Trial by Error, Guest Post: Questions About Professor Sharpe’s ‘Special Ethics Seminar’

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.

Comments on this entry are closed.

  • Anil van der Zee 3 July 2017, 12:02 pm

    As a gay man and ME patient this says it all. Great. Thank you for that ❤️

    “Many leading psychiatrists no doubt regarded the protests as harassment or even anti-science, but in fact they were simply pro-humanity.”

  • Stephen Wright 3 July 2017, 12:07 pm

    thanks very good.

  • Trish Davis 3 July 2017, 12:24 pm

    I would say the climate science versus climate change deniers is a very useful parallel for the biomedical science versus psychobabble in the understanding of ME/CFS. Professor Sharpe’s problem is that he doesn’t realise he’s the one in denial of good science. His parallel is Donald Trump, not Charles Darwin.
    Thank you Steven Lubet for shining a light into the murky world of the ME science deniers. I think it is significant that they are so afraid of being found out for promoting their science denying nonsense that they are not prepared even to have a discourse with a professor of ethics when they have just presented a talk on ethics.

  • Scott Simpson 3 July 2017, 12:41 pm

    Thank you for exposing Sharpe for the charlatan he is.

    Keep up the good work – millions of people around the world with ME need you in our tiny, but growing, corner. You give us hope.

  • Valentijn 3 July 2017, 12:41 pm

    It really is perverse, that Sharpe and his colleagues ignore the existence of extensive biomedical research, then say patients are the science denialists. That they spend years and decades smearing patients in the media, and go on to spuriously accuse patients of harassment. That they claim to champion science, after spending 250,000 pounds of public money to try to hide the data which contradicts their published claims. And now they claim to championship openness from behind closed doors.

    Why does British academia tolerate their behavior, when they make such bizarre and easily disproven claims?

  • Wendy Boutilier 3 July 2017, 12:44 pm

    Think the only thing I can add to this is that PWME have been profoundly hurt by the deniers of good Science. Sharpe & friends (PACE Cult) have never been under any accountability before and they are fighting dirty hoping that we will collapse from the fight. Not going to happen.

  • Anne 3 July 2017, 12:49 pm

    Really ironical that an author of the flawed PACE trial lectures about ethics and science.

  • A.B. 3 July 2017, 12:58 pm

    British Academia is probably for the most part ignorant about biomedical ME/CFS research, precisely because the CBT/GET proponents do not acknowledge biomedical research findings that contradict their model.

    Also it appears that few researchers actually know how to distinguish a well designed RCT from a flawed one. That might have something to do with poor methodology being the foundation of so many careers and the British CBT industry.

  • Paul_Watton 3 July 2017, 1:00 pm

    Thank you for your insight Prof. Lubet.
    There are many well-known historical examples of persecution of minority groups, by those who sort to impose their ideology on the world, and whilst they may not be publicly burning patients at the stake, I feel sure that the Machiavellian, subtly malign, actions of Professors Sharpe, Wessely, White, Chalder (and others), towards ME/cfs patients, will soon be publicly acknowledged as a similar act of tyrany.

  • A.B. 3 July 2017, 1:16 pm

    Thank you Prof. Lubet. Your participation and contributions are much appreciated.

    Speaking of the gay community, there are similarities between “gay conversion therapy” and the cognitive-behavioural approach to ME/CFS. In the absence of a cure, patients with chronic illnesses need to learn how to live with it and build a new identity. This adjustment process is more painful if patients are disbelieved or shamed.

  • Olivia Rowe 3 July 2017, 1:33 pm

    Prof Sharpe is displaying textbook projection. He believes ME is a psychiatric condition and refuses to acknowledge the plethora of biomedical research.
    Sorry Professor Sharpe, you’re on the bench with the climate change deniers on this one.

  • Sue Wilson 3 July 2017, 1:47 pm

    Professor Lubet, your comment on this is so important. ME patients have been attacked by Sharpe’s lecture. How can we respond when he has told people our voices don’t count for anything and are out of turn and unethical? We are backed into a corner and are extremely vulnerable. Thank you for bring your years of experience to address this injustice to me and many, many more people with ME.

