Carly Maryhew’s Open letter to TEDxBristol regarding Esther Crawley’s “Disrupting Your View of ME” presentation

Carly Maryhew’s recent open letter to TEDxBristol concerning the failure of Esther Crawley’s recent talk to adhere  to TEDx’s explicit content guidelines is a gem, well worth a read by a general audience.

CaptureAt one level, her letter is a contribution to the ongoing debate about just how infrequently TEDx talks live up to the claim of “Only good science.” We need to amplify and broaden this conversation because the noble concept of a TEDx talks desperately needs rescuing from what TEDx talks have become.

At another level, the letter is a searing indictment of Esther Crawley’s”Disrupting Your View of ME” talk with blow-by-blow pitting of what Crawley said versus the explicit TEDx guidelines.  That Carly Maryhew was a practicing lawyer before she became ill with myalgic encephalomyelitis/chronic fatigue syndrome is apparent.

I had to ask Carly, though, where did the great flashes of activist citizen scientist apparent in the letter come from? After all, this would be an excellent conference presentation about pseudoscience and politics being passed to consumers as science. Carly’s reply something that I commonly hear from the new wave of patient actors/citizen scientist:

“It’s out of necessity to analyze scientific research and related content, mostly from interacting with other patients.”

As Carly’s open letter documents, it’s that very achievement of the patient community that the Esther Crawley is attempted to deny and smear with character assassination and artistic license.

More than that, she argues that one unblinded trial with switched, subjective outcomes does not make a quack treatment evidence-based.

We should look forward to receiving the courtesy of a response from TEDxBristol and gently nudge them if one is not forthcoming. Dissatisfied viewers of the Crawley talk keep posting critical comments at the TEDxBristol, but commentary keeps getting hidden from view from all but those who posted. I recommend anyone who had their comments hidden, submit them as comments moderation at this blog site.

Comments have also been disabled at the official video of Esther Crawley’s talk.

Carly Maryhew’s Open Letter 

15 December 2017

To whom it may concern at TEDxBristol:

As an ME patient, it was with great interest that I watched Professor Esther Crawley’s TEDxBristol talk “Disrupting Your View of ME” on 2 November 2017. Unfortunately, the contents of that talk did not seem to comply with the standards of TEDx, as described in the TEDx Content Guidelines.[1] While that might be sufficient to result in the video merely being displayed with a warning regarding the contents, there are other portions of Professor Crawley’s presentation which are highly offensive for reasons which may not be readily apparent, discussed below. Accordingly, I request that the entire video not be posted by TEDxBristol, either on its own site or on YouTube.

“Guideline 4: Only Good Science”

The most obvious concern is that in much of Professor Crawley’s TEDx talk she is referring to her recently published trial, Specialist Medical Intervention and Lightning Evaluation,[2] abbreviated as SMILE. The “Lightning” in the name of the trial refers to the Lightning Process (LP),[3] a specific form of neuro-linguistic processing (NLP)[4] which was developed and commercialized by Phil Parker.

“Claims made using scientific language should:

  • Be testable experimentally.
  • Be based on theories that are also considered credible by experts in the field.

Claims made using scientific language should not:

  • Be so obscure or mysterious as to be untestable
  • Be based on experiments that can not be reproduced by others
  • Be considered ridiculous by credible scientists in the field.”

Contrary to TEDx guidelines, her claims of success based on the SMILE trial are not testable experimentally due to a failure of her paper to describe the process used by the Lightning Process. This information is also not commonly available online, except via patient accounts, due to Phil Parker requiring that customers not discuss it.[5] LP and the NLP methodology which it is based on are both widely considered debunked pseudoscience by the mainstream medical community.[6]

“Claims made using scientific language should:

  • Be backed up by experiments that have generated enough data to convince other experts of its legitimacy.
  • Show clear respect for the scientific method and scientific thinking generally.

Claims made using scientific language should not:

  • Be based on data that do not convincingly corroborate the experimenter’s theoretical claims.”

There has been no evidence to establish the legitimacy of LP or NLP for any disorder, and Phil Parker has been specifically forbidden to promote LP as a cure for ME/CFS.[7] Other studies conducted into NLP have shown it to be ineffective for other disorders.[8] Indeed, despite Professor Crawley’s claims of success, the methodological flaws in her work mean that her own study has failed to demonstrate effectiveness, due to relying solely on subjective outcomes combined with a lack of blinding or adequate control group.

Such subjective outcome measurements are especially problematic when the treatment itself demands that the customers proclaim it is effective to make it work, as happens in the case of LP,[9] and may be compounded when the subjects are children who may be especially vulnerable to such pressures. As a demonstration of the pressures placed upon children by LP to be accountable for curing themselves, children have been known to attempt suicide when LP fails to work.[10]

“Claims made using scientific language should:

  • Not fly in the face of the broad existing body of scientific knowledge.”

