By David Tuller, DrPH
*I have corrected the paragraph involving tweets to Sir Simon Wessely. See note at end of post.
A major news organization is preparing to publish what seems to be a piece about me and my work. The piece also seems to be focusing on the narrative that dangerous and irrational patients are running rampant and threatening eminent scientists. The journalist, one of the many BFFs of the Science Media Centre among the UK press corps, could suggest that my work is somehow enabling horrible behavior.
I also presume the article will focus not on the substance of my criticisms but on some of my strategies–like tearing up published papers in public presentations, sending multiple e-mails to researchers in my efforts to seek comment, or disseminating my concerns widely to public health officials, journal editors and others. I expect that it will convey claims from some of these researchers that these strategies are tantamount to harassment.
The piece is likely to include anecdotal accounts from patients who say they got better through CBT, GET and perhaps even the Lightning Process, and could suggest that my work is depriving people of the opportunity to obtain treatments that they want and need. As I have said previously, I cannot question people€™s experiences of improvement or recovery. But we generally do not develop public health policy or clinical guidelines based on anecdotal testimony but rather on the basis of scientific investigation. And the science in this domain is deficient, for all the reasons I have pointed out over the last few years.
Since I am posting this before the piece actually appears, it is possible things could change and my predictions about it will not be borne out.
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From my perspective, I have been engaging in vigorous and tough scientific criticism. Like many journalists and social commentators, I have sometimes used snark and sarcasm to make my points. I have not reviewed every single post or word I have written or said about this matter. But because I can get seriously agitated over the methodological and ethical lapses I have stumbled upon, I might sometimes have used language that, in retrospect, has been unhelpful and would have been better to avoid. I deeply regret if I have said or written anything that could be used as an excuse to avoid the substance of the debate about the many problems with this influential body of research.
Some of the controversy over my work, I suspect, relates to trans-Atlantic differences in what is considered robust expression of opinion and what is considered over-the-line. But let me say here, one more time, that I categorically condemn any sending or disseminating of death threats, threats of bodily harm, and any other kinds of threats. I also categorically condemn bullying, abuse and any efforts at intimidation, whether via online forums, Twitter, e-mail, Skype, Instagram, Snapchat, WhatsApp, any other media currently available or to be invented in future, or in person. There is simply no place for such behavior.
I also unequivocally condemn harassment. But what is considered harassment can sometimes be in the eye of the beholder. In the UK, for example, the CBT/GET ideological brigades and their enablers at the Science Media Centre have framed the filing of freedom of information acts as a form of harassment and vexatious behavior. I disagree with these notions. Progress in science depends on rigorous and spirited debate, something that the PACE authors and their colleagues appear to find offensive and distasteful. Since their science does not stand up to scrutiny–as evidenced by the 100+ experts who have signed open letters about PACE to The Lancet and Psychological Medicine–I suppose this reluctance is understandable.
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So let me discuss my e-mails, which I gather have caused distress to some of the people whose work I have criticized.
As readers know, I have been particularly critical of studies conducted by Professor Esther Crawley. I previously posted and explicated all my e-mails to Professor Crawley here. As I reported earlier today, Bristol in now investigating some of her work following questions raised by the UK Health Research Authority, which oversees the domain of research ethics. On top of that, one of her studies was slapped with an editor€™s note that acknowledged the serious concerns raised about the research.
I hope these details appear in the news story currently being prepared for publication, although I have no idea if they will. The fact that some of Professor Crawley€™s research is now under serious scrutiny should raise questions about the accuracy of and motivation for any claim that my work amounts to libel or harassment.
After Professor Crawley publicly accused me of libel two years ago and failed to respond to my requests for evidence or documentation, I sent a series of strongly worded e-mails to the board of the CFS/ME Research Collaborative. Professor Crawley at that time served as the organization€™s vice-chair. I felt it was within my rights to point out the deficiencies of the biopsychosocial research in this field, including PACE, and to ask the CMRC leadership whether it had any comments about the vice chair€™s libel accusation, given that her actions reflected badly on the group as a whole. I found CMRC€™s responses to be inadequate, and in my e-mails I expressed myself accordingly.
