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

By David Tuller, DrPH

On November 17, 2015, a few weeks after publication of my 15,000-word investigation of the PACE trial, I posted a blog about a talk Peter White gave to Swiss Re employees on the findings from his bogus study. Professor White, of course, was the lead PACE investigator and also served–and apparently still serves–as “chief medical officer” for the insurance company.

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.

It cannot be repeated often enough that the tribunal decision from last summer, which ordered the release of the raw trial data, dismissed the claims of harassment as baseless. The tribunal found that the only credible evidence of such behavior was that Professor Trudie Chalder was once heckled during a lecture. However, the tribunal’s scathing decision hasn’t prevented these dishonest researchers from continuing their disinformation campaign against the patient community.

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!)

**********

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

By David Tuller, DrPH

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.

  • Milo Paradiso 7 August 2017, 12:12 pm

    It is deeply disturbing that White is involved with the insurance company, more than we will ever know. I wonder if there is a way to find out how much he has been paid for this throughout the years. It matters a lot.

    It makes me wonder also how retired White is, if he is still attending and presnting to such conferences, and how many more harmful papers will he publish?

  • Anton Mayer 7 August 2017, 12:19 pm

    Debbie Smith is medical officer for Swiss Re and she works at BARTS and the London School of Medicine. That’s the same place where White has worked until his (premature?) retirement. Her talk is titled “Postural Orthostatic Tachycardia Syndrome (POTS): A claims epidemic waiting to happen?”

  • Wendy Boutilier 7 August 2017, 12:25 pm

    The problem is that the more ill we are, the more invisible we become — hidden away at home and unable to participate in life. The elements of ME that are the biggest handicap, are also the biggest hurdle in terms of public perception. 25% of us are too ill to be out there coping with the challenges of life. And yet we get Peter White & Simon Wesseley announcing to the world that it is all in our heads. They conveniently turn their heads from those who are so sick for so long that they commit suicide rather than suffer one more second.

    “Major symptoms of ME? Lethargy, torpor, inability to sleep, aching joints and limbs, pain. No discoverable medical cause. No discernible medical cure. Given the intense activity of some ME sufferers, the poisonous emails, the threats, the rage, two things occurred to me. First, that their lethargy and torpor was clearly in remission. And second: that if, as most of the medical community believes, ME had a psychiatric basis, then ME was the least of their problems.”
    Taken from: “https://www.spectator.co.uk/2015/11/the-me-lobby-is-just-a-symptom-of-our-stupidity-about-mental-illness/”

  • Sean 7 August 2017, 12:39 pm

    Peter White just cannot let it go. Maybe some CBT would help…

  • Erik Johnson 7 August 2017, 12:39 pm

    Both Professor Wessely and Dr. White acknowledged that they had seen this evidence that acute-phase activation of C4A – MASP2 transcription might be a potential marker for PEM.

    It seems to me that when a researcher is in possession of this kind of information, to carry on a purely symptom based study is a very questionable omission.

    https://www.ncbi.nlm.nih.gov/pubmed/19015737
    https://uploads.disquscdn.com/images/17590d8ce98a9be0b2ad2ede588ba5e7f71e485bd8d52a34d825eb5a52312354.png Transcriptional Control of Complement
    Activation in an Exercise

    Model of Chronic Fatigue Syndrome

    >

    > Journal: Mol Med. 2008 Nov 16. [Epub ahead of print]

    >

    > Authors: Sorensen B, Jones JF, Vernon SD, Rajeevan MS.

    >

    > Affiliation: Division of Viral and Rickettsial Diseases, National

    > Center for Zoonotic, Vector-borne and Enteric Diseases, Centers for

    > Disease Control and Prevention, Atlanta, GA, USA 30333;

    >

    > NLM Citation: PMID: 19015737

    >

    >

    > Complement activation resulting in significant increase of C4a split

    > product may be a marker of post-exertional malaise in chronic

    fatigue

    > syndrome (CFS) subjects. This study was focused to identify the

    > transcriptional control that may contribute to the increased C4a in

    > CFS subjects post-exercise.

