Trial By Error: The Dutch Review; My Trip; Bristol’s Silence

By David Tuller, DrPH

And now some potentially good news from the Netherlands.

Two years ago, the Dutch parliament asked the Health Council—an independent scientific advisory body—to review the state of evidence related to the illness generally called chronic fatigue syndrome in the Netherlands. That review was to include the evidence for rehabilitative treatments like cognitive behavior therapy and graded exercise therapy. The Netherlands, of course, has its own chapter of the CBT/GET ideological brigades. These researchers, like their close colleagues the PACE authors, have published methodologically problematic studies that have appeared to affirm the efficacy of CBT and GET.

I have seen a copy of the committee’s draft report (in Dutch), which was distributed to stakeholders in November for comment. The final report based on that draft is scheduled to be released next week. Despite concerns expressed at the beginning of the process that the biopsychosocial forces might dominate the proceedings, the draft report significantly downgraded the current recommendations for rehabilitative therapies, so here’s hoping few or no changes were made in the final version.

The draft stated flatly that, based on the evidence, “the committee sees no reason” for GET to be used in the Netherlands. As for CBT, the draft noted that “a small majority” of committee members believed it could be helpful for some patients. But those in this group also acknowledged that patients also reported having been harmed by the approach, and they suggested that the treatment should be pursued with care. The other committee members objected to any use of the kind of CBT designed for ME/CFS, in part given the therapy’s reliance on the theory of misguided illness beliefs. In any event, this split decision was hardly a full-throated endorsement of CBT.

At least one committee member representing the interests of the CBT/GET cult, psychologist Hans Knoop, was apparently unhappy with this draft report. He was said to be preparing a minority report to counter the findings endorsed by his colleagues on the committee. I am not sure if that remains the plan.

Given the very, very close relationships between the Dutch and British biopsychosocial cabals, such a shift, assuming it is borne out in the final report, would be a major development. It would certainly impact the current NICE deliberations and reinforce a point I hope to make during my trip to Australia–that the CBT/GET paradigm is quickly losing its international legitimacy.

It is worth noting that Hans Knoop co-authored a deceptive commentary for The Lancet about the PACE trial report. This commentary declared that participants in the CBT and GET groups had met a “strict criterion” for recovery—a declaration that was transparently false on two fronts. First, the stated “criterion” was anything but strict, as the Dutch co-authors should have known from their own previous research. Second, the Lancet paper specifically avoided addressing “recovery.” Despite these issues, the PACE authors themselves vetted the language in the commentary before publication.

In other words, Professors White, Sharpe and Chalder collaborated with their Dutch colleagues in a way that ensured the word “recovery” was linked to CBT and GET in that issue of The Lancet–even though the 2011 PACE paper itself made no mention of “recovery.” (The “recovery” findings were included in the 2013 paper in Psychological Medicine.) The media adopted the language of the commentary, so the unsupported claim that PACE led to “recovery” made headlines worldwide.

I look forward to seeing the final version of the Dutch report–hopefully next week.

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I am leaving for Australia tonight. I will arrive in Melbourne, my first stop, on Wednesday. It’s a long trip, plus a big jump forward in time—18 hours! My first event is a gathering with the local ME group this Friday. On Sunday, I’m participating in a panel discussion after a screening of Unrest. Next Tuesday, March 20th, I’ll head to Canberra, the capital, and then to Sydney the following week and elsewhere beyond that. I’ll be posting as I can.

As members of the Commonwealth, Australians have adopted some of the U.K.’s perplexing customs. There’s the queen stuff, of course. They also drive on the other side of the road. And they promote rehabilitative treatments like CBT and GET as the de facto standard of care for ME/CFS (although they mostly call it chronic fatigue syndrome, it seems). That’s one of the issues I’ll be looking at during my trip.

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Is it just me, or is there something odd about Bristol University’s silence since the CFS/ME Research Collaborative announced it would be bidding farewell to Professor Esther Crawley? Last week’s CMRC statement indicated that she was leaving the executive board so she could focus on her “new role” at Bristol. The statement did not mention what that new role entailed.

The changes at CMRC were presumably in the works for at least a short while. It should have been easy to predict that the disclosure of Professor Crawley’s departure would spark immediate questions about whether she was leaving voluntarily or was being pushed out, and about the nature of her purported new role at Bristol. So why didn’t the university prepare an appropriately gracious and face-saving announcement in advance, thanking Professor Crawley for taking on this or that added responsibility and giving her a pretty new title?

By staying mum, Bristol has chosen—intentionally or not–to let the questions percolate. I could find nothing about Professor Crawley’s new role on Bristol’s website or on her own faculty page. Last Wednesday, I wrote to Sue Paterson, Bristol’s director of legal services, for information about Professor Crawley’s new role. Ms. Paterson has not yet responded. Hm.

Of course, a statement from Bristol at this point might just appear to have been produced under pressure. In any event, I guess we’ll find out when we find out.