  • Erik Johnson 3 July 2017, 2:33 pm

    https://uploads.disquscdn.com/images/3f4fb86350cf44233cf3c82d4a07b7c43bf35e071c964b345e5e106db79ddc07.jpg

    When the CDC coined CFS in response to this, and other compelling evidence, I thought the days of “It’s All In Your Head” were over.

    Anyone could hold up the newspaper and ask “Doctor, do you honestly believe that something in my head can create an immune abnormality that has never been seen before?”

  • Diane Kirk 3 July 2017, 5:56 pm

    Thank you Professor Lubet for this excellent reasoned article. We need more voices like yours.

  • Lolly 3 July 2017, 10:31 pm

    Thank you.

  • Moon 3 July 2017, 10:48 pm

    Professor Lubet, thank you for expressing an alternate perspective to that of Professor Sharpe. How it’s deemed OK to disseminate misinformation about a vulnerable patient population from behind closed doors, I don’t know. Then to refuse professional discussion when contacted – this exemplifies a protectorate of privilege. Patients are excluded from such protections; and continue to wait for large chunks of research funding to be appropriately allocated so they can one day regain their health.

  • Moon 3 July 2017, 10:51 pm

    Hear, hear.

  • Garrett W. 3 July 2017, 11:29 pm

    Thank you Professor Lubet

  • Steve Hawkins 4 July 2017, 12:03 am

    We are seeing the same projection happening in the US at the moment, where the overwhelmingly right wing fundamentalist government and its supporters are in the process of organising witch hunts against everyone who points out the truth, as ‘democrat terrorists’ and ‘fake news’ media.

    Incidentally, as for climate change deniers, Sharpe ought to try following a few connections within the ‘Science Media Centre’ which, no doubt, organised his lecture. CEO Fiona Fox, is sister of Claire, who has her own libertarian lobby group ‘The Institute of Ideas’, and her and her pals spent decades attacking environmentalists just for the fun of it. In the early days it was pouring scorn on the idea of Global Warming, and no amount of complaints to the BBC, who gave them a platform, ever made any difference. Eventually they turned their wrath against the GM protesters, and the SMC was set up to lobby on behalf of David Sainsbury and the GM industry, and their climate contrarian stance gradually went silent.

    The environmentalists and true scientists were proved perfectly right on climate change in the end, but not until after decades of obfuscation and pointless debate has made it too late to do much to avert serious consequences. Sharpe and his backers at the SMC are now doing an almost blow by blow replay of the climate contrarians’ attack on the environmentalists, but now their wrath and all their lobbying dirty tricks are aimed at defenceless patients. Patients who are undeniably in the perfect position to know for a certainty that Sharpe is wrong. These are our bodies: we know what they can and can’t do; we probably tried all ‘his’ obvious mind and exercise tricks countless times before he’d even heard of M.E; we are just as capable of rational thought as he and his cult are; and if he does not accept when we tell him he is wrong: then all he is doing is, in plain words, calling all M.E patients ‘liar’ over and over again. Why is this even allowed?

  • Sealion 4 July 2017, 2:11 am

    Thank you so much for standing up for patients in the UK who are routinely ignored and denied a voice. It’s so frustrating to keep trying to educate Drs and the wider public but the PACE vested interest bandwagon has such good PR and media contacts. The UK press are usually investigative but seem to fall for anything anyone with a medical qualification says when it comes to ME. Go USA!

  • Wolfita 4 July 2017, 2:33 am

    Having done CBT and GET and been pressured by people in positions of trust to believe things I knew were wrong, I think it is just as much of a violation as conversion therapy except that it will damage you physically as well as psychologically. And ME is a condition with no redeeming features and we all want to rid ourselves of it. At least homosexuality is fun.

