. Understanding the difference between the two would likely be helpful in making decisions about insurance claims.)

The Swiss Re article noted that the illness “can be an emotive subject” and then focused on the implications of the PACE study for assessing insurance claims. It started with a summary account of the findings from the study, reporting that the “active rehabilitation” arms of cognitive behavioral therapy and graded exercise therapy “resulted in greater reduction of patients’ fatigue and larger improvement in physical functioning” than either adaptive pacing therapy or specialist medical care, the baseline condition. (The three intervention arms also received specialist medical care.)

The trial’s “key message,” declared the article, was that “pushing the limits in a therapeutic setting using well described treatment modalities is more effective in alleviating fatigue and dysfunction than staying within the limits imposed by the illness traditionally advocated by ‘pacing.’”

Added the article: “If a CFS patient does not gradually increase their activity, supported by an appropriate therapist, then their recovery will be slower. This seems a simple message but it is an important one as many believe that ‘pacing’ is the most beneficial treatment.”

This understanding of the PACE research—presumably based on information from Peter White’s web-based discussion—was wrong. Pacing is not and has never been a “treatment.” It is also not one of the “four most commonly used therapies,” as the newsletter article declared, since it has never been a “therapy” either. It is a self-help method practiced by many patients seeking the best way to manage their limited energy reserves.

The PACE investigators did not test pacing. Instead, the intervention they dubbed “adaptive pacing therapy” was an operationalized version of “pacing” developed specifically for the study. Many patients objected to the trial’s form of pacing as overly prescriptive, demanding and unlike the version they practiced on their own. Transforming an intuitive, self-directed approach into a “treatment” administered by a “therapist” was not a true test of whether the self-help approach is effective, they argued–with significant justification. Yet the Swiss Re article presented “adaptive pacing therapy” as if it were identical to “pacing.”

The Swiss Re article did not mention that the reported improvements from “active rehabilitation” were based on subjective outcomes and were not supported by the study’s objective data. Nor did it report any of the major flaws of the PACE study or offer any reasons to doubt the integrity of the findings.

The article next asked, “What can insurers and reinsurers do to assist the recovery and return to work of CFS claimants?” It then described the conclusions to be drawn from the discussion with White about the PACE trial—the “key takeaways for claims management.”

First, Swiss Re advised its employees, question the diagnosis, because “misdiagnosis is not uncommon.”

The second point was this: “It is likely that input will be required to change a claimant’s beliefs about his or her condition and the effectiveness of active rehabilitation…Funding for these CFS treatments is not expensive (in the UK, around £2,000) so insurers may well want to consider funding this for the right claimants.”

Translation: Patients who believe they have a medical disease are wrong, and they need to be persuaded that they are wrong and that they can get better with therapy. Insurers can avoid large payouts by covering the minimal costs of these treatments for patients vulnerable to such persuasion, given the right “input.”

Finally, the article warned that private therapists might not provide the kinds of “input” required to convince patients they were wrong. Instead of appropriately “active” approaches like cognitive behavior therapy and graded exercise therapy, these therapists might instead pursue treatments that could reinforce claimants’ misguided beliefs about being seriously ill, the article suggested.

“Check that private practitioners are delivering active rehabilitation therapies, such as those described in this article, as opposed to sick role adaptation,” the Swiss RE article advised. (The PACE investigators, drawing on the concept known as “the sick role” in medical sociology, have long expressed concern that advocacy groups enabled patients’ condition by bolstering their conviction that they suffered from a “medical disease,” as Michael Sharpe, another key PACE investigator, noted in a 2002 UNUMProvident report. This conviction encouraged patients to demand social benefits and health care resources rather than focus on improving through therapy, Sharpe wrote.)

Lastly, the Swiss Re article addressed “a final point specific to claims assessment.” A diagnosis of chronic fatigue syndrome, stated the article, provided an opportunity in some cases to apply a mental health exclusion, depending upon the wording of the policy. In contrast, a diagnosis of myalgic encephalomyelitis did not.