    >

    > Differential expression of genes in the classical and lectin

    pathways

    > were evaluated in peripheral blood mononuclear cells (PBMCs) using

    > quantitative reverse transcription PCR. Calibrated expression values

    > were normalized to internal (peptidylpropyl isomerase B [PPIB]) or

    > external (ribulose-1,5-bisphosphate carboxylase/oxygenase large

    > subunit [rbcL]) reference genes or geometric mean (GM) of genes

    > ribosomal protein, large, P0 (RPLP0) and phosphoglycerate kinase 1

    (PGK1).

    >

    > All nine genes tested, except mannose-binding lectin 2 (MBL2), were

    > expressed in PBMCs. At 1 hr post-exercise, C4, mannan-binding lectin

    > serine protease 2 (MASP2) and ficolin 1(FCN1 ) transcripts were

    > detected at higher levels (>/= 2-fold) in at least 50% (4 out of 8)

    > of CFS subjects that increased to 88% (7 out of 8) CFS subjects when

    > subjects with over-expression of either C4 or MASP2 were combined.

    > Only increase in MASP2 transcript was statistically significant

    > [PPIB, p=0.001; GM, p=0.047; rbcL, p=0.045]). This may be due to the

    > significant but transient down-regulation of MASP2 in control

    > subjects (PPIB, p = 0.023; rbcL, p = 0.027). By 6 hrs post-exercise,

    > MASP2 expression was similar in both groups.

    >

    > In conclusion, lectin pathway responded to exercise differentially

    > between CFS and controls subjects. MASP2 down-regulation may act as

    > an anti-inflammatory acute-phase response in healthy subjects,

    > whereas its elevated level may account for increased C4a and

    > inflammation mediated post-exertional malaise in CFS subjects.

    ———————————————————————————————-

    MEActionUK · Welcome to the home of UK ME Campaigning
    #48366 of 72861
    Sat Jan 31, 2009 3:04 pm |
    Remember the significance of the VO2 Max test…. the variable level
    of oxygen uptake, and also remember Immune Complement Activation Factor
    C4A.

    It might prove handy later.

    -Erik

  • Lady Shambles 7 August 2017, 12:44 pm

    Very appreciative that you’re keeping the pressure on. Interesting times.

  • Paul Fox 7 August 2017, 12:50 pm

    White is the 21st-century incarnation of Matthew Hopkins. Only he and a few disciples know what marks to look for, and where to look for them.

  • Kaycee 7 August 2017, 1:13 pm

    It is indicative that both the CFS and POTS presentations are under the discussion label: THEME VI: Somatic and psychiatric disorders and how they affect claims.

    POTS is often found in patients who fit the criteria for ME in the International Consensus Criteria. It also is not a psychiatric disorder.

  • Claudia Goodell 7 August 2017, 1:15 pm

    It is evident that the PACE Trial and publication have clearly been debunked by real and decent science.
    Contrary to what the authors and proponents of the publication claim, the treatments touted in the publication and through subsequent decades of exposure are no more effective at getting very sick people, those with ME/CFS, back to work than any other available treatment. Add to this absence of science a multitude of conflicts of interest surrounding this publication and one wonders how it ever gained any momentum in the first place. The only thing holding up the PACE paradigm is a thin and false belifief that ME/CFS is a condition with a psychological etiology. Now, a July 31, 2017 publication by Jose Montoya et al out of Stanford University is rife with scientific data supporting the truth, that ME/CFS clearly has a physiological basis, one in which multiple cytokine expression correlates with severity of disease. It is time for White et al to exit stage left. He should never have received any pay for this conflicted positions, nor should he or anyone else be allowed to publicly speak about PACE if affiliated with the insurance company.

