James Coyne wrote to me a couple weeks ago:
This time I’m critiquing a horrible mediational analysis. The larger context is that the authors have refused all requests to share data that would be needed to make an independent evaluation of their interpretation. I am now in what will be a highly visible confrontation with them because I’ve asked for related data that they published in PLOS One. PLOS One has strict data sharing policies and we are awaiting a Thursday midnight deadline for a response from their university.
He sent me a copy of the paper (Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial, by Trudie Chalder, Kimberley Goldsmith, Peter White, Michael Sharpe, and Andrew Pickles) that he’d criticized. I glanced at the paper and his comments and wrote back to him:
Maybe it’s worth just ignoring this stuff. There’s so much bad research out there! Or is the topic itself important, and you’re concerned that the bad research will have a malign effect on policy?
Before going on, that you should not consider my above statement as a diss of the Chalder et al. paper, nor, for that matter, should you consider this disclaimer as a statement of support. I looked at the paper only very quickly, and I have a skepticism of pretty much any of these mediation models (as illustrated, for example, by figure 7 from Chalder et al.), so I responded to Coyne with a generic statement that sometimes it’s better just to ignore bad research.
I agree it’s an absolute disaster of a paper. It otherwise should not be the object of my attention but there is some nastiness associated with its dissemination. Peter White, one of the authors is paid for working with a group trying to get social welfare payments denied to people with chronic physical illness. He promotes the idea that chronic fatigue syndrome, whatever its origins, is perpetuated by fears of exertion. The deconditioning model that is the basis for these claims has been discredited. So he is forced to rely on dodgy research like this to promote the view that chronic fatigue syndrome is largely “cognitive” and psychosomatic. I’ve seen horrible testimony from him that patients who “appear” to be disabled should be denied handicap parking passes because that will force them to walk more. He has personally testified in a number of hearings where patients with chronic fatigue syndrome have had the benefits revoked.
The Institute of Medicine has recently released an extensive report that takes issue with conceptualization of chronic fatigue syndrome as psychosomatic. It explores a number of physiological bases for what is a very heterogeneous group of conditions. Most importantly, while the report indicates that fatigue is a common symptom, the disabilities are much more extensive and subjective fatigue is not a suitable primary outcome for evaluating interventions.
Here is my [Coyne’s] blogging about a more recent paper from this group.
And then more:
We have come under pressure from a number of sources, including Richard Horton, editor of the Lancet [the journal where the Chalder et al. paper appeared]. Comments on my blog posts were temporarily closed at PLOS’s’ Mind the Brain last Monday. Although I am still blogging there, I have moved my advocacy for releasing the the data from a cost analysis of the PACE trial published in PLOS One to my own blog, Quick Thoughts. This was done to decrease the pressure on PLOS and to ensure there was no appearance of a conflict of interest in my using their blog site. I am not involved in the decision-making at the journal concerning the release of the data and anyone can make a similar request.
But now, Retraction Watch, Dorothy Bishop, and even Richard Smith, former editor of BMJ, have joined me in calling for the release of the PLOS data. PLOS is in contact with lawyers.
Although there is a remarkable lack of transparency and basic data being presented, enough issues can be raised about claims the PACE investigators have made in their articles and to the press. An independent look at the data is needed.
So, this is emerging as a major, maybe historic confrontation between the forces pushing for sharing of data and the British establishment. I think I am going to get the data, but the task remains of degrading this ridiculous mediational analysis paper which is used to deny benefits to patients with chronic fatigue syndrome. One of the authors, Peter White, was testifying before a British government toward to get the handicap parking passes of persons with chronic fatigue, before the data were even analyze. Furthermore, primary outcomes were changed after patients started new crew. It’s an incredible mess.
I haven’t looked into any of this in detail but I’m posting the story here because it illustrates the connections between disputed research claims and policy. Never-back-down, never-admit-error attitudes can have consequences.