The World Health Organization’s International Classification for Diseases, or ICD, which clinicians and insurance companies use for coding purposes, categorizes myalgic encephalomyelitis as a neurological disorder that is synonymous with the terms “post-viral fatigue syndrome” and “chronic fatigue syndrome.” But the Swiss Re article stated that, according to the ICD, “chronic fatigue syndrome” can also “alternatively be defined as neurasthenia which is in the mental health chapter.”

The PACE investigators have repeatedly advanced this questionable idea. In the ICD’s mental health section, neurasthenia is defined as “a mental disorder characterized by chronic fatigue and concomitant physiologic symptoms,” but there is no mention of “chronic fatigue syndrome” as a discrete entity. The PACE investigators (and Swiss Re newsletter writers) believe that the neurasthenia entry encompasses the illness known as “chronic fatigue syndrome,” not just the common symptom of “chronic fatigue.”

This interpretation, however, appears to be at odds with an ICD rule that illnesses cannot be listed in two separate places—a rule confirmed in an e-mail from a WHO official to an advocate who had questioned the PACE investigators’ argument. “It is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive,” wrote the official to Margaret Weston, the pseudonym for a longtime clinical manager in the U.K. National Health Service.

Presumably, after White disseminated the good news about the PACE results at the web-based discussion, Swiss Re’s claims managers felt better equipped to help ME/CFS claimants. And presumably that help included coverage for cognitive behavior therapy and graded exercise therapy so that claimants could receive the critical “input” they needed in order to recognize and accept that they didn’t have a medical disease after all.

In sum, contrary to the investigators’ argument in their response to Virology Blog, the PACE research and findings appear to be very much “related to” insurance industry consulting work. The claim that these relationships did not represent “possible conflicts of interest” and “institutional affiliations” requiring disclosure under the Declaration of Helsinki cannot be taken seriously.

Update 11/17/15 12:22 PM: I should have mentioned in the story that, in the PACE trial, participants in the cognitive behavior therapy and graded exercise therapy arms were no more likely to have increased their hours of employment than those in the other arms. In other words, there was no evidence for the claims presented in the Swiss Re article, based on Peter White’s presentation, that these treatments were any more effective in getting people back to work.

The PACE investigators published this employment data in a 2012 paper in PLoS One. It is unclear whether Peter White already knew these results at the time of his Swiss Re presentation on the PACE results.

Update 11/18/15 6:54 AM: I also forgot to mention in the story that the three principal PACE investigators did not respond to an e-mail seeking comment about their insurance industry work. Lancet editor Richard Horton also did not respond to an e-mail seeking comment.

Comments on this entry are closed.

  • uab9876

    One of the things that makes insurance companies uncomfortable is where they cannot easily quantify risks and costs. In pushing the line that CBT/GET can help get patients back to work (one not supported in their papers) they are misleading the actuaries who calculate premiums. This could have the effect that insurance companies such as Swiss Re are taking on far more risk than they otherwise would have been comfortable with if they were told that treatments do not lead to changes in employment status or benefit claims. So they are not really helping the insurance industry apart from helping them deal with previous bad advice by not paying out.

    Also interesting if they are trying to pick up paying patients here based on exaggerated claims within papers should this fall under the advertising standards authority. Or some other authority.

  • joyscobby

    The fact that the PACE Trail was part funded by the UK Department of Work and Pensions (DWP) should of been declared from the outset to participants on an ethical basis. (DWP) Social Security Benefits and in particular Sickness Income Benefits are in fact a State Owned Insurance Scheme based on (National) Insurance Contributions. However,
    there has been increasing involvement and influence on policy from private companies. see “Private firms’ role in creation of disability assessment regime”
    http://www.theguardian.com/society/2012/sep/12/private-firms-disability-assessment-regime

  • Findlow

    Yes, the influence of private firms goes back years, notably UNUM from 1994:

    “Behind the scenes it has been helping Tory and Labour governments slash
    the benefits of disabled and sick people for years – going right back to
    Peter Lilley’s social security “Incapacity for Work” reforms of 1994.
    Lilley hired John Le Cascio, then vice-president of Unum, to advise on
    “claims management”. Le Cascio also sat on the “medical evaluation
    group”, which – according to Professor Jonathan Rutherford in the
    academic journal Soundings – was set up to design and enforce more
    stringent medical tests.”

    http://www.private-eye.co.uk/sections.php?section_link=in_the_back&issue=1301&article=450

    http://blacktrianglecampaign.org/2012/09/09/dwpunumatos-scandal-professor-simon-wessely-it-is-only-human-for-doctors-to-view-the-public-as-foolish-uncomprehending-hysterical-or-malingering/

    It stinks; it always has, and the repercussions of all this are immeasurably harmful and unjust to severely chronically sick and disabled people.

    Many, many thanks David Tuller, for so comprehensively adding this vital information to your series of excellent articles.

  • A.M.

    In 2012, results from the PACE trial were published which demonstrated that CBT and GET did not help trial participants return to work after 52-week followup from baseline:

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

    “Receipt of benefits due to illness or disability increased slightly from baseline to follow-up (Table 4). Patients in the SMC group had the lowest level of receipt at baseline but the figures at follow-up were similar between groups. Relatively few patients were in receipt of income-related benefits or payments from income protection schemes and differences between groups were not substantial.”

  • GQ

    The PACE trial Principal Investigators now respond to David Tuller:

    “No insurance company was involved in any aspect of the trial. There were some 19 investigators, three of whom have done consultancy work at various times for insurance companies. This was not related to the research and was listed as a potential conflict of interest in the relevant papers. The patient information sheet informed all potential participants as to which organizations had funded the research, which is consistent with ethical guidelines.”

    The PACE trial researchers here obfuscate and obscure the facts.

    1. There were 3 Principal Investigators. The other 16 referred to were not Principal Investigators.

    2. The Principal Investigators were ultimately responsible for designing the PACE trial and obtaining funding for the PACE trial.

    3. The 3 Principal Investigators of the PACE trial were (a) Peter White, (b) Michael Sharpe and (c) Trudy Chalder

    4. The 3 that had conflicts of interest with insurers and reinsurers and therefore a vested interest were (a) Peter White, (b) Michael Sharpe and (c) Trudy Chalder.

    5. Therefore 3 out of 3 or 100% of the Principal Investigators had conflicts of interest with the insurance and reinsurance industry who had a vested interest in the PACE trial.

  • GQ

    The link between the insurers and reinsurers is being significantly downplayed by the Principal Investigators of the PACE trial.

    The Principal Investigators of the PACE trial are Peter White, Michael Sharpe and Trudy Chalder.

    Peter White is a medical officer of Swiss Re (a reinsurer) and other insurers. Michael Sharpe is a consultant with Aegon (an insurance company) and associated with UNUM. Trudy Chalder has not declared which insurance companies and the number of insurance companies she has worked for.

    It is important to understand the reinsurance business and how it affects insurance companies and their policyholders. Insurance companies reinsure their liability to claims with reinsurance companies. There are a very large number of insurance companies but only a handful of reinsurance companies in the world. Swiss Re is the second largest reinsurer in the world and one of the largest reinsurers of disability policies. Insurance companies can cede a majority or even up to 90% of the liability of the claims to reinsurers. Therefore the reinsurance company may carry a higher liability to claims than the insurance company itself that the policyholder is insured with. Policyholders with an insurer will be unaware of the reinsurance arrangement that their insurance company has with the reinsurer that will be liable for the claim. Policyholders will also be unaware of the identity of that reinsurer. In the event of a claim, the reinsurance company will be involved with the insurance company in managing that claim.

    It is well documented that policyholders and people with ME/CFS have disproportionately had problems with making claims to insurers and being wrongly denied over the last two decades. In fact in the last two decades since the small number of psychiatrists became involved with ME/CFS, insurers have targeted ME/CFS claims for denial. Most disability insurers will have reinsured their liability to a reinsurer such as Swiss Re.

