By David Tuller, DrPH
Update: Since posting this several hours ago, I have learned that the story I’ve been “prebutting” is not in fact likely to appear imminently; I suppose that means it could be weeks before publication. I’m not sure whether I misinterpreted the reporter’s statement that obtaining my response to the “harassment” claims was the final outstanding issue or whether plans have shifted around for this or that reason. Hard to know.
So I guess for now I have expressed my thoughts about this matter and will make no further predictions about possible content or timing of the piece–unless or until I feel that I need to. In journalism, as in life, nothing happens until it happens. Time for me to focus on other posts that I have been meaning to get to.
Sometimes the best defense is a good â€œprebuttal.â€
I have recently been in a very peculiar position–wrestling with how to respond to the information that a major news organization was about to publish an article examining my work from what appeared likely to be a negative perspective. I have known about this article for a while; the reporter interviewed me in New York in late August. The reporter contacted me, according to the initial e-mail, because he/she was â€œlooking at research into ME/CFS and have come across your name frequently.â€
Then, last Wednesday, the reporter sent me an e-mail seeking an immediate response to some final questions, suggesting that the article was finally about to appear. After some consideration and consultation, I decided to jump-start the discussion in advance of the articleâ€™s appearance by addressing some of the issues I expect to be highlighted. Although Iâ€™ve never â€œprebuttedâ€ a story this way, Iâ€™ve also never been in this situation before. Given the novelty of the circumstances, Iâ€™m really improvising here. In some ways, it feels like Iâ€™ve been engaged in a weird kind of academic performance art.
During my August interview with the reporter, I was struck at how little apparent interest he/she demonstrated in the scientific flaws I and others have documented in this body of research. Our discussion focused mostly on why people would so forcefully challenge the diktats of the GET/CBT ideological brigades and whether my investigation was in essence depriving patients of access to treatments that might help them. The reporter was apparently unbothered, for example, that PACE participants could be â€œdisabledâ€ and â€œrecoveredâ€ simultaneously on a key measure. This anomaly aloneâ€”apart from all the other issues with PACE–should disqualify a study from being accepted for publication.
The reporterâ€™s main argument in defense of the GET/CBT treatment paradigmâ€”at least from what I could tellâ€”seemed to be that he/she had spoken to patients who said theyâ€™d gotten better with these interventions. I pressed the point that public health policy and clinical guidelines are supposed to be based on valid research, not anecdotal information. In subsequent months, the reporter and I had additional e-mail exchanges in which I continued to express strong views about this issueâ€”views well-known to anyone who has followed my work.
I actually have no idea what this piece will ultimately say; Iâ€™m making educated guesses from the questions posed to me and others. The article could focus mostly on patients or it could focus mostly on meâ€”or it could slam patients and me equally. Besides including researchersâ€™ charges that I have supposedly â€œharassedâ€ them, it could include criticisms of my crowdfunding or my active participation in online debates on patient sites and forums. Perhaps the story will try to link me to potentially nasty e-mails that other people might have sent to researchers, especially if such messages reference some of my posts or public presentations.
Last month, a photographer contracted by the news organization came to my home in San Francisco to take shots for the piece. I donâ€™t love being photographed without having control over picture selection. I often look like a criminal suspect in photos, andâ€”to quote the late Nora Ephron–â€œI [sometimes] feel [mildly] bad about my neck.â€ (Look her up if you donâ€™t know who she is!). Whatever. Last year CNN.com published a story I wrote about the cost of dental care, and the accompanying photo shows me putting my partial denture into the toothless upper left quadrant of my mouth. So, you know, Iâ€™ll survive.
When the reporter touched base with me last week, he/she explained that the story was just about ready to go. But the editors wanted me to provide a response to researchersâ€™ claims that I was engaging in â€œharassment.â€ The implication would seem to be that the reporter had not found it necessary to seek such a comment, but perhaps I am over-interpreting.
The question surprised me. I have been accused of libel, defamation, unprofessionalism, triggering â€œsocial media abuse,â€ acting in ways that warranted intervention from the police, and so on. But no one, as far as I can remember, has informed me directly that I have â€œharassedâ€ them. (Just to be clear: My memory is not infallible. If someone has previously made this accusation to me directly, it did not create much of an impression.)