  • Alex Young 4 July 2017, 4:21 am

    The link between environmental denial and ME was covered in the book Skewed by Martin Walker, which I wrote a review of. You can find part one of my review here: http://forums.phoenixrising.me/index.php?entries/greenwashing.1258/

  • malfolio 4 July 2017, 4:49 am

    Well, if you can’t cure ’em, try to blame ’em, eh? When Wessely was gaining traction with his “death threats” story in 2013, he smeared ME patients by association with anti-vaxxers rather than climate change denialism: “there is a substantial crossover between ME activism and the anti-MMR brigade.”
    https://www.thetimes.co.uk/article/this-man-faced-death-threats-and-abuse-his-crime-he-suggested-that-me-was-a-mental-illness-t250dr25xg5

  • Lady Shambles 4 July 2017, 5:40 am

    This is an excellent commentary, not least for being so benevolent in giving Sharpe the benefit of the doubt given the secrecy and (by implication of the non-responses to a request for information) reluctance to provide proper evidence of the complete lecture, such that Lubet does not ‘pronounce’ on the basis of the abstract alone. A very professional approach. Sadly unmatched by a similar professionalism on the side of the PACE PI.

    As a patient I don’t have to be so even handed. I suspect the short abstract is indicative of the presentation itself. The irony is of course that the ‘deniers’ with all the backing of an Establishment political clout (not to mention thumbscrews on UK media) are indeed the members of the cabal sometimes known as The Wessely School, of which Peter White is a central character. When he says “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.” he is describing himself & the juggernaut of the BPS model which via MUPS is invading every area of British medical life from the top down. It’s insidious and very worrying.

    We know that PACE has acquired a reputation for being an example of such problematic research practice that it is now being used, & with some amusement in some quarters, in US university lectures and presentations as as example of how NOT to ‘do’ research. For anyone in doubt about quite how bad the PACE Trial actually is and might ponder the calibre of mathematician who recognises its flaws and is prepared to write about them, look no further than Recbecca Goldin, mathematician par excellence (and clearly a far better statistician that those who cobbled the PACE Trial papers or whom The Lancet employed for its ‘endless rounds of peer review’ ): http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/

    As a patient it is a relief to witness people of equivalent calibre in their different fields interrogating the ‘evidence’ that the BPS/ Wessely School have been promulgating for years, and finding it wanting. Thankfully we now have Nobel laureates at work to untangle the intricacies of the mechanism of this severe and very disabling disease (and it has nothing to do with ‘aberrant thought processes’) , we have journalists (not from the UK needless to say) who are willing to write about the way in which the David and Goliath fight has been maturing over the last 30 years to the detriment of all patients (because until very recently sick patients have had to fight the battle unaided) and we have academics such as Lubet willing to make observations based, in his case, on a proper understanding of what ‘ethical’ actually means.
    When one is told ‘black’ is ‘white’ for decade after decade then the acknowledgement that others recognise one’s truth for being the reality is reassuring. However, suffering very real and exquisitely disabling physical disease for multiple decades needs more than this. We need care, we need ameliorative options…. biomedical options. The sooner the BPS model is annihilated the better. My thanks goes to all those academics with the intelligence, the morality and the will to change this appalling state of affairs.

  • Luke 4 July 2017, 5:49 am

    Prof White is concerned with the very future of science itself? Open labelled trials, subjective outcome measures, outcome switching during trials, to name a few things that to my knowledge do not drive science forward and do not constitute good science i.e. reliable results.

    If the original outcome measures of the PACE Trial were adhered to in the trial instead of being switched mid trial it meant that GET/CBT were shown not to be effective treatments of ME/CFS. Period. Is it just coincidence that those original outcome measures were abandoned mid trial and replaced with new ones mid trial and that those new outcome measures then said GET/CBT was somwhat effective treatment? Why weren’t both sets of results published in the interest of driving science forward? I thought openness was a good thing. Good science stands up to scrutiny?

    Climate change stands up to strict scientific scrutiny. Does the PACE Trial stand up to the same scrutiny when scrutinized by scientists not connected with these psychiatrists in Britain? That is the only question here.

  • Lady Shambles 4 July 2017, 7:24 am

    I made a very long comment which was deleted as spam! Is it possible to restore it please?

  • clark ellis 4 July 2017, 7:58 am

    Thank you for bringing this to light, I enjoyed your balanced writing and I agree that science cannot progress in secret. I think the reason these sorts of things are kept somewhat hidden is because they don’t want an open debate about it, their narrative clearly does not stand up to scrutiny and will obviously be open to criticism by reasonable, intelligent people if it comes to light. Open debate on these matters would mean losing their control over the narrative they chose to promote.