    In the case of ME/CFS, claims are denied:
    (a) on the false basis that it is psychiatric
    (b) of the use of exclusion clauses for ME/CFS
    (c) by re-diagnosing the ME/CFS as psychiatric disorder
    (d) that ME/CFS can be simply cured by effective treatments of CBT and GET (PACE trial treatments) and claims not accepted until these treatments have been undertaken and if such treatments do not work in that patients particular situation, disability benefits are denied on the basis that patients lack motivation to get better or are malingering.

    A conflict of interest with a re-insurer therefore is one of the most serious conflicts that a medical researcher could have.

    None of the PACE trial investigators have still specifically detailed the amount of financial remuneration that they received from their respective insurers and reinsurers during the period of the PACE trial.

  • Mike Dean

    Some posts mention Jonathan Rutherford’s article, “New Labour, the market state, and the end of welfare”. It can be found here:
    http://www.midmoors.co.uk/Unum/unum_in_uk.pdf

  • Daisy

    The impact that the likes of PDW have on insurance claims is very real and tangible.

    I had my TPD claim refused on the advice of PDW working for Swiss Re (doing a paper review) on the basis that I had not had ‘optimal treatment’ of CBT/GET as recommended by NICE. This was despite the fact that CBT/GET is not recommended for the severely affected. I had been diagnosed as severely affected by a specialist consultant with ME/CFS (not depression) and the clinic wrote a letter confirming that I had tried everything that they felt was clinically appropriate, and that there was nothing further to try (other than self management).

    In addition the insurer had sent a psychiatrist to ‘assess’ me who diagnosed depression only. Initially I had been incorrectly diagnosed with depression by my GP, prescribed CBT, a number of different AD’s, and sent to the hospital gym (as exercise makes you feel better). None of this halted the decline in my health.

    The insurer refused to state what they believed my diagnosis to be (ME/CFS, depression or both, or something else entirely) but maintained the position that whatever my diagnosis CBT/GET was a treatment option that should be pursued. They put me under surveillance, and did not hesitate to lie to me and mislead me when I contacted them. They were obstructive and as awkward as possible. It seems to me that if they decide to contest the claim they do whatever they can to close without payment. They refused to tell me what evidence they required to satisfy the claim. I made an application under the DPA for a copy of their paperwork, and it was very interesting reading their internal notes on my claim.

    Eventually I got a solicitor involved (by then I had 3 specialist consultant reports confirming diagnosis and prognosis – including from a psychiatrist who confirmed the diagnosis of ME/CFS rather than depression). Once the solicitor was involved they paid up. Still over a number of years PDW gave them the cover they needed to refuse my claim and to delay in the hope that they would wear me out and I would give up. I’m sure some people do give up, it is an exhausting and stressful process.

    Even if a patient has undertaken CBT/GET the insurer may argue that they undertook the ‘wrong’ sort and insist that they try again. Or that the patient didn’t engage with the CBT/GET fully so it is their fault they haven’t improved, and they must try again. And of course in much of the country the ‘right’ sort of CBT/GET is not available. The claimant in then in a ‘limbo’ where they are unable to complete the requirement of ‘optimal treatment’ required by their insurer on the advice of PDW. Jessica Bavington did ring me at one point to offer her ‘help’ but the insurer did not pursue this avenue after I wrote and queried who would be paying for this ‘help’

    Depending on the policy, and the level of cover TPD and income protection the like may be worth tens if not hundreds of thousands of pounds. Both the likes of Swiss Re and PDW do very nicely out of it thank you very much enabling the refusal and delay of valid claims. There is a massive investment in maintaining the CBT/GET fallacy. They have no shame.

  • Valentijn

    I think it’s really starting to become clear how their ties to the insurance industry have polluted and twisted their research and statements about it. Chalder and Sharpe have long been opposed to disability benefits for ME/CFS patients until CBT/GET is tried, despite the extremely flimsy evidence:

    “When asked to comment on benefits or insurance claims we support the patient as much as is possible, but do not support claims for permanent disability or medical retirement until all reasonable efforts at rehabilitation have been tried.” Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

  • Willbeat CFS

    There is a keyword that must be emphasized, and it is ” possible.”  The Helsinki agreement does not ask what affiliations HAVE happened and it does not ask what affiliations ARE happening or even what affiliations WILL happen. No, it asks what affiliations MAY happen, that is, what are possible.

