By David Tuller, DrPH
So itâ€™s time again to review my work and figure out what Iâ€™ve been doing. My crowdfunding from last April has been covering my half-time position at Berkeley since July 1, so December 31 marks the end of the first six months. The Berkeley fiscal year ends June 30th, so I will need to decide soon if I am going to crowdfund again this spring and continue this project for another year.
I posted 42 times from July 1st through December 31st. A third of these posts–14, if I counted correctly–involved the terrible pediatric studies coming out of the University of Bristol. The lead investigator of the Bristol group, of course, is the former vice chair of the CFS/ME Research Collaborative. Many members of the CMRC now appear to have recognized that the Bristol work is sub-par and does not warrant much consideration.
Many of these 14 posts concerned either the Lightning Process study or the school absence study, both of which are rife with methodological and ethical missteps and need to be retracted. I also reported how Bristol was advertising its FITNET-NHS trial by essentially promising that two-thirds of those who got the treatment would recoverâ€”a great way to bias the results. And I exposed how the Bristol team decided to cite the same research ethics committee letter to exempt at least 11 studies from ethical reviewâ€”some of them clearly under false pretenses. Five of those studies were published in BMJ journals, yet BMJ has stonewalled rather than taking any corrective action.
Many of these posts were open letters to people who should know better. The most frequent recipient was Dr Fiona Godlee, the editorial director of BMJ, to whom I sent four of these missives. So far, for reasons I fail to understand, Dr Godlee has been either unwilling or unable to fulfill her obvious professional responsibilities in this matter. Rather, her journals seem to be doing everything they can to avoid cleaning up their messesâ€”including accusing me of misreporting the facts. One of my open letters to Dr Godlee was a request for an apology from BMJ for this false claim from the journal BMJ Open, which published the school absence study.
Other topics also warranted multiple posts. These included the Cochrane situation, the Mayo Clinicâ€™s continued reliance on stupid and unscientific recommendations, and the disturbing invitation to Professor Per Fink to speak at a conference on psychosomatic medicine at Columbia. The Cochrane posts included a statement in support of the decision to temporarily withdraw the deeply flawed exercise review. That letter was signed by more than 40 scientists and experts from many leading academic centers.
In addition, Virology Blogâ€™s new open letter to The Lancet garnered even more signatures– from 114 experts, ten members of Parliament, and several dozen patient and advocacy organizations from around the world. I posted this letter first in June, and then reposted it twice moreâ€”in July and Augustâ€”with more signers for each iteration. The August version received news coverage in The Times (UK), followed the next day by a story on BMJâ€™s site.
In response, the head of the UK Medical Research Council, Dr Fiona Watt, issued a laughable statement in defense of PACE. Not surprisingly, she cited the Cochrane reviews to back her claim. Of course, Cochrane subsequently made clear that it believes the exercise review needs to be withdrawn and revisedâ€”even though it has not yet managed to make this happen. So Dr Watt really needs to come up with a better defense of PACE if she hopes to keep justifying her agencyâ€™s seriously flawed perspective.
I wrote only one blog on the situation with NICE and one on the UKâ€™s problematic Improving Access to Psychological Therapies program. I had intended to devote more time to both these issues during this time period but did not manage to do so; other events kept intervening. I hope to do better on these topics in the next six months, given their importance.
In non-Virology Blog efforts, I co-wrote a piece about disability insurance issues for STAT, the well-regarded health reporting site, with my friend and colleague Steve Lubet, a law professor at Northwestern University. And for BerkeleyWellness.com I conducted a Q-and-A with journalist Maya Dusenbury about her book on medical discrimination against women–Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. The Dusenbery interview included some discussion of a key issueâ€”so-called â€œmedically unexplained symptoms.â€
I continued my traveling and public outreach efforts. I spent time in the Netherlands and the UK in September and October, and five days in Norway in November. I was interviewed at length in both Amsterdam and Oslo. During my time in England, I attended the annual gathering of the CFS/ME Research Collaborative for the first time, pleased to note that it seemed to me to be a BPS-free zone this year. Although I wasnâ€™t officially on the schedule, I was asked to say something at the end of the first dayâ€”so I gave a little rant along predictable lines.
In Newry, Northern Ireland, I was delighted to share the podium with Professor Brian Hughes, a psychologist at National University of Ireland Galway. My presentation wasnâ€™t that different from usual, but I did happen to compare the peer-reviewing and self-congratulatory behavior of the PACE authors and their colleagues to a â€œcircle jerkâ€â€”an American summer-camp expression that speaks for itself. (The only problem is that itâ€™s a guy term, so Iâ€™m not sure it would be understood to include the many women among the GET/CBT ideological brigades.)
I also gave two talks in Sheffield, England, two in Norway and one in Boston. I think I might need to vary my act soon! Everyoneâ€™s heard it already. It might be time to develop a new talk focused on non-PACE aspects of the situation, although ripping up PACE provides me with great pleasureâ€”even when the shredding is just metaphorical.
As always, I didn’t get to lots of things I hoped to cover. I always feel like Iâ€™m way, way behind. I still have a couple of interviews from Australia I haven’t written up, plus interviews with two patients from the Royal Free outbreak. When I started this project, there was much less news! With so much going on now in so many different countries, it seems to be more and more difficult for me to keep up with it all–much less comment on everything.