    The UK narrative has been controlled for decades by a small group of people who have some influence through their academic positions. And until other academics recently stepped in, this narrative had free rein, it was unchallenged by anyone with a voice. This meant science in this field required little or no evidence, claims were not questioned, poor work was given a free pass and labelled as excellent, and there were issues around ethics. I shouldn’t use the past tense really, much of this continues. Unfortunately this is not the first time this tactic of trying to associate patients and academic critics with climate change deniers and other such anti-science groups had occurred in this field. The purpose is obvious and I find such tactics highly distasteful.

    This historical context is important because the beliefs about patients and critics that have been laid down for years remain pervasive in people’s minds even today and that is how these sorts of things are allowed by others to still occur – people helped make this seminar talk happen, they authorized it, they didn’t challenge such an outrageous and unreasonable association being made , they didn’t respond to your emails when you questioned it, etc. I ask myself why and I think it is because people have basically been conditioned over a long period to believe the view they have been presented about patients and those critical of work in the field of ME/CFS. I suppose they’re not using their own minds, questioning, but instead blindly accept what they have heard in seminars just like this one over the years.

    Thank you for writing this article, I hope you will write more.

  • Lady Shambles 4 July 2017, 9:33 am

    This is an excellent commentary, not least for being so benevolent in giving Sharpe the benefit of the doubt given the secrecy and (by implication of the non-responses to a request for information) reluctance to provide proper evidence of the complete lecture, such that Lubet does not ‘pronounce’ on the basis of the abstract alone. A very professional approach. Sadly unmatched by a similar professionalism on the side of the PACE PI.

    As a patient I don’t have to be so even handed. I suspect the short abstract is indicative of the presentation itself. The irony is of course that the ‘deniers’ with all the backing of an Establishment political clout (not to mention thumbscrews on UK media) are indeed the members of the cabal sometimes known as The Wessely School, of which Peter White is a central character. When he says “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.” he is describing himself & the juggernaut of the BPS model which via MUPS is invading every area of British medical life from the top down. It’s insidious and very worrying.

    We know that PACE has acquired a reputation for being an example of such problematic research practice that it is now being used, & with some amusement in some quarters, in US university lectures and presentations as as example of how NOT to ‘do’ research. For anyone in doubt about quite how bad the PACE Trial actually is and might ponder the calibre of mathematician who recognises its flaws and is prepared to write about them, look no further than Recbecca Goldin, mathematician par excellence (and clearly a far better statistician that those who cobbled the PACE Trial papers or whom The Lancet employed for its ‘endless rounds of peer review’ ): (links seem to trigger a spam response. for interest please search for “PACE: The research that sparked a patient rebellion and challenged medicine. Rebecca Goldin’).

    As a patient it is a relief to witness people of equivalent calibre in their different fields interrogating the ‘evidence’ that the BPS/ Wessely School have been promulgating for years, and finding it wanting. Thankfully we now have Nobel laureates at work to untangle the intricacies of the mechanism of this severe and very disabling disease (and it has nothing to do with ‘aberrant thought processes’) , we have journalists (not from the UK needless to say) who are willing to write about the way in which the David and Goliath fight has been maturing over the last 30 years to the detriment of all patients (because until very recently sick patients have had to fight the battle unaided) and we have academics such as Lubet willing to make observations based, in his case, on a proper understanding of what ‘ethical’ actually means.
    When one is told ‘black’ is ‘white’ for decade after decade then the acknowledgement that others recognise one’s truth for being the reality is reassuring. However, suffering very real and exquisitely disabling physical disease for multiple decades needs more than this. We need care, we need ameliorative options…. biomedical options. The sooner the BPS model is annihilated the better. My thanks goes to all those academics with the intelligence, the morality and the will to change this appalling state of affairs.

  • James David Chapman 4 July 2017, 10:37 am

    Steven Lubet: “his position is not bolstered by associating the information-seekers with ‘harassment”

    Prof Coyne: “You are an assaultive assh*le; Stop harassing me or I will report you”

    Steven Lubet: “in keeping with my firm commitment to “an academic discourse that maintains standards of civility”

    Dr Tuller: “I don’t mind yelling ‘f*** you’ and tearing studies up in public”

    Steven Lubet: “Nonetheless, he did not reply.”