  • Anton Mayer 7 August 2017, 1:17 pm

    The way these insurance companies influence science and public perception is unethical and destructive. If a high number of disability claims threaten their profits, why are they not simply updating their prices to reflect this reality? Why not fund research into better diagnostics and prevention? Instead they appear to be engaging in a doubt & disinformation campaign that has inflicted terrible suffering and may have delayed useful treatments by decades. Many ME/CFS patients believe that early diagnosis and sensible advice would have resulted in better outcomes. Instead, medics are given false information and patients are made worse by GET or by the consequences of perception that they should remain active even when they feel ill.

  • Erik Johnson 7 August 2017, 1:28 pm

    Part of the “disinformation campaign” is the deliberate omission of evidence, which skews people’s perceptions of the conceptual framework regarding what is known about the disease.

  • Amy McLaughlin 7 August 2017, 1:32 pm

    The PACE Trial, given its laughably flawed structure, was never intended to be anything other than a justification for denying disability benefits to seriously ill, genuinely disabled people, carried out by doctors who are consultants to the insurance industry. The PACE researchers continue to ignore the mountain of biological data bearing out exactly what astute clinicians like Melvin Ramsay discerned many years ago, that this is a serious disease involving inflammation of the brain and spinal cord. They ignore, for example, the work of Betsy Keller and others showing ME patients’ inability to utilize oxygen properly; the work of A.R. Light (et al) showing abnormal gene expression following activity; and studies, including Nakatomi and Mizuno’s 2014 work that concluded there is widespread inflammation in ME patients’ brains. The study will live as a scandalous example of dishonest science, disgracefully enabled by the Lancet.

  • Star Man 7 August 2017, 1:32 pm

    In a nutshell, insurance companies are just passing the cost of long term care onto society in order to reduce their own costs.

  • Elle See 7 August 2017, 1:40 pm

    One day, patients will come first and the #PACETrial debacle will be behind us. Thank you, Dr. Tuller, for making that day come a little sooner.

  • Peter Trewhitt 7 August 2017, 2:06 pm

    This persistent ‘bending’ of the truth by Prof White and the other PACE appologists cummulatively must by now represent a conscious attempt to mislead. They answer different questions than those asked with partial truths that effectively are lies.

    Thank you to all that are challenging what now can only be a cynical exploitation of ME/CFS research and the patient community. For Prof White, stupidity or ignorance is no longer a valid excuse, only financial self interest and self promotion seem to explain his actions.

  • Valentijn 7 August 2017, 2:16 pm

    It’s interesting that Jessica Bavinton is insurance lackey #4. Based on the ridiculous and untrue things she’s said, I assumed she was a complete idiot who somehow completed a degree and built a career regardless. I suppose it’s reassuring to know that she’s just another insurance industry shill who’s sold her soul.

  • LateToTheParty 7 August 2017, 2:54 pm

    My medical provider still follows the PACE protocol. When first diagnosed with CFS, I ignorantly tried CBT and GET. I only got worse (went from 5 minutes on a bike to 4, to 3, to BEDBOUND for weeks.) By adhering to the PACE protocol my getting effective treatment was delayed for years (finally got anti-viral medications, thank you Stanford!). So please Mr. White, now that you’ve “retired” why not just disappear and leave CFS to the experts. You and your colleagues have caused more harm than good. And thank you David Tuller for being our voice.

  • LateToTheParty 7 August 2017, 2:55 pm

    Smile. I needed that!

  • Lady Shambles 7 August 2017, 3:30 pm

    The Wessely School seem remarkably tenacious. They retire and/ or confirm they have long left the debate and yet remain ever central. Their assertions about leaving the field cannot be relied upon to be truthful any more than their theories or published papers.

  • Lois Addy 7 August 2017, 3:32 pm

    From my somewhat hazy recollection (it being nearly a decade since I started the PACE trial and I had no idea that I should be paying attention cos it would matter afterwards, I do remember my therapist (was on the CBT at Kings) being super happy that I’d only reduced my working hours and not ‘quit’ working. I have the recollection that I was the only one who’d kept working. (I’d need to check my paperwork to be sure and it’s packed for a house move that will happen eventually). So on my own personal empirical experience, I’d have thought that people staying in work would have been fairly exceptional, and increased hours pretty unlikely overall…

  • Lisa Petrison 7 August 2017, 3:38 pm

    This is very disturbing.

