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 “prebuttal.”
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 “looking at research into ME/CFS and have come across your name frequently.”
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 article’s appearance by addressing some of the issues I expect to be highlighted. Although I’ve never “prebutted” a story this way, I’ve also never been in this situation before. Given the novelty of the circumstances, I’m really improvising here. In some ways, it feels like I’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 “disabled” and “recovered” simultaneously on a key measure. This anomaly alone—apart from all the other issues with PACE–should disqualify a study from being accepted for publication.
The reporter’s main argument in defense of the GET/CBT treatment paradigm—at least from what I could tell—seemed to be that he/she had spoken to patients who said they’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 issue—views well-known to anyone who has followed my work.
I actually have no idea what this piece will ultimately say; I’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 me—or it could slam patients and me equally. Besides including researchers’ charges that I have supposedly “harassed” 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 don’t love being photographed without having control over picture selection. I often look like a criminal suspect in photos, and—to quote the late Nora Ephron–“I [sometimes] feel [mildly] bad about my neck.” (Look her up if you don’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, I’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 researchers’ claims that I was engaging in “harassment.” 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 “social media abuse,” 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 “harassed” 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.)
“Harassment” 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 “harassment.” But they seem to have defined “harassment” 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 Crawley’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 “harassment,” 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 “harassment.” I kept pressing for details. Who is accusing me? What actions are they claiming should be construed as “harassment”? In addition to listing off the names of various complainants, the reporter offered some general information. It is apparently considered “harassment’ 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 “harassment,” 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 “harassment,” then I should have the opportunity to provide my perspective about that particular argument—and the reporter has a professional and moral obligation to allow me to do so.
Professor Sharpe’s accusation of “harassment” is equally unwarranted. Perhaps he found what some view as my “signature” act—tearing up print-outs of PACE and tossing the pieces in the air—to be beyond the pale. (I’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 “recovery” paper in Psychological Medicine. For good measure, at that event I also tore up one of Professor Crawley’s childhood prevalence papers, in which she tends to conflate “chronic fatigue” and “chronic fatigue syndrome.” But I digress.) Professor Sharpe’s distaste for my actions and my language—such as describing PACE as “a piece of crap”—is of course understandable. But that does not mean I have “harassed” him by anyone’s definition except perhaps his own.
While some researchers may consider rigorous assessments of the quality of their work to be a form of “harassment,” 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 possible—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 “harassment” 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 “libellous blogs” 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 Blog—at any length she chooses. She has also failed to provide me with any examples of inaccuracies or “libellous” statements that she wants me to correct. Challenging one another’s views and engaging in rigorous debate should be viewed as a valuable tool for correcting the scientific record, not as a form of “harassment.”
I also find it telling, and possibly reflective of the reporter’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 Blog’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 we’ll have to wait to find out for sure.
It’s sure been an exciting week!
14 responses to “And Another Prebuttal…”
The issue is that with the lax structure of who can claim they have CF, CFS and ME then its easy to find people to claim they got better through those methods. And thats before we apply the positivism “say nothing negative or you aren’t trying to get better” mantra that gets pushed in these things.
Its like me coughing for a few minutes, being put in the same class as someone with Pneumonia and then claiming that inhaling alcohol in an anti gravity room (because I’m feeling whimsical here) cures Pneumonia because I stopped coughing.
We don’t even know quite what is going on, I suspect a lot of recoveries (especially in teenagers going through puberty) are biochemistry changes etc. that we don’t even know how to measure. Its very easy to attribute those to whatever else is going on during the time even if they aren’t.
And thats where the BPS have their meddling in the public knowledge and mindset in their favour, no one really wants to believe things are complex and anecdote is a lot easier remembered than data that says “we don’t know really”.
They are following their usual tactic of conflating legitimate criticism, requests for data and so on as harassment. If the article is as I expect, then will be written to mislead and not inform readers. The best response is to point out this intentional conflation. I hope you will contact the editor and demand to be allowed to defend yourself. Even a negative response will be useful.
What may also be useful is asking other scientists to comment on this affair. I’m sure they will be horrified by this attempt to shut down criticism.
IIRC they have often used obsolete Oxford criteria to diagnose patients which means they would have patients with Depression who could improve with exercise…
This means even more sham, calling Depression ME which it most certainly is not. Thats a big reason those criteria are obsolete and no longer used by mainstream researchers. They fear accurate diagnosis because inaccuracy helps them disseminate their fraud and also provides anecdotal data to sway those who are not professional researchers.