    “If Dr Tuller said “F*ck you!” to @NIHDirector or @WesselyS or others; Would you, @Invest_in_ME, @MEActNet or @profvrr support him? #pwme”

    No reply.

    @batteredoldbook

  • Steve Hawkins 4 July 2017, 2:24 pm

    Thanks. I don’t remember the Walker book but I followed the skewing of debate for decades, first hand, as an FoE campaigner and round the clock Radio 4 listener, so I’m well aware of the tricks used and the media complicity.

    Interestingly, Google traces occurrences of the word ‘greenwash’ in books back as far as the 1840s, but the main explosion in use came about 1990. The actual practice of greenwash probably began in ernest with Edward Bernays, who more or less invented PR using his uncle Sigmund Freud’s ideas. His major success was in getting women to smoke with his ‘Torches of freedom’ campaign, for which, he is probably one of the most misery-causing people who ever lived.

    Adam Curtis did a great documentary series on how this all works, and you can watch it in full on Youtube. Here’s the Wiki review of it:
    https://en.m.wikipedia.org/wiki/The_Century_of_the_Self

    Chomsky continued the theme with his ‘Manufacturing Consent’.

    All this should bring out just how the psychology profession became able to wield such power, and why it is so easy for them to use a century of experience against anyone or any idea that they want to crush.

  • James David Chapman 4 July 2017, 7:13 pm

    Steven, I believe M.E advocacy is operating double standards that undermine the content of your blog post.

    James/.
    @batteredoldbook (Twitter).

  • Valentijn 5 July 2017, 3:37 am

    First side to use a naughty word loses?

  • James David Chapman 5 July 2017, 10:27 am

    I’ve no problems with swearing, however swearing at people is abusive. I’m against abuse in science, advocacy and in general.

    Dr Tuller, Prof Racaniello, Prof Lubet, do you support or are you against, verbal abuse in M.E advocacy & research?

    James/.
    @batteredoldbook (Twitter)

  • Valentijn 5 July 2017, 3:14 pm

    Swearing, even if it is actually “at” someone, is not abuse. But it is a lack of respect, and an expression of outrage. Both are warranted.

  • James David Chapman 5 July 2017, 4:02 pm

    Would you think it okay to swear at me?

  • James David Chapman 5 July 2017, 5:48 pm

    Dear Profs. Lubet & Racaniello & Dr Tuller,

    When Professor Coyne tells someone to f*ck themselves, or takes time out of his day to call me an assh*le I’m going to think differently about M.E advocacy as a direct result.

    And when M.E advocates come to me and tell me words to the effect of “medicine deserves it” I worry about their ability to self-moderate. When M.E advocates tell me the targets of abusive language should “toughen up” or seek therapy my opinion of them changes.

    Likewise when Dr Tuller announces he’s not above yelling “f*ck you” and tearing up studies, I’m going to reassess what I think of his professionalism and where he is leading M.E patients.

    And when I fairly ask Prof Racaniello would he support Dr Tuller saying “f*ck you” to researchers and I get no reply, naturally, I am going to reassess what I think of Virology blog.

    Previously, I highlighted three criticisms Professor Lubet made of Prof Sharpe’s behaviour and showed that they could each apply to the behaviour of well-known M.E advocates.

    I have not experienced Lubet’s “academic discourse that maintains standards of civility” within M.E advocacy. I’ve witnessed and experienced repeated name-calling, obstruction and a chilling silence whenever M.E advocates’ behaviour is questioned and whenever I have reported harm.

    Please, help repair this glaring weakness. Come out strongly against abusive behaviour in M.E advocacy:

    Dr Tuller, Prof Racaniello, Prof Lubet, do you support or are you against, verbal abuse in M.E advocacy & research?

    James/.
    @batteredoldbook (Twitter).