  • Lois Addy 7 August 2017, 3:40 pm

    but that’s not what I understood it to be when I joined it. I thought it was a genuine attempt to see if CBT/GET etc could help. I went into it, thinking well, if it works or if it doesn’t, I’ll have added to the sum of human knowledge (or excluded things at least), and also, they promised me the treatment of my choice if it didn’t work afterwards. It wasn’t their fault they had staffing difficulties at the end and couldn’t follow my CBT on PACE with a course of actual Pacing (ie coping with daily life in reality by rationing my energy) even though the GET lady said she could do this if I signed up for GET, I’m sure she would have, but I was too scared and said no. then I moved away.

    And the actual way the staff at the unit behaved towards me, I honestly believed they saw it like that too. They knew there weren’t any answers that were easy, no magic bullet, and my therapist was dismayed enough to put it in his report letter to my GP that I’d worked really hard at it, and it should have worked but didn’t (my words not his). He was flummoxed as to how I’d ended up doing less and not more by the end. As was I. Honestly, they were genuinely trying really hard to help me manage symptoms and improve. (pointlessly as it turns out, but those therapists were making an effort. And. I do wonder what they make of the kerfuffle over the Pace Trial being bad science, cos no-one ever says, but what about the therapists? what did they think? how do they feel about their hard work being trashed cos the lead researchers decided to torture the data afterwards?)

    I find this to be a real disconnect between my experience of the staff during the trial, and how the trial ‘results’ have been spun in papers afterwards. It genuinely didn’t feel cynical or underhand. (and I’m not a credulous idiot. Well it’s likely I may be now, but back then I had a damn good career troubleshooting failing teams in the area of personal tax for banks, accountancy and law firms. Trust me, I had the skills to tell if someone was pulling wool over my eyes or not at the time!)

    I find it very difficult to square my actual knowledge of what happened to me and my health with how the Papers have been presented. My beef is not with the trial itself and how it was run for participants, but with the way the data has been tortured since.

  • Lois Addy 7 August 2017, 3:44 pm

    Yes. thankfully re debunking. And I support what David is doing, it’s important that researchers are held to high standards and to their own protocols!

    I think that when the biomedical research currently being done bears fruit, it will be the nail in teh coffin. but until then… and anyway afterwards, we should be upholding best practice and care of the sick individual.

    One thing that struck me about the childish name calling in the Times after that entire publication the other day was on PACE was not a single damn one of them seemed to care at all that the PACE Trial has affected real people. we aren’t cardboard cutouts or just numbers. We’re people. I think the PACE chief researchers have forgotten that – otherwise, how could they justify (morally) torturing the data like they did to produce results that don’t hold water.

  • Anil van der Zee 7 August 2017, 3:44 pm

    Great to see that Dr. David Tuller once again covers the situation in Switzerland. Not a big surprise I received GET in the Inselspital in Bern once I got ill. Sadly nothing seems to have changed. I hope the younger generation of doctors will slowly move away from this unproven hypothesis.

  • Peter Trewhitt 7 August 2017, 4:35 pm

    Obviously there is no evidence that CBT and GET have any benefit for people with ME/CFS, and a lot of survey evidence that GET is harmful, but it interesting to ponder how practitioners attempt to implement it.

    Some comments I have read about GET is that some practitioners have sincerely tried to make it responsive to the patient, to scale back if any negative signs appear and to judge increments not on some arbitrary figure but on the capacity the patient. It seems that GET in this form has a lot of overlap with pacing.

    However, you also read so often that other practitioners impose external arbitrary increments and actively encourage patients to disregard their own body. The main risk of GET is that it was set up on the basis of the patient is wrong, and that the practitioner should encourage the patient to disregard their own responses.

