Trial By Error: Crowdfunding, Week 2; and more Sharpe and Chalder

By David Tuller, DrPH

As of this post, I have achieved 57% of my goal, with 542 donations and 15 days left to go. I think that’s pretty good! I’m optimistic about getting reasonably close to the amount I’m trying to raise. Folks at Berkeley certainly notice the success of my crowdfunding. It is an unusual way for academics to support their positions, but from the university’s perspective I’m doing what academics are supposed to do—bring in money.

The UK continues to dominate, with 206 donations, followed by the US with 107, Norway with 64, Australia with 40, Sweden with 26 and Canada with 22. Six people donated from New Zealand, where I’m planning to go later this year. Last year I received around 1000 donations, so there still seems room to grow!

Here’s the link: https://crowdfund.berkeley.edu/project/14941

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Oxford psychiatrist Michael Sharpe doesn’t seem to be able to stop himself from sending silly letters to publishers about something they have published that he doesn’t like. Earlier this year, I reported on his efforts to have two excellent stories retracted–one each by my friends and colleagues Julie Rehmeyer and Steven Lubet. (Disclosure: I have co-written articles with both of them.) Professor Sharpe’s letters were somewhat incoherent. They included untrue accusations and represented—to me—his inability to break free from the vicious cycle of self-serving argumentation in which he appears to have been trapped for decades. Sad.

Earlier this month, Annals of Internal Medicine published an editorial by Peter Rowe, a pediatrician at Johns Hopkins, about the null findings from the Norwegian rituximab study. In this editorial, Professor Rowe had the temerity to cite last year’s PACE reanalysis (Wilshire et al, of which I was a co-author) and suggest that the investigators’ own reported findings in The Lancet and elsewhere had essentially been debunked.

Professor Sharpe, of course, was not one to let this pass. In his published response, he accused Professor Rowe of drawing “a nihilistic conclusion about treatment options” and wrote this:

Dr Rowe…dismisses the findings of this trial [PACE], referencing a critique published in the journal BMC Psychology and implying that this had nullified the trial findings. This is not the case. This critique, the authors of which included campaigners against any psychologically informed approach to the treatment of ME or CFS, has been rebutted by the PACE authors. Furthermore the main PACE trial of a useful benefit from CBT and GET have been repeatedly replicated.

Finally, it is surely unfair to patients to casually dismiss the evidence for an approach that could help them, simply because campaigners reject any treatment that could be seen as “psychological.” Surely, the people who suffer from this condition deserve accurate information about, and access to, all treatments for which there is good evidence of efficacy, whether these treatments are psychologically informed, or not.

As usual, this is nonsense. There is nothing “nihilistic” about pointing out the truth–the CBT/GET paradigm has been effectively discredited, whether Professor Sharpe chooses to acknowledge that or not. He dismisses the Wilshire reanalysis on the grounds that the group of authors “included campaigners against any psychologically informed approach to the treatment of ME or CFS.” But it is false to claim that those opposing PACE and the CBT/GET paradigm are motivated mainly by antipathy to psychologically informed approaches to anything. They are motivated by antipathy to bad science, of which PACE is a shining example.

Professor Sharpe further notes that he and his colleagues have “rebutted” Wilshire et al. Poor, deluded Professor Sharpe. He believes that just because he and his colleagues construct some sentences and publish them in a professional venue, it constitutes an effective “rebuttal.” He is mistaken. The “rebuttal” to Wilshire et al, like every rebuttal ever issued by the PACE authors, cannot be taken seriously. It is a mish-mash of their previous inadequate and unconvincing arguments. It will not quell the momentum of this ongoing paradigm shift in how ME/CFS is viewed, researched and treated.

In a telling moment in Sharpe’s response to Rowe, he cites the recent article written by Kate Kelland, a Reuters science reporter as well as the provider of glowing testimonials for the Science Media Centre’s public relations efforts. Let’s parse this. Professor Sharpe tells Kelland that “campaigners” reject any research that suggests the illness might have a psychological component. Then he references the resulting propaganda piece as evidence that “campaigners” reject any research that suggests the illness might have a psychological component.

