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 thatâ€™s pretty good! Iâ€™m optimistic about getting reasonably close to the amount Iâ€™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 universityâ€™s perspective Iâ€™m doing what academics are supposed to doâ€”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
Oxford psychiatrist Michael Sharpe doesnâ€™t seem to be able to stop himself from sending silly letters to publishers about something they have published that he doesnâ€™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 Sharpeâ€™s letters were somewhat incoherent. They included untrue accusations and representedâ€”to meâ€”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 yearâ€™s PACE reanalysis (Wilshire et al, of which I was a co-author) and suggest that the investigatorsâ€™ 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 optionsâ€ and wrote this:
“Dr Roweâ€¦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 â€œpsychological.â€ 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 â€œincluded campaigners against any psychologically informed approach to the treatment of ME or CFS.â€ 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 â€œrebuttedâ€ 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 â€œrebuttal.â€ He is mistaken. The â€œrebuttalâ€ 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 Sharpeâ€™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. Letâ€™s parse this. Professor Sharpe tells Kelland that â€œcampaignersâ€ reject any research that suggests the illness might have a psychological component. Then he references the resulting propaganda piece as evidence that â€œcampaignersâ€ 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 Roweâ€™s response.
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 CBTâ€”this time for patients suffering from irritable bowel syndrome. This study shares PACEâ€™s fundamental problemâ€”itâ€™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?
Thereâ€™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. â€œAnswer to irritable bowel syndrome is in the mind,â€ declared The Daily Telegraph on its front page. According to the headline in The Daily Mail, â€œTalking therapy could cure IBS better than drugs, study revealsâ€¦â€ 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.Â
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 â€œtherapyâ€ seems to be trying to do lots of different things at once. Iâ€™m not sure how the investigators could possibly tease out which factor would account for whatever improvements theyâ€™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 toiletâ€¦well, letâ€™s just say Iâ€™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 â€œmedically unexplained symptoms.â€ Thatâ€™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. â€œChronic fatigue syndromeâ€ 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 â€œproof-of-conceptâ€ 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 didnâ€™t take long. Bet those â€œother parts of the worldâ€ canâ€™t wait!