    In terms of psychotherapy there was some research I read many years ago basically suggesting that it was not the therapy that is good or bad, rather than the therapist. A problem with GET and PACE based CBT is that they are designed to be stand alone packages that do not require an experienced or sensitive practitioner, and their theoretical basis makes them attractive to practitioners ready to accept a theoretical position that the patient is wrong.

  • Amy McLaughlin 7 August 2017, 4:37 pm

    I am sure you are not credulous and very obviously not an idiot! I realize there are people who genuinely think that ME is deconditioning. That, however, is ignorance, and I don’t think it’s excusable in professionals who have peoples’ health and well being in their hands. The disease had long since been well described, including its cardinal feature of exacerbations, sometimes severe ones, following even minor activity, long before PACE. What patients all over the world were telling doctors was consistent with this, and yet this group — Prof. Wessely and co. — dismissed all this, and their statements all sound very contemptuous of patients. I wonder about the training and acumen of not only doctors but therapists who could not recognize an organic disease (nausea, headaches, neck pain, paresthesias, etc.). As part of getting disability way back when, I had to see not one, but two psychiatrists. Both said emphatically that everything they were hearing was consistent with physical illness. Obviously, I did not have your experience, I wasn’t a participant in this trial. I was pushed, though, by very angry doctors, to keep going when I was first sick — I ended up in complete collapse, bedridden for a time. The information was out there, for anyone who bothered to do some research, and also in what patients were trying to tell people. And perhaps therapists should consider whether they are qualified to make medical judgments.

  • Sheila Campbell 7 August 2017, 6:12 pm

    It’s worth noting that Professor White was certainly chief medical officer for Swiss Re as far back as 2003.

    http://www.margaretwilliams.me/2003/notes-on-insurance-issue-in-me.pdf

    Notes on the involvement of Wessely et al with the Insurance Industry and how they deal with ME/CFS claims

    Margaret Williams 17th June 2003
    “These insurance companies all seem to be involved in RE-INSURANCE; for example, Norwich Union uses Swiss Re and psychiatrist Peter White is one of the Chief Medical Officers for Swiss Re. Their other “CFS experts” are Michael Sharpe and Simon Wessely, and they also use psychiatrist Anthony Cleare (a frequent coauthor with Wessely who works in the same department) for the insurers. ”

    And the PACE trial was officially registered by White on 22nd May 2003, when he was CMO of Swiss Re.

    http://www.isrctn.com/ISRCTN54285094

    Therefore this conflict of interest was present right from the inception of PACE yet not declared.

    Where the PACE ethics committee informed?

  • Tina Rodwell 7 August 2017, 6:22 pm

    There have been autopsies that have proven how physically devastating this illness is. So why are we still fighting the concept of “illness beliefs”?

    There must come a time where it becomes a duty of care, which turns into accountability, in a civilised society? But Ehlers Danlos syndrome (EDS, now has a test) has been lumped in with mental health, POTS, IBS and chronic pain along with ME. The overlapping symptoms of these conditions along with confusion over Lymes, makes it easy for White to reach his ultimate goal? He is already doing work with cancer patients, deciding when people with eczema are fussing about their pain? It leaves you speechless that other organisations and professionals do not see the danger? In each area the research is connecting the dots and finding the picture in the puzzle, but those in authority to change the outcome remain blind? While they then change the name, adding more confusion?

    Documents go way back that show the manipulation, you can see how hard they try to twist the social landscape around the idea of pain, turning doctors against their patients. The problem is, it is not just in the UK, taken from https://dxrevisionwatch.com/ You can see it unfold

    “The Somatoform disorders, Neurasthenia and Fatigue syndrome are being replaced for ICD-11 with a new, single “Bodily distress disorder (BDD)” category which is close to the DSM-5 “Somatic symptom disorder (SSD).” BDD poses the same threat to CFS and ME patients as DSM-5’s SSD.
    The Netherlands and Germany have witnessed the roll-out of guidelines and services for “MUS” and for “functional somatic syndromes.”
    Already in use in Denmark, in clinics and research, Per Fink seeks to colonize Europe with the “Bodily distress syndrome” diagnostic construct, which subsumes and replaces CFS, ME, IBS and FM.”