This is the kind of rhetorical juju that the CBT/GET ideological brigades have successfully deployed in maintaining their hegemony all these years. Now that the peer-reviewed literature includes robust refutation of the bogus claims from PACE, these arguments don’t seem to work for them as well anymore.

I look forward to Rowe’s response.

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Professor Trudie Chalder has also been keeping herself busy. With several co-authors, she is out with yet another paper promoting the value of her much-loved CBT—this time for patients suffering from irritable bowel syndrome. This study shares PACE’s fundamental problem—it’s an open label trial relying on subjective outcomes. The findings will therefore be infused with an unknown amount of bias. So, you know, trust the results at your own risk. Do these people never tire of foisting this stuff on the public?

There’s been some discussion of the study on this thread on the Science For ME forum.

News coverage of the study was predictably unskeptical, with headlines to match. “Answer to irritable bowel syndrome is in the mind,” declared The Daily Telegraph on its front page. According to the headline in The Daily Mail, “Talking therapy could cure IBS better than drugs, study reveals…” The Guardian article included the following paragraphs:

“While the team said they are still investigating quite why CBT helps, they noted the therapy was tailored specifically to IBS and, among its features, offered participants information on how the bowel works, practical advice on eating and exercise, and ways to manage stress, sleep and emotions. 

It also included ways to break patterns of unhelpful behaviours and thoughts, such as people with diarrhoea immediately dashing to the toilet if they felt the urge, or people waking up with stomach problems and therefore assuming the day would be difficult.”

Hm. This “therapy” seems to be trying to do lots of different things at once. I’m not sure how the investigators could possibly tease out which factor would account for whatever improvements they’ve observed. Practical advice on eating or stress reduction training could conceivably help patients cope with IBS and boost their self-reported outcomes while having little to do with the provision of CBT. Moreover, if The Guardian is right and the investigators were telling people who were about to have an explosive expulsion event that they should avoid rushing to the toilet…well, let’s just say I’m glad no one taking part in this study was living in my house.

IBS is, of course, one of those conditions that falls into the catch-all-category of “medically unexplained symptoms.” That’s the category that includes everything that Chalder, Sharpe, Wessely and their acolytes cannot explain physiologically. And if Chalder, Sharpe, Wessely and their acolytes cannot explain something physiologically, it must be amenable to psychological and behavioral interventions.

This is, more or less, the simplistic framework for the metastasizing National Health Service program called Improving Access to Psychological Therapies, or IAPT. I have written about this program before and will do so again. “Chronic fatigue syndrome” has regularly been lumped among the conditions falling within the MUS grouping, which are targeted for treatment through IAPT. The PACE trial has thus served as something of a template or “proof-of-concept” for this effort to ramp up delivery of these kinds of psychologically oriented services.

Citing PACE has become a bit more problematic recently, since the literature now includes a convincing, peer-reviewed refutation of all the main PACE findings. The CBT/GET ideological brigades are undoubtedly eager to replicate that initial success and promote varieties of these therapies for other illnesses, like IBS, that they believe are characterized by cognitions that need changing.

Sure enough, a press release about the study includes an interesting quote from Professor Chalder’s colleague and collaborator on the study, Professor Rona Moss-Morris. Here’s what she had to say:

“The most important next step is for these tailored CBT treatments to be made more widely available. Professor Trudie Chalder and I are currently training NHS therapists at pre-existing Improving Access to Psychological Therapy (IAPT) services, so that more people suffering from IBS can access these treatments quickly. We are also working with a commercial partner to bring web-based CBT to the NHS and other parts of the world.”

Wow, that didn’t take long. Bet those “other parts of the world” can’t wait!

{ 9 comments… add one }
  • Anne 15 April 2019, 12:31 pm

    “referencing a critique published in the journal BMC Psychology and implying that this had nullified the trial findings.”
    Using the word “critique” to qualify a reanalysis of the PACE data according to its original protocole is somewhat telling. Yes Michael, as you’ve often said yourself, “the trial speaks for itself”.

  • Sandra 15 April 2019, 1:31 pm

    These people are seriously delusional: out to cure the world with one CBT technique at a time. What they really need to do is to develop a CBT technique with which they can cure themselves of their CBT delusions. Now that is something CBT was really meant for.