    While one could argue that anything is possible, it is unlikely I will be on a moon shot. It is also unlikely that I would rob a bank. In the first instance, I am do not have the professional qualifications, and in the second instance I do not have the moral qualifications.,. It is clear from past action that these principal researchers had the skill set to consult with insurance companies and had the moral direction to likewise do so. That certainly would raise the possibility that it would be a possibility.

    The fact that they later did consult with companies confirm that absolutely had been a possibility. The fact that they used the PACE study in that consultation shows that the study itself would have been, because in fact it was, interesting to an intercom insurance company. This means that both sides of the argument had reason to suspect that they would have a mutually advantageous piece of work when the study completed.. I have a hard time believing anyone could fail to find a way that it was not a possibility that they might consult.

    My question from this is, what follows? Are there any teeth in the law such as being banned from being a principal investigator or banned from future research in that subject or fined or whatever? Or is it that the research is retracted or is somehow marked as tainted?

  • tomkindlon

    One person with ME/CFS described Peter White’s involvement in her insurance case at this link:

    http://getinsuranceadvice.com/critical-illness-a-dreadful-experience-with-scottish-provident/

  • tomkindlon

    I think this was originally posted to this thread which might be easier to read:
    http://forums.moneysavingexpert.com/showthread.php?t=2356683

  • Mary Schweitzer

    Peter White was chair of the 3-person committee at CDC which evaluated the CDC’s 5-year program on CFS. After that, CDC put a hard link on its website on CFS to St. Bart’s – to White’s psychiatric clinic in London (after many complaints, the hard link was eventually removed but not the reference to his practice). There was no link to any US specialist.

    While chair of the committee, White was required to fill out a conflict of interest form. He wrote that he had no conflicts of interest and wrote on the form that CDC was not paying him. This was in 2009. I am not sure whether he was still Chief Medical Officer of Scottish Provident at the time or was already working for Swiss RE, but whether or not he was getting paid by CDC for chairing that committee was irrelevant to the requirement that he disclose conflicts of interest.

  • fractal

    “It is difficult to get a man to understand something, when his salary depends on his not understanding it.”

  • Mary Schweitzer

    I want to make it clear that he was definitely working for one or both of those insurance companies in 2009.

  • Greg Crowhurst

    It is not just the Insurance Industry, the investigator’s involvement with the Department of Work and Pensions, a co-funder of the PACE Trial, are documented here http://www.meactionuk.org.uk/PACE-PIs-and-the-DWP.htm

  • Sandra

    Incredible misconduct and betrayal of patients. So much suffering added to those already suffering from a devastating, debilitating disease. Shame on them.

  • MrsKramer

    To my knowledge, all gov’t research being done to advance the understanding of environmentally induced illnesses first requires the blessing of insurers.

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  • Christian Godbout

    Patients’ motivations have been questioned in this debate, which is somewhat odd on the part of psychiatrists, for whom motivations should not be a puzzling question… – I guess it is our turn to ask: what are THEIR motivations in clinging so steadfastly to this study?

    Now that the PACE Trial has been sharply criticized by perspicacious patients, rigorous journalists, academics and top researchers, why not “let go”? The only acceptable answer on their part should be: “Because we care for the well-being of these patients and feel that this study is in their best interest”… Hardly anyone believes that, and I doubt that even themselves would think of putting it this way…

  • Helle Rasmussen

    Just a few comments: The blog post is missing an author, like the previous articles had: By David Tuller, DrPH: And I beleave you mean Margaret Williams, not Margaret Weston. But thank you again so much for your great work about the PACE trial, David Tuller!