I have never e-mailed Lillibeth Larun, lead author of the Cochrane exercise review. However, I have criticized her work, both in blog posts and in meetings with health officials in Norway. I also organized a statement of support for Cochrane that outlined some of the issues with the exercise review. I reject any suggestion that such actions constitute harassment.
During the first year or two of this project, I sent many e-mails to the PACE authors and to Richard Horton, editor of The Lancet. Most of these involved efforts to obtain answers or comments about issues I was planning to raise in articles and blog posts, something that every journalist is expected to do. In other cases, I followed up my blog posts, even if they hadn€™t responded to my requests for comment, with e-mails providing links to posts I had written. This is also something I have routinely done in my years as a journalist. Since I wrote dozens and dozens of posts during this time period, I sent many dozens of these e-mails. At some point, I decided not to bother anymore.
*This next paragraph has been rewritten. See original paragraph at end of post.
I have never, so far as I can remember, e-mailed Sir Simon Wessely. In checking my twitter feed, I found a batch of tweets to him from the first year of my investigation; most of them were responses to some propaganda about PACE he posted shortly after my initial series. They all seem pretty standard and polite to me. In 2016, after Sir Simon commented on an excellent piece by journalist Julie Rehmeyer on the unraveling of the PACE trial, I tweeted that his remarks were drivel and nonsense. He promptly blocked me. Later on, when he involved a prominent American lawyer in the conversation, I joined the fray even though I remained blocked. I cannot exclude the possibility that there might be some other tweet conversations in which we both participated that I have not found. But if Sir Simon considers anything I wrote to be “harassment,” he has a remarkably low threshold for what that word means.
I have written numerous open letters to health officials, journal editors, members of Parliament and others involved in the debate, in many cases cc-ing others with an interest in the matter. These open letters have included strong criticism of the studies I have reviewed. I am sure the researchers involved in these studies have disliked the fact that I widely disseminated my negative views of their work. Their dislike is understandable but is not grounds for accusing me of harassment. It is important to note that no one has refuted the substance of my criticisms. They have disputed my interpretations. That is certainly their right.
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Today I sent back some answers to a final set of questions sent to me yesterday by the reporter. Here are some of them.
Please could you confirm that raised just under $88,000 in crowdfunding last year (April?) to pursue your campaigning work, blogs, talks and presentations
I don’t really think of it as a “campaign.” My crowdfunding was a “campaign,” because that’s the term that’s used–at least in the US. I have never envisioned myself as pursuing a “campaign” but rather conducting an ongoing investigation of bad science. But yes, I raised just under $88,000.
To clarify–that money goes directly to Berkeley, not to me, and I don’t see a big chunk of it. My 50% salary is $47,000. Almost $30,000 covers my employment benefits, mostly the health insurance I get through work. Berkeley takes a 7.5% cut. The few thousand $$ left-over I use for travel expenses.
In our conversation in New York in August, you said you had no medical qualifications and you were not a medical doctor. Is this still the case?
Ha! Of course, that€™s still the same. I have not become a medical doctor in the last six months! I am the son of an MD but have no particular medical qualifications. I have never claimed otherwise.
And please could you say whether you have any other medical or scientific qualifications?
During graduate school, I studied epidemiology, microbiology, anatomy, physiology as part of my coursework. I had multiple lab courses as well. I have considered getting a nursing degree as my next step in 2-3 years, so I have taken all the required prerequisite coursework. I cut a cadaver. Does that count?
I should also point out that it really isn’t necessary to be a genius or a medical scientist to understand that it is impossible to be “recovered” and “disabled” simultaneously on an outcome measure, and that any study that includes this anomaly–like PACE–does not belong in the domain of inquiry we call “science.” I remain astonished that you, the SMC, and others in the UK seem to feel this specific feature of PACE is not a problem. Can you or Dr Horton or Professor Sharpe point me to another study in the literature in which participants have met outcome thresholds at baseline, before any treatment at all? That aspect of the study caused universal shock among my colleagues at Berkeley, Columbia, etc. I do not understand how a reasonable scientist would endorse such a methodological paradox.
I will say the same thing about studies which are falsely portrayed as service evaluation and are exempted from ethical review on that basis. In the case of Professor Crawley’s school absence study, she herself conducted dozens of in-person interviews. This automatically invalidates any possible claim that the study could ever qualify as service evaluation. It is troubling that an experienced researcher like Professor Crawley would commit such an elemental error.
