by Steven Lubet
On 1 June 2017, Professor Michael Sharpe presented the “Special Ethics Seminar” at Oxford University’s St Cross College. In his posted abstract, he asserted that “some areas of scholarship are politicised (U.K. spelling in original),” including “the role of psychiatric or psychological approaches in the treatment” of ME/CFS patients. 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.
Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME for short) is one of these.
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. First, of course, there is a nearly universal consensus among scientists about the reality of climate change, supported by many decades’ worth of objective data, which places deniers among extreme outliers who are impervious to evidence. Sharpe’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 – including oil companies and their allies – that have ulterior financial interests in preventing government environmental regulation. Criticism of the PACE trial, for the most part, has originated among patients whose life experience has caused them to question the validity of Sharpe’s approach, but who otherwise have no interest other than the search for an effective treatment.
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. 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, Sharpe’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 Sharpe’s abstract, however, there is nothing less at stake in the PACE controversy than “the future of science” itself. While he allows the possible value of “openness, interconnectedness and the patient voice the internet offers,” he is far more concerned by the threat of “the 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.”
Here again, Sharpe conflates obviously different phenomena for the apparent purpose of discrediting his critics. 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 “coordinated” (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 “grossly exaggerated.”
In any case, the “repeated” use of freedom of information requests is clearly distinct from harassing emails. 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. Regarding the PACE trial, this principle was affirmed by decisions from both the Information Commissioner’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 “harassment,” accusing them of coordination, or tarring them with the same brush as climate change deniers.
Perhaps Sharpe’s actual presentation explained these points more reasonably than appears from his abstract. For that reason, I wrote to Sharpe and requested the text of his lecture. Recognizing his concern about email harassment, I assured him that my proposed commentary would be “measured and respectful,” in keeping with my firm commitment to “an academic discourse that maintains standards of civility.” Nonetheless, he did not reply. 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 – which is sponsored by the philosophy department at St Cross College – and especially the reason for barring the public from Sharpe’s presentation. I wrote to both a departmental administrator and a professor who is identified on the St Cross website as specializing in “practical ethics,” but I got no answers.
Reading Sharpe’s abstract, it is impossible to miss the irony in a psychiatrist’s concern about the implications of patient protests “for the future of science.” Protesting patients, after all, greatly improved psychiatry when, in 1973, they finally obtained the removal of homosexuality as an officially designated “mental disorder” 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 “sexual orientation disturbance” 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. As to the future of science, however, I am certain of one thing: 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.
17 responses to “Guest Post: Questions About Professor Sharpe’s ‘Special Ethics Seminar’”
Homosexuality is a part of human life. We are the richer for our diversity. Where sexual orientation is pathologized there is a risk of prejudice, inequality and mistreatment.
Paedophilia is part of human life but we are not the richer for it. As to inequality, there can never be equality between that which is natural and that which is unnatural.
Love or lust shared between consenting adults is a very different thing to paedophilia, which by age alone cannot be said to be consenting and is always abusive.
James, do you really believe that there is nothing wrong with homosexuality? That it’s a healthy viable life and there’s nothing degrading and perverse about it? Would you recommend it to children? And do you think that love and lust are equivalent? Or would you say that actually they are opposites, because love can be satisfied whereas lust never can be, and love is constrained by the best interests of the one loved whereas lust is self-interest?
Michael Dyson Curing disease is also “contrary to nature”. Most of civilisation is.
The UK Tribunal that cited David Tuller’s work as one of the reasons for its decision?
Civilisation is neither above nor contrary to nature in the sense that we can invert human sexual and reproductive anatomy and physiology. Homosexuality is literally a disorder. But I don’t mean that with persecutory intent towards homosexuals; just that I think it’s high time we all faced facts and moved away from the politically correct fiction that we can normalise homosexuality and regard it with indifference or even approval.