  • Mike Dean

    Thanks for that link. The post and a subsequent reply by the author state that she claimed in 2004 and Scottish Provident nominated PD White as their consultant assessor. If true, it shows White working on behalf of insurers while recruiting for PACE. A clear and declarable conflict of interest, years before Swiss Re and the Lancet publication.

  • nancyblake

    Despite widespread criticism of the IOM report, ‘Myalgic Encephalitis/Chronic Fatigue Syndrome: Redefining an Illness’, it is clear that, despite efforts to prevent this, the Committee smelled this particular rat. Their first recommendation is to get rid of the term ‘Chronic Fatigue Syndrome’ altogether. The report reiterates that this is a disease, not a psychiatric condition, and the name they suggest: Systemic Exertion Intolerance Disease, they clarify (on page 2, and elsewhere) means that this is a disease ‘in which exertion, of any type, may adversely affect many organ systems in the body.’ Note that this doesn’t say that we get tireder than most, it doesn’t use the word fatigue, it doesn’t even talk about ‘post exertional malaise’. It goes much further: exertion can cause extensive systemic damage.

    This description is reinforced by their firm recommendation that this illness be given it’s own ICD label, ‘not connected to Chronic Fatigue Syndrome or neurasthenia’.

    It is as though they were fully aware of what White & co were doing to harm patients with this illness and were writing recommendations to specifically counteract their lies. If ME/CFS is a ‘disease’ in which any form of exertion can do harm – ‘adversely affect’ to ‘many organ systems in the body’, then the psychiatrists are absolutely wrong: This is a serious disease, exertion does do harm. It is the psychiatrists, not the patients, who hold the ‘false beliefs’.

    Since there are so many severely or very severely ill patients who became so only after undertaking exercise, sometimes out of their own misguided determination to overcome the illness, sometimes at a doctor’s suggestion, probably most often as a result of being told by their insurer that they must undertake CBT/GET, it must be obvious to them, as well as most patients, that exercise in fact makes patients very much worse. But of course if you offer patients a ‘treatment’ which makes them so much worse that they can’t continue, then they can be denied insurance claims on the grounds of failure to cooperate. The patients themselves will spend the rest of their lives experiencing intense, intractable pain, intermittent paralysis, and complete helplessness even to care for themselves. But at least the insurers/the DWP won’t have to pay for it.

    If someone in a dark alley assaulted you in such a way that you were going to spend the rest of your life in intractable pain and completely disabled, what view do you think a court would take of the perpetrator? If you are complicit in causing this to happen to thousands of people, apparently you get a knighthood.

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  • davetuller

    thanks for noting the absence of the byline. Actually, Margaret Williams was going by Margaret Weston in that exchange or at that period. I double-checked!!

  • clark ellis

    Another brilliant blog. Thank you. Can’t say much, too sick, but grateful.

  • Blue

    Peter White also provided input into the Swedish state
    document, Fokusrapport—Kroniskt Trötthetssyndrom (2009). This report fulfills
    criteria for research misconduct/fraud and is the Swedish state insurer’s (“FK”’s)
    bible used to deny social assistance, disability rights, and proper medical
    care to people with ME/CFS in Sweden. The state courts back up whatever misinformation FK submits, ignore evidence and doctor statements that negate FK’s misinformation, and then destroy court records shortly after they rule in favor of FK.

    Additionally and according to Justice for Karina Hansen, Peter White also provided input into the Danish state’s abuse of ME patient, Karina Hansen. Denmark’s Hansen and the US’ Justina Pelletier were seized by their respective states within two days of one another (in 2013), and while Pelletier is now long since free, Hansen remains imprisoned and denied the right to see her family or them her.

    The proverbial keys to Hansen’s literal cell are held by Danish psychiatrist Per Fink and his work, according to Danish physician Stig Gerdes, has received millions in funding from TryghedsGruppen of which the Scandinavian-wide insurer Tryg is a subsidiary. (Note too that according to Justice for Karina Hansen, Hansen’s state-appointed guardian is the same police chief who provided Fink with the armed police who forcefully took Hansen from her home.)