One one pan of the sympathy scales, searching and uncomfortable questions aimed at professionals about the standard of their work and their pronouncements: on the other pan, the vast number of patients who have experienced very unpleasant attitudes, disbelief, and even harm due to these assertions. Hmm! Difficult balancing act, isn’t it?
It would have been very different if such researchers had been open to debate and challenge in the first place, instead of simply attacking those patients who disputed their conclusions.
‘It is apparently considered “harassment’ to seek comment by sending e-mails to researchers….’ –
then surely the reporter is harassing David with respect to HIS work? Pot, kettle, black.
‘…. and to alert people in positions of authority about breaches of ethical and methodological principles in research that is impacting the lives of patients’
– so we ignore all wrongdoings and let people get away with anything, do we? Who else are we supposed to go to if not to people in positions of authority? Are they really accusing David of being a playground snitch here? Perhaps it’s just not ‘British’ /’upper class’ enough for them?
‘Challenging one another’s views and engaging in rigorous debate should be viewed as a valuable tool for correcting the scientific record, not as a form of “harassment.” ‘
I quite agree. It’s a shame that leading UK medical journals seem to have a different view.
“It is apparently considered “harassment’ 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 would have thought it was a duty to report breaches of ethical principles to the relevant authorities. To make a claim of harassment here is like saying it is harassment to report a crime to the police. The fact there is an investigation suggests that reporting such was justified.
Definition of Harrassment – unwelcome and inappropriate verbal or physical conduct, or coercive behavior, where the behavior is known or reasonably ought to be known to be unwanted or welcome. The only thing you are doing is your job. They are having trouble understanding the fact that your job is showing how their “perception of superiority” towards our community is the only harassment that can be proven.
It makes me wonder whether this journalist is doing real journalism, or this is a case of the journalist having a client and offering to write a piece for the client.
It sounds to me that the journalist has already made up his/her own mind about the so called harassment case.
I’m sorry this is happening, David. If the story turns out to be as unbalanced as you suspect, I hope that the editor will at least give you the opportunity for a rebuttal, or publish a letter of support from biomedical researchers who understand just why PACE etc are severely flawed and should not be used to justify GET/CBT treatments anywhere in the world.
Since when is pointing out egregious flaws, in publications purporting to be academic, harassment? This is the nature of academic debate.
It sounds like someone is trying to deflect criticism by pulling strings in the media when they should be reevaluating their misguided experimental protocols and abandoning BPS themed handwaving.
Hey, if it’s published in England and says something that is nasty and untrue you can sue for libel !!
Why do authors of scientific papers have to give a correspondence address?
Just so people can get in touch with them and congratulate them on their marvellous piece of work?
Why does he or she not mention all those patiënts who get deteriorated from CBT/GET? And why does he or she simply not mention the facts of The Pace trial which point to scientific fraud. It looks like unbalanced journalism, harassment to ME patiënts and red herring to me.
All I want as a patient is good quality research that is relevant to the illness, ie accurate entry criteria, such as using ICC criterea if using the ME descriptor and PEM as primary symptom for the CFS descriptor. Using weak and vague criterea that can include depression and general fatigue is a huge issue. Conflating general chronic fatigue with PEM is what makes these studies so dangerous to patients. Patients are being harmed and this must be tackled within the scientific and medical communities as it’s the integrity of science and the scientific method that is at stake.
I also want to see studies with objective data and outcomes, such as using the 2 day CPET or mitochondrial testing, anything that definitively show physical improvements, rather than subjective patient questionnaires that can be influenced.
The fact that a lot of these psych trials have weak entry criteria, subjective data and outcome switching (cherry picking and altering how they use data trying to drive the result to a particular theory, rather than just letting the objective data speak for itself.) if the assertions of the PACE trial and similar can pass proper scientific scrutiny, I’d accept them, but they just don’t stand up to any rigourous scientific scrutiny.
The fact that this poor science is allowed to continue and all of the other shenanigans like patient blaming and powerful behind the scenes influence in supposedly neutral institutions and the mainstream media should be robustly challenged and I thank you for doing so, Mr Tuller.
Without you and other esteemed scientists these poor studies and dodgy shenanigans would continue to go unquestioned and continue harming patients. I hope that robust science and the truth win out against this powerful behind the scenes BPS lobbying and we can all move on to finding more effective treatments for patients with M.E. rather than waste everybody’s time with ineffective and harmful treatments. They can fling their mud at you, David, but science is on your side.