By David Tuller, DrPH
Update: About 20 minutes after posting this blog, I received the following communication from Ms. Paterson:
Dear Dr Tuller
Thank you for your email of 22 November.
If by a ‘cease and desist’ letter you mean a letter threatening legal action if the recipient does not stop a specified activity or behaviour, then I can confirm that the University of Bristol has not sent you or your institution such a letter.
However you will be aware that the University of Bristol has for many years enjoyed a close and valued collaborative relationship with the University of California, Berkeley, and it is my understanding that private and confidential communication has taken place at a senior level about your actions and behaviour towards staff involved with research into chronic fatigue syndrome and myalgic encephalomyelitis at the University of Bristol.
I note that this message from Ms. Paterson confirms that Professor Crawley’s statement about Bristol sending me a cease and desist letter is not true. I also note that it contains no evidence or documentation that anything I have written is inaccurate or in error, and that Professor Crawley has still not taken me up on my offers to correct any mistakes and post her full comment on Virology Blog.
I have not responded to Ms. Paterson at this point. I await further developments with interest.
Bristol University has an Esther Crawley problem. A week ago, I e-mailed Sue Paterson, Bristol’s director of legal services, asking her to clarify as soon as possible whether the university had sent me a cease and desist letter. Professor Crawley made such a claim in a November 17th talk at the University of Exeter, in response to my question about why she had accused me of libel and then refused to provide evidence that anything I wrote was in error. Her statement about this issue was clear and unambiguous: You have been so unbelievably defamatory and unprofessional that I had to get my university to send you a cease and desist letter, she said.
As I pointed out to Ms. Paterson, I have received no such letter. Since I cannot cease and desist anything if I don’t know what I am being asked to cease and desist from, I requested that she provide me with a copy of this letter immediately. I also asked her to explain, if no such letter actually existed, why Professor Crawley would make such an untrue statement.
Ms. Paterson has not yet responded, nor has anyone else from Bristol. Whether or not the university sent me a cease and desist letter is an empirical question with only two possible answers. Determining the facts does not require an extensive investigation. Ms. Paterson presumably knows whether a letter was sent, since it seems likely that it would have come from her department. While my understanding is that Bristol has 20 working days to respond to such a letter, I fail to see why it should take this long, especially given the urgency and seriousness of the matter.
So what to make of Bristol’s extended silence? I could be mistaken, but until informed otherwise I am taking Ms. Paterson’s non-response as confirmation that no letter was sent. My presumption, and again, I could be wrong, is that Bristol’s legal department needs more time to strategize about how to disappear this public relations disaster created by Professor Crawley, or at least how to mitigate the inevitable fall-out.
In fact, it seems to me that Professor Crawley doesn’t really need my “libellous” help in causing damage to her reputation. She appears to be doing a pretty decent job of that on her own. She has now accused me three times in academic settings of being libelous or defamatory. She has declined to take advantage of my repeated offers, conveyed via e-mail, to post her full response to my concerns on Virology Blog, as well as to correct any mistakes she can document. Her apparent conviction that a libel accusation is a valid substitute for a coherent defense of her questionable methodological and ethical choices is perplexing and obviously misguided.
Professor Crawley also raised the specter of consulting with the police, implying that I am engaged in dangerous and threatening activities. As Ms. Paterson undoubtedly knows, strongly worded opinions and interpretations, based on facts and related to a matter of significant public interest, are not currently illegal in the U.K. Nor is asking a question at a public event. My work does not pose a danger or threat to Professor Crawley’s person or physical safety. For her to suggest otherwise is ridiculous and offensive.
Her actions also seem to demonstrate once again that she is either unwilling or unable to provide adequate and credible responses to the serious criticisms I and others have raised. Instead, she slams patients as vexatious for filing freedom of information requests and attacks me as libellous and defamatory for posing tough questions.
Someone really needs to stage an intervention.
And on a related front€¦On November 3rd, the magazine New Scientist published an article about an important new study from Newcastle University. The study, called Cellular bioenergetics is impaired in patients with chronic fatigue syndrome, reported that patients suffer from mitochondrial dysfunctions that limit their ability to generate energy.
The story included the following enthusiastic quote from Professor Stephen Holgate, a well-known expert in immunopharmacology from the University of Southampton: These exciting results confirm what others have postulated but not been able to prove, namely that cells of patients with CFS are easily metabolically exhausted when put under any form of stress€¦In many ways, this is how patients describe their whole-body experience with CFS.
In addition to his position at Southampton, Professor Holgate is the chair of the CFS/ME Research Collaborative. In that capacity, he works closely with Professor Crawley, who serves as the organization’s deputy chair. He has proven himself to be a staunch supporter of her research. At the Science Media Centre’s press conference last year promoting the launch of FITNET-NHS, Professor Crawley’s trial of online cognitive behavior therapy for kids, Professor Holgate declared it to be high-quality research. In my post about FITNET-NHS, I criticized Professor Holgate’s willingness to offer unalloyed praise for this very problematic study.
Professor Crawley’s research on ME/CFS has largely focused on treating kids with cognitive behavior therapy and graded exercise therapy. (That is, until she decided to investigate the cult-like Lightning Process, more next week on that misbegotten mess of a study.) As described in the discredited PACE trial, both of these rehabilitative treatments are grounded in the hypothesis that patients are suffering from severe deconditioning but not from any underlying organic disease. The illness is presumed to be “reversible” with these therapies.
Professor Crawley has famously declared that PACE is a great, great trial, despite the abundant evidence to the contrary. She has misrepresented the reanalyses of the PACE trial data, which authoritatively proved that the investigators reported wildly inflated results by significantly weakening their outcome measures. With regards to FITNET-NHS, Professor Crawley has stated that two-thirds of the children in the online CBT arm of a similar Dutch study recovered after six months, even though that earlier study was also riddled with methodological flaws that completely undermine that finding.
Such claims pose an interesting dilemma for Professor Holgate. If New Scientist quoted him correctly and he genuinely believes the Newcastle study convincingly showed that cells of patients with CFS are easily metabolically exhausted when put under any form of stress, is he still convinced that online CBT is an appropriate intervention and that FITNET-NHS represents high-quality research? What does Professor Holgate now think about graded exercise therapy, which Professor Crawley is investigating in her MAGENTA trial? Does he share Professor Crawley’s belief that PACE is a great, great trial?
To simultaneously support both the Newcastle study and the treatments promoted by Professor Crawley and other members of the CBT/GET ideological brigades seems–at least to me–somewhat inconsistent and intellectually unsound. In Professor Holgate’s considered view, what is the plausible biological mechanism through which a course of CBT or GET could fix or “reverse” the dysfunctional energy production cycle identified by the exciting results of the Newcastle study? If the mitochondria are not generating sufficient energy for normal cellular function, how can changing patients’ thoughts about their illness and encouraging a steady increase in exercise resolve those physiological defects?
Professor Holgate is a smart guy, so perhaps he can provide reasonable and cogent answers to these questions. If so, it would be helpful if he could enlighten those of us who find it difficult to reconcile these divergent perspectives.
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