    Consider that American-Dane Rick Steele has said,“The common endpoint for these syndromes [“medically unexplained syndromes”, described as including
    GWS, CFS PVS, etc.] is a disability pension. The enormity of this problem
    boggles the mind. Merely supporting this group of patients financially rivals
    half of the public outlays for health care or social benefits in northern
    European countries…”

    And now–just as Swedish leaders admit to being out of
    money–politicians in the Swedish county of VG have voted to close an ME
    biomedical research clinic and redefine ME as a psychological illness to be
    diagnosed and “treated” according to Fink’s model.

    Remember too that “this group of patients” is made up
    primarily of women. And remember too that several decades ago, finances (perhaps
    too coupled with a culture of conformity and Jante rules) motivated Scandinavia’s
    high rates of lobotomizing women.

    US psychiatrist Elliot Valenstein said in 1988: “When I
    began to summarize the factors responsible for the proliferation of lobotomy it
    became evident that all of them still influence the practice of medicine…
    desperate patients.. unreliable claims of cures.. flawed data… desire for
    “name and fame.”…media… Economic pressures… Competition between
    medical specialties.. and physicians and hospital administrators continue to
    search for new applications for new procedures once the staff and facilities
    are in place. It is even possible to argue that some of the factors that shaped
    the early history of lobotomy are more influential today..”

    It seems that the environment which fostered lobotomy is
    very similar to the environment which fosters CBT/GET today. And cash-strapped
    politicians and ethics-deficient medical persons seem quite happy, now just as
    then, to build their livelihoods upon human rights violations*–a decades-long
    nightmare and narrative well-framed by the Thirty-six Stratagems. To how many
    countries does White and co.’s influence extend?

    (*The European Court of Human Rights states that member
    states have a positive obligation to protect their citizens from harm. ME-targeted
    CBT/GET = known harm = ECHR violation.)

  • deboruth

    I have read the account and am struck by two direct harms coming variously from PD White, other psychiatrists and the insurers:
    1. As it is documented that GET makes a majority of patients worse and causes many to change from disabled to bedbound or housebound insistence on GET strikes me as a form of deliberate harm, and therefore possibly a criminal offence as well as civil cause for payment of damages.
    2. Insisting that patients who are not depressed take medicine for depression can be another deliberate harm in many cases. SSRIs down-regulate dopamine, which can make a person less possessed of energy and spirit than formerly. This would worsen a person’s symptoms, though not so permanently as GET. Thus, this would also seem to constitute cause for damages and complaint of harm, though far less than GET and not criminal.
    My view is shaped by American law. My knowledge of UK law is minimal. In the US one can cite such complaints to a litigator who works on contingency and her or she will judge whether they have a reasonable chance of success and proceed on contingency if they do, albeit often with a modest retainer charge.

    This insurance company behaviour is part and parcel of an industry-wide shift begun several decades ago to “just say no”( to quote Nancy Reagan.) Here in the US insurance cos now regularly refuse to pay or pay adequately on household damage claims as well as run of the mill healthcare insurance claims. At a dinner a doctor who had had to sue to collect six figures for cancer on his wife’s health insurance (there is a lawyer in the family, luckily) said “you always have to sue,” meaning for significant sums. In the New York area families have yet to collect for damage from hurricane Sandy because the assessment companies are paid by insurance companies and have been induced to have their engineers lie to deny claims.

    The insurers must have felt blessed indeed when they ran across White, Wessely, Sharpe, Chalder, et al. Plus, over here among us Yanks, Dr. Wm Reeves and his gang at CDC and Emory.

  • Nic

    They really do use CBT/GET like it’s faith healing, don’t they? I’m sorry you had to go through that.