    If they manage to rearrange the name to BDD it will cause yet another opening for other illnesses to be dragged into the net of CBT? With another long period of “how is pain perceived”?

    The picture is stark, glaring even, but they are able to gloss over it? We need figures of the amount of people affected, how many die from misdiagnosis due to their approach, how we are all affected and those we loved harmed, because as one journalist said “it’s not like cancer”. It seems to me they do all they can to avoid or smoke screen those figures, but those figures are the most important thing, figures and cost? Sadly not pain, suffering, getting the right diagnosis or treatment for patients?

  • mesupport 7 August 2017, 7:15 pm

    Also placed on NICE CG53 guideline development group for industry shill ability

  • Robin 7 August 2017, 9:32 pm

    Why aren’t people with ME/CFS focusing on the metabolic abnormalities and low anaerobic threshold that can be objectively determined by a metabolic/expired air /CPET test?? The test if stopped as soon as the aerobic threshold is determined is not onerous. It clearly demonstrates the need to rest more for most patients who struggle to stay under their aerobic/anaerobic threshold???? POTS will be the next thing that they want to disclaim because as they realise that a lot of people have it they want to avoid payouts…The truth doesn’t get Prof White his big bags of money. Would fighting for objective science and objective exercise assessments move us forward???

  • Sheila Campbell 8 August 2017, 5:07 am

    Further info on breaches of Declaration of Helsinki 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

  • Jo Best 8 August 2017, 5:28 am

    He’s still on the UK Government website. It’s out of date since he retired from the post described in his biography, but I wonder if he still plays a role as a government advisor?

    Biography is from: https://www.gov.uk/government/people/peter-white

    Professor Peter White BSc, MBBS, MD, FRCP, FRCPsych, OBE

    Peter White is Professor of Psychological Medicine at Barts and the London Medical School, Queen Mary University of London. He is a consultant liaison psychiatrist at St Bartholomew’s hospital and co-leads the chronic fatigue syndrome (CFS) service there. His clinical work involves assessing and caring for patients who have both a physical and mental health problem, such as cancer and depression, as well as co-leading an assessment and treatment service for patients suffering from chronic fatigue syndrome (CFS). He qualified in medicine at St Bartholomew’s Hospital Medical College, and then trained in general medicine in Southampton, after which he received his psychiatric training at the Maudsley and St Bartholomew’s Hospitals.

  • Lolly 8 August 2017, 6:30 am

    I wonder what it would take for a licensing board to sanction a member for intentionally spreading false information. It seems that there should be a requirement for factual basis.

  • Jimbobsky 8 August 2017, 8:57 am

    I received GET by Bavinton, paid for by Aviva health insurance via my work pension benefits. Was promised I’d be back at work within 10 weeks; 23 weeks later I received a phone call from one of her team asking if I really wanted to get back to work or should the goalposts be moved? A month later my funding for GET was gone, told to get back to work myself using the ‘resources’ I’d been given. I HAD to work at least 15 hours per week to receive salary protection payments from Aviva (15 hrs set by Bavinton who felt I was capable of doing this. When I saw the NHS CFS Clinic 7 months later – in the same condition & traveled for an hour to get to them – they were shocked at how ill I was). I was ill health dismissed within 6 months of finishing GET as I just couldn’t function as required. I don’t know what was said between my employer, Aviva and Bavinton as I wasn’t party to any correspondence regarding my case, though I do have on record I was compliant with the programme at the start. I’d love to know how my symptoms and progress were presented to them.