It should be obvious that it flies in the face of reason (and a large body of biomedical research) to claim that any disease or other condition can be successfully treated by teaching children to say “STOP” and make a ritualistic movement.[11] Various patient accounts indicate that they are told symptoms will go away if they stop “doing” their illness, by suppressing negative thoughts to enable them to “grow new neural pathways.”[12]

Professor Crawley’s Accusations

Although I could not find a TEDx guideline regarding making untrue statements on the stage, presumably that is because it is a problem which is so obvious that it shouldn’t need a guideline. Yet it did happen during Professor Crawley’s TEDxBristol talk, much the same as it happened in other recent talks she has given to medical personnel in various venues.[13] At approximately 9:05-9:40 during her TEDxBristol talk, a slide is displayed with a threat written in the style of a stereotypical ransom note. Professor Crawley says “This is an email that I got a few years ago. It was used on the front cover of the Sunday Times, to discuss the research environment for chronic fatigue syndrome. I still laugh at the idea that someone was going to cut my balls off (laughter from audience). Does make you wonder.”

However, this note was not emailed (at least not as a threat) to her. It was an artistic compilation made by an employee of the Sunday Times to sensationalize unsubstantiated threats which another controversial researcher claimed he had received via phone calls.[14] In that article, there is no claim that she received such a threat, though she did claim to receive an email calling her an evil bastard.[15] A recent correspondence from Bristol University, in response to a Freedom of Information Act request from the ME children’s charity Tymes Trust, indicated that they had “received no official reports of harassment of University staff by a third party” from 2010-2017.[16]

It is possible that threats were received by Professor Crawley, albeit not reported, and any such harassment and threats would be universally condemned by the ME/CFS community. But any such harassment categorically did not consist of the letter which Professor Crawley displayed during her TEDx talk, and it is grossly inappropriate for it to have been used in that context, especially with joking that someone meant to cut off her balls, when she knew very well that such threats had never been addressed to her. I cannot claim to know what would motivate someone to misrepresent such a vile threat, but these accusations typically surface when a controversial researcher is facing criticism from patients, doctors, researchers, and other academics due to making absurd claims based on research using shockingly poor methodology,[17] such as was used in the SMILE trial to generate positive results for a therapy which is indisputable pseudoscience.[18]

Similarly, opponents of their work are frequently compared to climate denialists, animal rights activists, and anti-vaxxers,[19] in an attempt to discredit us. The claims which Professor Crawley made in her TEDx talk regarding “a few people and a few organizations” trying to stop their research into ME/CFS is only partly accurate. Patients and patient organizations are indeed trying to stop them from performing unethical and shoddy research which diverts valuable funds from serious researchers who use rigorous methodology to test clear hypotheses. But these are a large majority of ME/CFS patients and nearly every patient organisation,[20] joined by ME/CFS experts, biomedical ME/CFS researchers, and academics based in universities around the world.[21] Our opposition to their research practices and influence does not take the form of threats or harassment, but rather consists of parliamentary questions, Freedom of Information Act requests, petitions, blogs, social media commentary, letters published in scientific journals, and published scientific articles.[22]

Accordingly, I hope that you can understand why patients and their supporters find Professor Crawley’s talk to be so upsetting. Not only is she promoting blatant pseudoscience and making false accusations against the patients who oppose her work, she goes so far as to brazenly suggest that she should be our voice. As at ME/CFS patient, my response is that we must be allowed to speak for ourselves, and that those of us who are too ill to speak should be spoken for by our caregivers and other loved ones.[23] All Professor Crawley needs to do is to stop attempting to silence us.

Additionally, I believe that children with ME/CFS can speak for themselves and be heard when they want to, and even they recognise the SMILE trial’s LP nonsense for what it is. In the words of 10 year old patient Shannon Tiday: “They say ‘raise your hand out and say stop?’ Don’t you think I tried that? What is wrong with these people? Well people’s people, you can’t stop them. And that’s not our fault, so don’t think it’s our fault!”[24]

I would very much appreciate TEDxBristol’s assistance in this by denying Professor Crawley a platform for dangerous pseudoscience and baseless accusations against the ME/CFS patient community.

Thank you,

-Carly Maryhew

A full set of references for the bracketed numbers are available here 

 

 

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2 thoughts on “Carly Maryhew’s Open letter to TEDxBristol regarding Esther Crawley’s “Disrupting Your View of ME” presentation

  1. It’s a brilliant letter, and great that you make it available here.

    And “evidence based” is a much abused term. The veracity of the evidence is what counts of course, else it is not evidence at all.

    Like

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