  • Valentijn 6 July 2017, 3:41 am

    Your question is misleading. The behavior you describe is not abusive, so it’s deceptive to suggest that failing to condemn it is the same as supporting abusing behavior. You also seem to think that being in favor of polite scientific discourse is some situations means that other forms of advocacy cannot be engaged in in other situations.

    Additionally, your conflation of individual instances of what you perceive to be abuse with the entirety of ME advocacy would be the very definition of prejudice. The only person responsible for what Coyne says is Coyne himself, and the same goes for Tuller. No one else can be required to answer for them.

    But I think your overall goal here is to discredit ME advocacy and activism in general. A naughty word or two (not aimed at anyone in particular) and the destruction of a print-out are simply not abusive. And Coyne swearing at someone that got under his skin (while you withhold the context) is not actually part of his ME advocacy, but rather his personal behavior, which people, even advocates, are entitled to have.

    Hence it would seem your interest merely lies in silencing opposition to bad science and bad practices which are actively harming ME patients. While it might be nice to think polite discourse is sufficient, patients have been trying that for decades and simply been ignored – and were still getting smeared as abusive militants for their troubles. Advocacy should be loud, and it should be obnoxious. Polite gets ignored.

  • Valentijn 6 July 2017, 3:42 am

    It would be rude – but not abusive.

  • James David Chapman 6 July 2017, 9:34 am

    I have very clearly directed this message to Steven Lubet, David Tuller and Vincent Racaniello. If they want to use some of your arguments I will address them, but I am still waiting for assurance from you in another thread that you will not swear at me during a discussion.

  • James David Chapman 6 July 2017, 9:35 am

    Within discussions about M.E research and advocacy would you think it okay to swear at me?

  • Valentijn 6 July 2017, 10:42 am

    I frankly don’t see the relevance between your question and the behavior you’re upset about.

  • James David Chapman 6 July 2017, 11:16 am

    We are talking about M.E patients/advocates swearing at others during discussions about M.E. I am in favour of self-moderation and civil debate, you’ve suggest outrage justifies swearing at people.

    Clearly, I am concerned therefore that during our debate you will think it okay to swear at me. I don’t want to assume so I am asking you directly:

    Within discussions about M.E research and advocacy would you think it okay to swear at me?

  • Jan Wade 6 July 2017, 12:59 pm

    Everything about this article is everything wrong about ME advocacy. People like this author, and all those who misguidedly threw in with the demented March For Science (an oxymoron), provides the perfect foil for Wessely, Sharpe, White, Crawley, et al., to quadruple down on their exploitation of ME patients. With the repeated publications of articles/authors such as this, evidence that ME advocacy has gone off the rails abounds. Even after science and a U.K. Tribunal handed us one win after the next, ME advocacy has turned around and is willfully shooting itself in the foot. This is a sad, sad state of affairs, and we will all pay dearly for the travesty that ME advocacy has become.

  • deboruth 11 July 2017, 12:22 am

    Excellent point — one ought to begin making the point to outsiders that CBT and GET is analagous to conversion therapy but still fiercely and widely forced on people.

  • Michael Dyson 12 July 2017, 6:35 am

    Steven Lubet is doing great work for patients with M.E. and I thank him for it. But it is a pity that he introduces a gratuitous element to his article in simply assuming that homosexuality is not a mental disorder. Homosexuality is manifestly contrary to nature in that it is a reproductively invalid behaviour and associated with high disease risks.

    It is Steven Lubet’s opinion that homosexuality is not a mental disorder, and that opinion is not necessarily shared by all those who agree with his position on ME/CFS and the PACE trial. Nor is anyone obliged to share his opinion regarding homosexuality. I would rather he had put a qualifier in his article to this effect.

  • James David Chapman 12 July 2017, 9:22 am

    Prof Lubet’s point wasn’t so much about his opinion but about the fact that U.S psychiatry no longer lists homosexuality as a mental disorder, and that protest helped to bring this about.

  • Michael Dyson 12 July 2017, 10:07 am

    Yes I accept that. But he describes the attempt to normalise homosexuality as being “pro-humanity” which is a controversial statement, and in my opinion there was no need to risk conflating ‘ME/CFS rights’ with ‘gay rights’. At least he could have made the distinction clearer. They are different issues.