My understanding from our conversations is that you had a long-time friend who got sick in the early 1990s €“ was this friend diagnosed with CFS/ME? And was he/she part of the reason you became interested in this area of research?
Yes. I have no other personal stake. But he was diagnosed in the early 1990s, and I didn€™t look much at this till the XMRV situation in 2010-2012. So it’s not like I jumped on it. The whole thing confused me as much as anyone. I had never heard of PACE, but it came out during that time–early 2011. Once I recognized what a mess it was, especially after the recovery paper came out in 2013, I figured I€™d take a look at it when I could spare the time. That came a couple of years later. I showed it to my epidemiology and biostatistics colleagues at Berkeley before I took it on. They uniformly thought it was an atrocious piece of work, just like Professor Racaniello did when he first saw it, and Professor Bruce Levin, his biostatistics colleague at Columbia, who called PACE “the height of clinical trial amateurism.” My epi colleagues immediately decided to use it as a case study of awful research in their courses.
You€™ve told me in previous conversations that you campaign because you want to help patients with CFS/ME €“ to give them a voice they feel they don€™t have without you €“ is that still part of your motivation?
Certainly helping patients is part of my motivation, but the main motivation is to correct bad science. I didn’t realize what I was getting into when I started. In this case it appears that the scientific enterprise has been failing in its self-correcting imperative. I saw that patients were making cogent critiques in peer-reviewed journals, blog posts and all the appropriate venues. But very little was happening because their criticisms were framed as unreasonable, untrustworthy and anti-scientific, and so the concerns were ignored and dismissed. I find it very troubling when Professor Sharpe and others compare those who raise questions about PACE as akin to climate-change deniers.
An example of this unfortunate approach to debate was Australian professor Andrew Lloyd’s decision to slam those whose letters about PACE were published as correspondence in The Lancet. He accused them of making ad hominem attacks. This was clearly unfair. These letters expressed cogent and pertinent concerns. There was not an iota of ad hominem-ness (is that a word?) in them.
Also, you have described your mission as being determined to discredit the PACE trial and its authors, and to debunk what you see as bad science to make space for what you see as good science to take its place €“ is that a fair reflection?
My goal has certainly not been to “discredit” the PACE authors. I am sorry if I indicated or said that at any point; if someone were to point out such a statement to me, I would retract it. I have no respect for these people, given their gross violations of scientific norms, but I have no interest in them personally one way or the other. My goal initially was to push for an acknowledgement of the problems with this work and for the correction or retraction of misleading claims. Since that is an almost impossible task when editors fail to take due diligence or respond appropriately to valid criticism, my goal became to prevent the bogus findings from being cited in ways that would mislead people about the efficacy and safety of these treatments.
So it would not be correct to suggest that my motivation involves seeking to discredit the authors themselves. I certainly have wanted to discredit their work, and I would have much preferred them to behave like honest investigators and acknowledge the self-evident problems with their work and correct them. However, I recognize that discrediting them personally or damaging their reputations is a likely or inevitable byproduct of the work I’m doing. Had they responded appropriately and corrected the scientific record, I believe they could have minimized the ultimate reputational consequences of their actions.
It is certainly not my fault if, say, Professor Crawley’s reputation is damaged because others now see that some of her research is fraught with methodological and ethical flaws. I hope the fact that her work is now under scrutiny at Bristol and that one of her studies was slapped with an editor’s note acknowledging the issues I outlined will be mentioned in your story, since both of these developments are the result of my investigation. I hope you will also mention that she has refused to explain, support, or withdraw her outstanding libel accusation.
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*Correction:
In my haste to get this post out, I mistakenly wrote that I had only one direct contact with Sir Simon Wessely–after which he blocked me. I should have done a search rather than relying on my memory. I apologize for the error. Here is the paragraph as it initially appeared:
“I have never, so far as I can remember, e-mailed Sir Simon Wessely. In 2016, after he commented on an excellent piece by journalist Julie Rehmeyer on the unraveling of the PACE trial, I tweeted that his remarks were drivel and nonsense. (Or maybe nonsense and drivel. I can€™t really remember.) He promptly blocked me. That was my single direct contact with him.”
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