An Open Letter to Dr. Simon Wessely, Defender of the PACE Study

Dear Dr. Wessely:

I was surprised to see the president of the Royal College of Psychiatrists post a comment on a U.S. law blog.  I suppose this means that I have gotten your attention in the discussion of Chronic Fatigue Syndrome (ME/CFS), and that you feel compelled to respond to criticism of the PACE Study.  That is a good thing.

Regrettably, your comment was petty and defensive, without engaging the actual issues relevant to PACE’s misleading conclusions.  I will not revisit the study’s many scientific and methodological flaws, which have been well addressed by Dr. Keith Geraghty (here) and by Dr. David Tuller in his Virology Blog investigation (here). As you know, dozens of top scientists and clinicians have condemned the study in an open letter to The Lancet, stating that its flaws “have no place in published research.”

Instead, I want to address your rhetoric, which is unworthy of a serious scholar.

You begin by accusing me of not obtaining the “full facts of the dispute before rushing to judgment” – as though the facts are obscure or difficult to locate, when they have actually been discussed at length on numerous platforms. Moreover, my post linked to Dr. Geraghty’s well-documented article, which explains some of PACE’s errors in detail. Your comment relies on innuendo to suggest that there is information I did not consider, when you have no way of knowing what information I did or did not review. (For the record, I have read everything you mention, and much more.)

Even so, you do not point out a single inaccuracy in the Geraghty article. Nor do you specify any other facts that need to be considered.

Tellingly, you do not refute the two problems I specifically identified in my post:  The PACE researchers’ preexisting interest (similar to your own) in arriving at a predetermined outcome, and their resistance to sharing data until compelled by a judicial order.

Regarding conflicts of interest, you argue that “it’s an old trial with consent forms from 2003.” That might be, but the PACE authors promised in their protocol to abide by the Declaration of Helsinki (obviously in effect in 2003) which requires investigators to disclose “any possible conflicts of interest” in obtaining informed consent. the PACE authors failed to tell prospective participants about their close relationships to disability insurers with a clear interest in the results of the study.

Regarding data transparency, you refer to “previous legal rulings” and say that the recent disclosure order is “still contested.”  That is untrue.  The latest order was issued by the relevant FOIA tribunal, which rejected the PACE team’s stated reasons for refusing to disclose their data, and which supersedes any earlier decisions. Queen Mary University of London wisely chose not to appeal, accepted the tribunal ruling, and turned over the requested material. As a legal matter, the issue is settled.

But in any case, so what?  The data are the data – completely apart from the merits of the disclosure ruling – and they clearly show that the PACE results were wildly overstated. It is understandable that the researchers wanted to keep this information from the public, as they managed to do for five years. But that is why there are laws and courts to adjudicate these matters.

This is all of a piece, however, with your reputation for disparaging those who disagree with you.  You have referred to PACE critics as “anti-science,” when in fact they have sought nothing more than scientific accountability for the study’s lapses and increased biomedical research into ME/CFS (as  endorsed by last year’s major reports from the U.S. Institute of Medicine and the National Institutes of Health). You ignore the work of prominent U.S. scientists, in laboratories at Columbia and Stanford Universities, who have made progress identifying potential biomarkers for ME/CFS, which undermines your theory that the illness arises from “false beliefs.” Do you believe that Professors Ronald Davis, Ian Lipkin, Mady Hornig, Vincent Racaniello, Ellen Clayton, and Bruce Levin are anti-science, despite their appointments at prestigious U.S. universities?

You have claimed that “activist” ME/CFS patients pose a serious threat to you, famously saying that you felt “safer” in Afghanistan than studying ME/CFS, and insisting “that is not a joke.” You stood by when the press reported that patients were “considered to be as dangerous and uncompromising as animal rights extremists,” which is flatly untrue. You helped spread stories about a “campaign of intimidation” against you and the PACE authors, which were tremendously exaggerated, to say the least. 

For years, these claims of harassment were invoked to resist disclosure of the underlying PACE data, until the tribunal ruled that the evidence simply didn’t support the claims. The FOIA tribunal found that the purported campaign of intimidation boiled down to one instance of heckling at a seminar, and referred to the researchers’ “apocalyptic” argument as “grossly exaggerated” and a “vast logical leap.”

Finally, you point to your own blog post, which ironically undermines your very point.  You compare the PACE Trial to an ocean liner plotting a course from Southampton to New York, and express satisfaction that it made the trip “successfully across the Atlantic,” despite course corrections along the way.  But surely you realize that a randomized controlled study is not supposed to have a fixed destination, but rather should follow wherever the evidence – or the current, to maintain the metaphor -- leads.  You thus virtually admit that the PACE Trial was always intended to reach a particular result, and that adjustments along the way were necessary to get it there.  Just so.

If you are still reading, I hope that you will consider answering the following questions:  You claim that ME/CFS arises from “unhelpful illness beliefs,” but how can that theory be falsified?  What would it take to convince you that you are wrong?  Unless you can satisfactorily answer these questions, I fear that you fall into Thomas Kuhn’s category of those who are unwilling to give up their paradigm in the face of new information.

ME/CFS research deserves serious attention from scientists and physicians, which is finally happening in the United States and elsewhere.  Patients deserve respect. Your insistence on defending the indefensible PACE trial, and your patronizing jabs at critics, disserve everyone, including yourself.

Sincerely,

Steven Lubet

Comments

[Trish Davis]

Behan, W.M.H., More, I.A.R. & Behan, P.O. Acta Neuropathol (1991) 83: 61. doi:10.1007/BF00

Summary
We have examined the muscle biopsies of 50 patients who had postviral fatigue syndrome (PFS) for from 1 to 17 years. We found mild to severe atrophy of type II fibres in 39 biopsies, with a mild to moderate excess of lipid. On ultrastructural examination, 35 of these specimens showed branching and fusion of mitochondrial cristae. Mitochondrial degeneration was obvious in 40 of the biopsies with swelling, vacuolation, myelin figures and secondary lysosomes. These abnormalities were in obvious contrast to control biopsies, where even mild changes were rarely detected. The findings described here provide the first evidence that PFS may be due to a mitochondrial disorder precipitated by a virus infection.
NOTE: This paper was published in 1991. Simon Wessley must have seen it since he decided around that time to be an ME 'expert'. It demolishes the biopsychosocial theory. I rest my case.

[Nasim Marie Jafry]

Re. Trish Davis comment, I was actually diagnosed with ME by Behan in early 1984 (please see my previous comment) - I was very ill with Coxsackie virus in late 1982 and continued to become more and more ill - I eventually had EMG and muscle biopsy to confirm the diagnosis of ME. It still stuns me that Wessely has tried to rewrite the narrative of classic ME - an illness he is spectacularly ignorant about. And his oftquoted ' we have to agree to disagree' wholly demonstrates his lack of awareness of the harm his views have caused, as if there has been no consequence whatsoever from his own beliefs.

[Dr Paul]

There's an anecdote afoot in Britain that when someone with ME asked a Wesselyan or someone influenced by the Wesselyans why her condition had not improved via their prescribed treatments, she was told that it was because she didn't want to get better.

Now, I do not know whether this story is true or false or one of those 'ben trovato' tales that are essentially true even if they didn't actually happen, but nothing would surprise me if it was true.