  • Alicia Butcher Ehrhardt 15 April 2019, 1:42 pm

    Telling people that IBS is all in their minds is fundamentally cruel. I hope the IBS community will stomp on their tormentors effectively and immediately, as I cannot imagine anyone thinking IBS is psychological in the slightest. And it is extremely debilitating.

    Shame on Sharpe and co. Again.

  • jimells 15 April 2019, 2:11 pm

    Perhaps someone could tell Professor Chalder about the internet, where she could learn what other researchers are writing regarding an illness she obviously knows nothing about.

    Mast Cell May Be the Master Key to Solve the Mystery of Pathogenesis of Irritable Bowel Syndrome
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4849681/

  • Steve Hawkins 15 April 2019, 9:46 pm

    Interesting that Southampton Uni publishes patient testimonials in its own press releases, in exactly the same way other, less prestigious, website purveyors of woo do, in the time-honoured manner of quacks the World over for ever!

    I can see that another ‘next most important step’ is going to be the discovery that one doesn’t actually need the phone lines or Internet for the process to be effective either: it will prove to be only necessary that patient and therapist agree to think about their respective CBT roles at the same appointed time. Quantum Cognitive Entanglement will take care of the rest. And then Amplification by Quantum Cognitive Resonance Entanglement will be found to enable the simultaneous wireless treatment of an infinite number patients by each King’s approved CBT disciple.

    One day, we might all get to be Ascended Ones… Or is that Stargate?

  • Susan 15 April 2019, 10:42 pm

    “We are also working with a commercial partner to bring web-based CBT to the NHS and other parts of the world.”

    A career-building, $, and ego-building exercise for the docs. The mentality behind these maneuvers is sub-normal and the researchers’ honesty is nil.

    Most folks with “mus” or rather, illnesses with causes that are unknown at the present time (ICUPT [sic}) learn how to cope and manage very well, thank you. Though they may the mistake of COMPLAINING while talking to a ‘doctor.’
    The little phrase: I want to help you, but we just don’t know enough about your syndrome. Why is that so hard to tell a patient when it’s the truth? Why lie and give false hope by referring people to psych (unless they truly are in need and ask for that type of help)?

    Where did these psychiatrists leave their brain cells and their moral compass, not to mention their ersatz compassion.

    disabled RN wants to know

  • Couch Turnip 16 April 2019, 5:39 am

    This MUS cult is so dangerous. It’s flavour of the decade because, apart from being a whacky belief system, it is also an economic management model that has been built on the management model for ME/CFS. The BPS cabal have succeeded in depriving ME/CFS patients of care, proper investigation, research and the chance of effective treatment for far too long, and now they’re extending the same model to everyone else, and especially to those who have unexplained symptoms. (That’s just about everyone who goes to a GP before they get diagnosed.) What better way is there for governments, health services and insurance companies to save money than to tell people that their symptoms are due to psychological problems and deny them biomedical care on that basis from the outset?
    The risks should be obvious (well you’d think). IBS differential diagnosis includes – inflammatory bowel disease (IBD), endometriosis, GI tract cancer, ischaemic colitis, giardiasis, coeliac disease. On the basis of a rushed 8 minute consult GPs are to send their patients off for telephone CBT / IAPT instead of referring them to secondary care. The UK already has a poor track record of diagnosing cancers at an early stage, with patients often having to go back to their GPs many times before the correct action is taken, so an additional delay for CBT could well be catastrophic. And IBD is often misdiagnosed as IBS. Speaking from recent experience, if GI consultants are incapable of diagnosing IBD from a patient’s history then what are the chances that GPs will get it right? This is shoddy science leading to dangerous medicine, and unfortunately this model is taking off across the globe.
    What started out as a sadistic vendetta against ME/CFS patients has turned into an economic policy with global reach. This has been in the planning for a long time. It is not an underestimate to say that millions are now at risk.
    Nevermind “where did these psychiatrists leave their brain cells and their moral compass?” We should all know not to trust a psychiatrist. But where did ‘biomedical’ doctors and GPs leave their brain cells and their moral compass? That’s what I want to know.

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