  • Mary Hardy 8 August 2017, 9:37 pm

    “Burn out, vital exhaustion and chronic fatigue syndrome: Old wine in new bottles?” Ironically this phrase may hit the nail on the head. Whilst I am not suggesting that CFS is exactly the same as burn out and/or vital exhaustion the heart rate abnormalities seen in over trained athletes are the same as those patients are seeing in their heart rate monitoring data. ie abnormal HR drops during/after far too much exertion. So if the physiological abnormalities for over trained athletes and CFS patients are the same why are over trained athletes told to rest, rest and rest and CFS patients are told to exercise more? The root cause may be different or maybe some “over trained” athletes/burn out/vital exhaustion patients are CFS? Metabolic studies to fat/carbohydrate crossover have identified unique CFS patterns, that are easy to monitor and continuous heart rate monitoring is cheap and easy for all. Peter White co-authored a paper in 1997 in which he did VO2 max testing…..he dropped this in subsequent studies…..was this because the unique metabolic pattern that he must of seen 2 decades ago did not fit the wishes of his insurance masters?

  • Mary 8 August 2017, 9:46 pm

    Yes, I agree. The trial was of concern due to the fact that the GET aspect could harm some people. Notwithstanding, that once the trial was done it should have obtained a solid bunch of data but it didn’t. QMUL state that objective measures listed in the PACE manual were only for the therapists and not part of the research e.g. VO2 max tests, changes on heart rate….An increase in resting heart rate reflects a decrease in health as HR was measured this data should be part of the study write up. The STEP test raw data has not been released. The accelerometer was only used at the begining and not the end. So much of the data that was gathered lies buried. QMUL say that the researchers don’t have it???? Where is it?? It seems as if it is a gold mine of data on what happens when people with CFS exercise.

  • deboruth 8 August 2017, 11:05 pm

    We have to get serious. We need to send the story of White & Co’s mendacity out to all the eminent Swiss Re Insttute advisors , board of directors of Swiss Re, Swiss and European newspapers et al. Something like the snarky Spectator remarks should never go by again.without a sharp warning of libel filing, with the tribunal judge’s quote as fair warning. I’m fairly sure Bill Bradley will talk to us; he was a basketball player and New Jersey Senator. Others might if approached properly. At least all should have very official notices. It is not becoming for a company to be seen to be making money by enforcing the killing and disablement of people.

  • deboruth 8 August 2017, 11:07 pm

    Surely Peter Rowe can write something authoritative on how POTS is neither Somatic nor Psychiatric and how this is incorrect. Or perhaps he can merely come up with an apt reference.

  • David Marks 9 August 2017, 4:15 am

    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.

  • Joan Crawford 9 August 2017, 5:20 am

    Do you not have a right to seek out any reports or letters that contain info about you re the Freedom of Information Act? I guess you have to put that in writing to them. Medical record have to be kept for 70 years so they should all be on file. Might be worth seeking out a no win, no fee lawyer, if you find you have been misrepresented? Aviva clearly benefitted from JB’s advice even if it was contrary to the evidence – they chose to use her as an ‘expert’ – how convenient!

  • Barry 9 August 2017, 7:54 am

    Over the years there have been many detrimental consequences of PACE for people with ME (PwME), including insurance payout issues, NICE guidelines issues, DWP payment issues, social stigma issues, etc. By now it is clear to everyone, the PACE authors included, that PACE is mostly responsibility for this. If the PACE authors really are the ME/CFS experts they claim to be, and they if really do stand by the best interests of PwME as they claim, then surely they are far and away best placed to set the record straight on behalf of PwME. But over the years there has never been a single utterance in that regard from any of them.

  • Trish Davis 9 August 2017, 8:37 am

    Thank you David, you have made my day. Any chance of you writing getting an article published in the British Press?

  • Trish Davis 9 August 2017, 8:54 am

    Hi Lois,
    I don’t think anyone is blaming or criticising the therapists who actually treated the patients – they were trained by the PACE investigators to do a particular therapy and told it should work, so in a way, they were victims too – they had been sold a story that all they had to do was persuade the patients to try harder to exercise and to stop believing how ill they were, stop symptom focusing and be more positive etc.

