By David Tuller, DrPH
Something’s weird over at BMJ Best Practice, a resource for clinical decision-making and an arm of the BMJ Publishing Group. Two days ago, Steven Lubet and I posted a blog praising the new guide written by Dr. James Baraniuk and apparently reviewed by Peter White, along with two other experts.
First, I want to acknowledge that many patients disagreed with us about the merits of the guide. We assessed this document based on how much better it was than previous terrible U.K. guidelines, like those from NICE–not based on how far it was from perfection. It was our understanding as well that this document would continue to be reviewed and revised, presumably for the better.
Are there passages that still read like verbiage from an earlier biopsychosocial-oriented version and would best be edited out? Yes, definitely. Should we have cited these and therefore been more equivocal in our comments? Perhaps. But the bottom line for me remains this: The guide contains very clear statements that CBT and GET are not indicated for patients with PEM and other core symptoms of ME, and it presents the illness as a serious physiological disease and not a psychological disorder. And thatâ€™s a big, big step forward, whatever the shortcomings. (Given the history, I recognize that my perspective on the matter might be too optimistic. I hope not.)
As we noted in an update yesterday, the document we reviewed was dated July 31, 2017. Shortly after the blog was posted, we learned that a more recently updated version of the guide, dated November 13th, did not include Professor Whiteâ€™s name as a reviewer. We have so far been unable to find out why or when that happened. Now that he is retired, his former e-mail address from Queen Mary University of London is no longer operative, so reaching him directly is a challenge.
Moreover, thanks to sharp-eyed patients, some other anomalies were soon revealed. Besides the removal of Professor Whiteâ€™s name as a reviewer, the new version of the guide has at least one other major change. In a section at the end on â€œEvidence Scoresâ€ (p. 58 in the July version of the guide and p. 63 in the November version), the following sentence has been deleted from the later edition:
â€œGraded exercise therapy and overall improvement: there is poor-quality evidence that graded exercise therapy results in greater overall improvement in symptoms and functioning.
Evidence level C: Poor quality observational (cohort) studies or methodologically flawed randomized controlled trials (RCTs) of <200 participants.â€
No additional text was included to replace this assessment of the effect of GET on overall improvement. Since the new version is several pages longer than the July version, I assume other sections have also been changed, but I have not had time to compare the documents at length. Unfortunately, given the track record of the U.K. medical publishing establishment, I assume other changes might also have served to water down the evidence against CBT and GET.
Finally, I was also sent a three-page BMJ Best Practice patient leaflet purportedly drawn from the larger guide. This leaflet is dated November 13th, like the later version of the guide. Unlike the guide itself, the leaflet appears to portray chronic fatigue syndrome as a condition largely characterized by extended â€œtiredness.â€
The leaflet only mentions in passing any possible physiological underpinnings. It does not discuss the lack of legitimate evidence supporting cognitive behavior therapy and graded exercise for patients with the core symptoms of ME, or that the latter especially is contra-indicated because of the symptom of post-exertional malaise. It says nothing about the enormous problems created by use of the Oxford criteria and other loose case definitions. Like the PACE trial itself, it is a piece of crap.
So BMJ Best Practice, whatâ€™s going on here?