by Steven Lubet
On 1 June 2017, Professor Michael Sharpe presented the â€œSpecial Ethics Seminarâ€ at Oxford Universityâ€™s St Cross College. In his posted abstract, he asserted that â€œsome areas of scholarship are politicised (U.K. spelling in original),â€ including â€œthe role of psychiatric or psychological approaches in the treatmentâ€ of ME/CFS patients.Â Sharpe also likened ME/CFS patients to climate change deniers, claiming:
The use of such co-ordinated pressure group action against science was prominently seen in the field of climate change research but is now emerging in other areas.Â
Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME for short) is one of these.Â
The analogy is obviously aimed at critics of the PACE trial, of which Professor Sharpe was a principal investigator, but it is inaccurate, unfair, and insulting.Â First, of course, there is a nearly universal consensus among scientists about the reality of climate change, supported by many decadesâ€™ worth of objective data, which places deniers among extreme outliers who are impervious to evidence.Â Sharpeâ€™s theory that ME/CFS can be reversed through Cognitive Behavior Therapy and graded exercise, on the other hand, is shared within his own working group and accepted by many in the U.K. medical establishment, but it has been rejected or disregarded by highly credentialed researchers and scientists at major universities in the U.S., including Columbia, Stanford, and the University of California at Berkeley, among others.
More significantly, climate change denial has been backed by powerful political and economic forces â€“ including oil companies and their allies â€“ that have ulterior financial interests in preventing government environmental regulation.Â Criticism of the PACE trial, for the most part, has originated among patients whose life experience has caused them to question the validity of Sharpeâ€™s approach, but who otherwise have no interest other than the search for an effective treatment.Â
To put it starkly, President Donald Trump and the Koch brothers are climate change deniers, who in combination bring both a vast fortune and the power of the entire U.S. government to bear on their side of the issue.Â PACE critics are simply sick people, with almost no political clout, who have only logic and experience available to make their case. If not quite a smear, Sharpeâ€™s comparison of the two groups is a prime example of attempted guilt by association, which has no place in a scholarly discussion.
According to Sharpeâ€™s abstract, however, there is nothing less at stake in the PACE controversy than â€œthe future of scienceâ€ itself. While he allows the possible value of â€œopenness, interconnectedness and the patient voice the internet offers,â€ he is far more concerned by the threat of â€œthe coordinated harassment of researchers by email, the issuing of repeated and co-ordinated (sic) freedom of information requests and the publication of comment on numerous blogs.â€
Here again, Sharpe conflates obviously different phenomena for the apparent purpose of discrediting his critics.Â I recognize that some British ME/CFS researchers have been harassed in the past, by email and otherwise, although I have seen no evidence that it was â€œcoordinatedâ€ (sinister as the implication may be). Moreover, claims of harassment were evaluated in a U.K. judicial proceeding in which they were found to be â€œgrossly exaggerated.â€
In any case, the â€œrepeatedâ€ use of freedom of information requests is clearly distinct from harassing emails.Â Like it or not, the law in the U.K., and in most democratic countries, requires public access to government documents, including the data underlying publicly funded research studies.Â Regarding the PACE trial, this principle was affirmed by decisions from both the Information Commissionerâ€™s Office, which adjudicates freedom-of-information requests, and an appellate tribunal. These decisions forced the release of key PACE trial data, which led to the discovery that the results were overstated and ultimately unreliable. Sharpe may well feel aggrieved by this decision, but his position is not bolstered by associating the information-seekers with â€œharassment,â€ accusing them of coordination, or tarring them with the same brush as climate change deniers.
Perhaps Sharpeâ€™s actual presentation explained these points more reasonably than appears from his abstract.Â For that reason, I wrote to Sharpe and requested the text of his lecture.Â Recognizing his concern about email harassment, I assured him that my proposed commentary would be â€œmeasured and respectful,â€ in keeping with my firm commitment to â€œan academic discourse that maintains standards of civility.â€ Nonetheless, he did not reply.Â Nor have I been able to locate anyone who attended the event, which, unlike previous iterations of the St Cross Special Ethics Seminar, was closed to the public.
I attempted to obtain further information about the seminar series â€“ which is sponsored by the philosophy department at St Cross College â€“ and especially the reason for barring the public from Sharpeâ€™s presentation.Â I wrote to both a departmental administrator and a professor who is identified on the St Cross website as specializing in â€œpractical ethics,â€ but I got no answers.
Reading Sharpeâ€™s abstract, it is impossible to miss the irony in a psychiatristâ€™s concern about the implications of patient protests â€œfor the future of science.â€ Protesting patients, after all, greatly improved psychiatry when, in 1973, they finally obtained the removal of homosexuality as an officially designated â€œmental disorderâ€ to be treated with psychotherapy. It took years of sometimes disruptive activism to get mainstream psychiatrists to recognize the tremendous harm they had caused to the gay community, and even then the Diagnostic and Statistical Manual (DSM) continued to include â€œsexual orientation disturbanceâ€ until 1987. Many leading psychiatrists no doubt regarded the protests as harassment or even anti-science, but in fact they were simply pro-humanity.
Having specialized for many years in the study of professional ethics, I would very much like to know how Sharpe characterized the relationship between ethics and the criticism of his work.Â As to the future of science, however, I am certain of one thing:Â it will not thrive in secrecy.
Steven Lubet is the Williams Memorial Professor at Northwestern University Pritzker School of Law, where he specializes in professional responsibility and ethics. He has previously written about issues related to PACE and ME/CFS at The Faculty Lounge, including here, here, and here.