    In other words, I’d say the therapists were lied to too. Not surprisingly then, they were mystified when patients like you who tried hard didn’t get better. I don’t doubt they genuinely wanted to help. The problem was, they’d been trained to do a therapy that doesn’t work and makes patients health worse if they try hard to comply.

    The people we are criticising are the principal investigators who designed the trial, wrote the training manuals and trained the therapists to carry out the therapies they had invented, and then distorted the reporting of the results.

    We also blame them for lying that they didn’t have any conflict of interest – I wonder whether anyone would have signed up for the trial if they had known that the principal investigators had a hidden agenda of trying to manipulate a trial to suit their insurance company and DWP masters.

  • Lady Shambles 9 August 2017, 10:10 am

    “It is not becoming for a company to be seen to be making money by enforcing the killing and disablement of people.”.

    YES!

  • John Leslie Whiting 9 August 2017, 10:57 am

    The amount of effort that perhaps 10 Independent Medical Examiners went into discounting and/or lying about their alleged findings refuting objective evidence of POTS in an an Australian Insurance Claims case of mine was staggering.

    I am not surprised that Debbie Smith is worried. It is not a claims epidemic but an epidemic of the truth. This is a good thing, not some catastrophe, as the title of her talk would suggest.

    I guess White didn’t anticipate POTS, and it’s not surprising that Smith’s talk is so timely.

    Smith is worried about the truth of POTS and is already preparing to slam it. This time, they won’t have Wessely et al to save them.

  • John Leslie Whiting 9 August 2017, 11:01 am

    CHIEF MEDICAL OFFICER for Swiss Re – My God !!!

  • freecell0sd 9 August 2017, 11:03 am

    “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.”

    I fear that you may be underestimating the British Establishment there. It normally seems to take thirty years for the truth to come out. I suspect that we may be in for a long and frustrating battle or carefully and slowly making progress.

  • Alicia Butcher Ehrhardt 9 August 2017, 11:27 am

    Thanks for persisting in pointing out the nonsense. My profound gratitude to the scientists and statisticians and journalists who have deconstructed something which didn’t affect me directly when it started in the UK, but has the potential of telling ALL of us worldwide to suck it up and do some exercise AS IF THAT WORKED. Insurance companies would love that. Governments would love that. It’s called ‘blame the victim.’

    I have never spoken to a person with ME/CFS who did not want to get back to work. Our standard of living, our sense of being valuable to the community, and our self-esteem all took nose dives when we got sick. I have tried, with every ounce of energy left, to get better – the PACE trial is such a huge insult.

    And in case someone thinks I have gained anything, been given anything, gotten anything I didn’t deserve, from 27+ years of being sick, I would love to switch lives with them.

  • Barry 9 August 2017, 2:41 pm

    I’m sure that when the whole truth of this finally becomes exposed to public view, there will be many highly dedicated, compassionate medical professionals who will feel deeply betrayed by the PACE trial; in many ways they will also be victims. I’m sure many of them will feel dreadful once they realise the treatments they were administering in good faith, were at best doing no good, and in many cases causing harm.

  • deboruth 9 August 2017, 4:05 pm

    Love your spirit, David Marks, but I’m frantically worried about WHO and ICD 11 With WHO now referring to 93.3 as “legacy” ailments while the cfs & somatization and all have projected listings carved out in ICD 11, I fear we are about to see the worst that SMC and the PACE gang can leave as their patrimony. Also, no matter what the truth, SMC & Wessley & White are highly effective propagandists and have 9/10 of the UK media wrapped around their fingers. Whereas in the UK none of the institutions and charities are willing to mount a PR defense and legal defenses as appropriate and fight back. I know that a British patient argued this point previously and lost. That’s why truth pours off the PACE gang like the proverbial water off a duck. NICE and WHO and the great mass of GPs barely register a peep of the truth because the PACE PR roar is so much louder.