“Civilisation is neither above nor contrary to nature in the sense that we can invert human sexual and reproductive anatomy and physiology.”
Actually it is.
Do you wear condoms?
Re-reading this, it strikes me (not for the first time) that the biggest reason why Sharpe and co. keep assuming that ME patients are “coordinated” is that they cannot think of any other reason for the size of the reaction they’re getting.
But the truth is simple: social media allows people who aren’t professional scientists to find out about research on a much wider scale than used to be seen, and it allows them to react to it quicker and more personally. And people who are used to a slow dribble of feedback via a letters page in a printed journal find it difficult to adjust to the immediacy (and the directness, and the lack of screening by an editor for relevance and concision) that is found on Facebook, Twitter, forums and online journals.
That’s not a coordinated resistance movement; it’s just a bigger audience.
As much as I hate to defend Wessely, I have seen a fair amount of negativity directed at vaccines in some ME discussion groups. Not everywhere (and I hope I can say with accuracy, not most people) but certainly enough to be called substantial. But then, given that many people’s ME was triggered by an immune stressor of some sort – including vaccinations – I can’t blame people who don’t have a medicine/biology background for feeling wary after a bad experience, even when they’re getting close to the dark side of the Force!
That’s a revealing point because it is only by the use of condoms that male homosexuals avoid the otherwise lethal infectious consequences of their behaviour. You confuse technology and civilisation. Civilisation ultimately pertains to morality, whereas technology is in itself neutral.
There have been multiple research papers into the effect of the seasonal flu vaccine upon ME patients. Basically, they show that something whacky happens to our immune system, identified via blood tests, which also correlates with increased symptoms. This reaction lasts at least a month, which is when the longer studied ended. The vaccines themselves were effective. Despite not fully understanding the abnormal immune effects occurring in ME patients, or the ultimate duration of those effects, the flu vaccine was still enthusiastically recommended in the conclusions, which I do take issue with.
Is the protection from the flu vaccine worth the side effects? Maybe not. But I think nearly all ME patients are still in favor of vaccinating against diseases which are much more likely to be deadly or life-altering. Of course there are a few exceptions, but I expect they’d be anti-vax regardless of having ME.
And everyone would like to have more information on what causes adverse reactions to vaccines … the odds might be 1 in a million, but people are terrified of their child being that 1. Instead of weighing the pros and cons objectively, a lot of parents will rely on the sensational cases they’ve heard in the media – and that’s primarily going to be kids with autism (regardless of actual connection), not the massive outbreaks of crippling diseases that vaccines now prevent.
Of course homosexuality is natural. It happens all the time in nature. For example, 30% of Laysan albatross couples are lesbian, due to a gender imbalance in the number of males born. They survive just fine, look rather happy dancing with each other on bird nesting webcams, and raise their own eggs (with a sperm donor) and foster eggs (relocated from dangerous areas) with great success.
“…the interaction of other instincts (particularly dominance) can result in behavior that appears to be homosexual. Such behavior cannot be equated with an animal homosexuality. All it means is that animal sexual behavior encompasses aspects beyond that of reproduction.” Dr. Antonio Pardo, Professor of Bioethics at the University of Navarre, Spain
Allegedly gay male penguins in a Californian zoo were no longer displaying any gay behaviour after the introduction of a female penguin (http://www.conservapedia.com/Homosexuality_in_animals_myth).
Dear Dr Tuller,
While you and others chose to remain silent, the mistreatment continued. Eventually I thought it better to accept that M.E advocates have a serious problem with abuse and I have conceded this much to Prof. Wessely.
The matter is a very serious one. The mental abuse of an already physically weakened patient population is a dangerous thing. Further the wilfully blind-eye turned by M.E community leaders to the issue allows the targets of abuse to become isolated from their online support.
Under such circumstances I think the problem can only get worse. I believe there is a clear danger that current M.E community behaviour could result in tragedy.
James David Chapman, @batteredoldbook.