â€œHarassmentâ€ is a word with both colloquial and legal definitions, and these charges seem to me to be efforts to blur the distinctions. I understand that the researchers I am criticizing might genuinely feel that my work is tantamount to â€œharassment.â€ But they seem to have defined â€œharassmentâ€ downward to ridiculously low levels. And they have wielded this term promiscuously, I believe, to squelch tough but legitimate criticism of their work and deflect the focus on their serious violations of core scientific standards.
What possible explanation is there for the overlap in entry and outcome thresholds in PACE, for example? What possible explanation is there for Professor Crawleyâ€™s decision to exempt her school absence study from ethical review based on a completely unrelated research ethics committee letter? To put it bluntly, there are no reasonable or acceptable explanations for these and many other flaws in these and related studies.
In response to the request for a comment about the charges of â€œharassment,â€ I told the reporter that I needed the details. He/she explained that the researchers considered my overall investigation and my methods of pursuing it to be â€œharassment.â€ I kept pressing for details. Who is accusing me? What actions are they claiming should be construed as â€œharassmentâ€? In addition to listing off the names of various complainants, the reporter offered some general information. It is apparently considered â€œharassmentâ€™ to seek comment by sending e-mails to researchers and to alert people in positions of authority about breaches of ethical and methodological principles in research that is impacting the lives of patients.
I have still not been given a chance to respond to specific claims from individuals that my work is tantamount to â€œharassment,â€ including Professor Crawley and Professor Michael Sharpe. If Professor Crawley, for example, is going to be cited in the upcoming piece as believing that my decision to attend her talk at Exeter and ask a question she found off-putting constitutes â€œharassment,â€ then I should have the opportunity to provide my perspective about that particular argumentâ€”and the reporter has a professional and moral obligation to allow me to do so.
Professor Sharpeâ€™s accusation of â€œharassmentâ€ is equally unwarranted. Perhaps he found what some view as my â€œsignatureâ€ actâ€”tearing up print-outs of PACE and tossing the pieces in the airâ€”to be beyond the pale. (Iâ€™ve done this twice; the second time, at the dinner before the 2017 Invest in ME conference, I tore up not only the 2011 Lancet paper but also the 2013 â€œrecoveryâ€ paper in Psychological Medicine. For good measure, at that event I also tore up one of Professor Crawleyâ€™s childhood prevalence papers, in which she tends to conflate â€œchronic fatigueâ€ and â€œchronic fatigue syndrome.â€ But I digress.) Professor Sharpeâ€™s distaste for my actions and my languageâ€”such as describing PACE as â€œa piece of crapâ€â€”is of course understandable. But that does not mean I have â€œharassedâ€ him by anyoneâ€™s definition except perhaps his own.
While some researchers may consider rigorous assessments of the quality of their work to be a form of â€œharassment,â€ I’ve always been eager to engage in discussions about any possible problems with my own work. Readers of Trial By Error know that I am committed to correcting any errors as quickly as possibleâ€”whether they have been pointed out to me by others or whether I have noticed them myself. That is one reason why vague accusations of â€œharassmentâ€ are frustrating and difficult to respond to. If there are problems with what I have written, tell me what they are so that I can consider if changes should be made.
Professor Crawley, for example, accused me of writing â€œlibellous blogsâ€ during her inaugural lecture at Bristol. And yet for some reason she has declined my repeated public and private offers to post her criticisms and concerns on Virology Blogâ€”at any length she chooses. She has also failed to provide me with any examples of inaccuracies or â€œlibellousâ€ statements that she wants me to correct. Challenging one anotherâ€™s views and engaging in rigorous debate should be viewed as a valuable tool for correcting the scientific record, not as a form of â€œharassment.”
I also find it telling, and possibly reflective of the reporterâ€™s perspective, that he/she does not appear as of yet to have contacted any of the five leading scientists and academics mentioned by Professor Racaniello in his response to questions posed to him. All of them have signed one or more of Virology Blogâ€™s open letters and would vouch for the accuracy and significance of my concerns.
I suppose it is possible such interviews have happened and no one has bothered to inform me, but that seems unlikely. Or perhaps the reporter has engaged in proper due diligence and sought comments from different experts who have been critical of the research behind the GET/CBT approach. I guess weâ€™ll have to wait to find out for sure.
Itâ€™s sure been an exciting week!