  • Ken

    There have many class action lawsuits against UNUM and their affiliates. In one case, one executive if head of claims stated they denied over $132 million in claims in one quarter. This lawsuit was filed by a hedge fund investment banker who was disabled with ME/CFS under RICO, The Racketeer Influenced and Corrupt Organizations Act against Paul Revere Life Insurance. Went to the United States Court of Appeals,Ninth Circuit which upheld in part and remanded in part. http://www.lawyersandsettlements.com/features/first_unum/unum-life-insurance-provident-long-term-11.html

    Another case was filed under Racketeer Influenced and Corrupt Organizations Act RICO
    Wise vs. UNUM Provident and went to the United States Court of Appeals,Third Circuit where RICO was affirmed and remanded back to District Court
    http://openjurist.org/482/f3d/254/weiss-v-first-unum-life-insurance-company

  • Sasha

    Thank you for another great article in this series.

    The latest in the cascade of events you’ve started is a new
    #MEAction petition that focuses on getting PACE removed from US clinical
    guidelines (which influence guidelines all over the world).

    http://my.meaction.net/petitions/call-for-cdc-and-ahrq-to-investigate-pace

    PACE dominates the evidence base for ME/CFS because of its
    sheer size, and its results have been taken at face value by the CDC and AHRQ in
    their clinical guidelines.

    Please, readers, sign the petition and share it widely.
    Signatures are welcomed from all over the world, because US guidelines are
    internationally influential.

    Patients owe you a huge debt, David! I can’t tell you how
    grateful I am.

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  • Blue

    “…White was required to fill out a conflict of interest form. He wrote that he had no conflicts of interest… This was in 2009…”

    Mary, can you — or can someone — please share an official source for this information? Are official documents posted online somewhere? How can I confirm and cite this information? Thank you!

  • Boka

    Here is an article written by Professor Malcolm Hooper in Sept 2013 on ‘The Role of the Science Media Centre and the Insurance Industry in ME/CFS’. It’s a long read (sorry) but worth the effort.
    http://www.meactionuk.org.uk/The-SMC-and-its-campaign-against-MECFS.pdf

  • Mary Schweitzer

    I have a screen shot.

  • Mary Schweitzer

    Also, go to bottom of this page for what I think is a peculiar statement:

    Potential conflicts of interest of panelists

    Dr Komaroff, Dr. Lange, and Dr. White have collaborated in research with the CDC program, published research papers with staff members, and attended meetings hosted by CDC. They have never received financial payments from the CDC beyond travel and accommodation expenses.

    http://www.cdc.gov/cfs/programs/cdc_research/external_peer_review.html

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  • RustyJ

    The Swiss Re page has been taken down. Here is a copy of that page. Enjoy: https://drive.google.com/open?id=0B1hvPDijFCa3bFEyVXl6djFnZjg

  • patrick holland

    We will need listings of cases lost by insurance companies to ME / CFS people and other disabled people in courts. Criminal charges and civil charges rely on evidence and on the results of previous cases, precedents.

    Criminal Aspects
    It is a criminal offence in Britain (and other countries) to aid and abet or support in any way a person(s) involved in criminal activity. The dismissal and ignoring of all biological research into ME / CFS in over 5000 research papers, and of known biological markers, while accepting false psychiatric claims has had dire consequences for patients, ranging from terrible suffering and deterioration for many years, financial losses, break up of family and relationships, and premature deaths. The high number of deaths from ME / CFS and the enormous suffering inflicted on many patients over many years through medical neglect borne of dismissal of the disease as a psychiatric illness by medical authorities, represents criminal neglect, assault, grevious bodily harm, and may constitute manslaughter in certain cases. The harms caused by CBT and GET treatments constitute criminal acts, ranging from assault, grevious bodily harm to manslaughter. The failure to inform patients of these harms and risks represents medical negligence and the breach of the law concerning consent. The denial of government funds for biological research into ME / CFS – a denial which was orchestrated by certain influential psychiatrists meant patients were deprived of vital biological research which would provide more accurate and effective diagnostics and treatments, and this had the effect of prolonging the suffering and deterioration of patients, and causing premature deaths ; there are further criminal offences here. The conflicts of interest in research, advice given to government and government bodies, advice and guidelines given to medical doctors and medical bodies, and advice and services offered to insurance companies and the enrichment of some psychiatrists while patients were neglected, suffered and died prematurely includes more criminal offences.

    These issues will be discussed in more depth on this web page.

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