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 

 

 

Parents should have been warned about unprofessional providers in Esther Crawley’s SMILE trial

The providers of Lightning Process in the SMILE trial were not credentialed health professionals and are not bound by ethical codes.

giphyEsther Crawley’s overdue publication of results from the SMILE trial  deserves close scrutiny for lots of reasons. But especially for what is said about the supervision and qualifications of Lightning Process practitioners who delivered the treatment.

Readers can easily gloss over a seemingly straightforward description of these practitioners in the paper. Yet, a little probing and checking of sources should cause some alarm among the parents who agreed to their children participating in the trial.

The details are alarming enough to cause worry about participating in any clinical trial involving Esther Crawley. She does not look after the safety and rights of children in her care.

This trial was approved by a number of committees at Bristol University. Assured by those well-publicized approvals, parents undoubtedly assumed that their children were protected from risks and needless exposure to quack treatments or providers not bound by enforceable ethical codes. The children did not have these protections, which should give pause to anyone contemplating allowing their children to participate in a trial regulated by Bristol University.

What was said in the published paper

LP practitioners have completed a diploma through the Phil Parker Training Institute in Neurolinguistic Programming, Life Coaching and Clinical Hypnotherapy. This diploma is examined through written and practical examinations and is accredited by the British Institute of Hypnotherapy and NLP. Following the diploma, LP practitioners undertake a further course to learn the tools and delivery required for the LP after which they must pass both a practical and written examination. Practitioners undertake supervision and continuous professional development in order to further develop their skills and knowledge. They are regulated by the register of LP practitioners, adhere to a code of conduct and there is a Professional Conduct Committee that oversees complaints and professional practice issues.

Let’s isolate and probe some of these statements.

LP practitioners have completed a diploma through the Phil Parker Training Institute in Neurolinguistic Programming, Life Coaching and Clinical Hypnotherapy.

advanced practitionerComment: This is does not represent anything approaching a degree from an accredited university or training institute. Phil Parker has been sanctioned by the UK Advertising Standards Authority for false claims about treating and even curing complex medical conditions. Yet the SMILE trial presented the Lighting Process as a treatment to the parents and children.

It would be fascinating to debrief the parents to discover what they assumed in consenting to their children’s participating in the trial. Did they think the children were being treated? Were they informed that the ASA forbade billing Lightning Process as a treatment? That the treatment providers were not chartered or qualified medical or mental health providers?

Neurolinguistic Programming has been widely discredited as quackery and is no longer is discussed in the scientific or clinical literatures.

Life Coaching is so vague a term as to be meaningless. There is no regulation or consistent specification of what is done or forbidden to be done in life coaching.

Clinical Hypnotherapy is not a restricted, independently recognized, nor chartered class of provider. Anyone can call themselves a clinical hypnotherapist. Phil Parker’s institute issues meaningless certificates that be hung on providers’ walls to confuse consumers.

This diploma is examined through written and practical examinations and is accredited by the British Institute of Hypnotherapy and NLP.

 Comment: Sounds impressive, huh? The ‘written and practical examinations’ involve showing adeptness in delivering a quack treatment that involves making false claims and offering pseudoscientific explanations to patients- messages defined by those who sell the training products.  Ability to meet these criteria involves taking trademarked training courses in quackery. Any deficiencies in knowledge or practice that examiners perceive are remedied by taking more courses. Essentially, this is a pyramid scheme from which Phil Parker benefits financially.

Reassured that providers are accredited by “British Institute of Hypnotherapy and NLP?” Go visit the website and you can readily see that it is an extension of Phil Parker’s marketing effort, not something independent or otherwise chartered or regulated. The site offers courses in referrals to people who have completed courses.

At the website a rotating variety of pseudoscientific explanations are provided with claims of dramatic effects of hypnosis that are at odds with the evidence. Visitors are led to believe that hypnotherapy is effective for reducing blood pressure and stopping smoking:

Hypnotherapy can help you kick the habit of smoking into touch for good.

Compare that to what is said by the Cochrane Collaboration:

Does hypnotherapy help people who are trying to stop smoking?

We have not shown that hypnotherapy has a greater effect on six-month quit rates than other interventions or no treatment. There is not enough evidence to show whether hypnotherapy could be as effective as counselling treatment. The effects of hypnotherapy on smoking cessation claimed by uncontrolled studies were not confirmed by analysis of randomized controlled trials.

The site also falsely claims that hypnotherapy can reduce blood pressure. The site is basically an advertisement for exaggerated claims about hypnosis backed by pseudoscientific explanations of how it works.

Hypnotherapists now understood neurology and physiology of using hypnosis and have the evidence of neurosciences support this understanding.

not psychologicalNonsense. This British Institute of Hypnotherapy and NLP is set up and run by a guy who claims neuroscience, osteopathy and neurolingustic programming explain the effects of the Lightning  Process, which are claimed to be physiological, not psychological. Who believes these additional claims about hypnosis are valid?

Consumer beware.

Practitioners undertake supervision and continuous professional development in order to further develop their skills and knowledge.

But the supervision is in use of a commercial product with a pseudoscientific explanation. So, apparently practitioners are supervised in their willingness and ability to adhere to the scripts they have received as part of products they have purchased. The “continuous professional development” is taking a steady stream of Phil Parker’s training courses. Because his materials are trademarked, no one who is not authorized by Parker to sell his merchandise.

They are regulated by the register of LP practitioners, adhere to a code of conduct and there is a Professional Conduct Committee that oversees complaints and professional practice issues.

There is a financial conflict of interest in Phil Parker offering courses and training and what the ASA has said cannot be described as treatment and then setting up a professional conduct committee is tied directly to his products.

What should parents be able to expect in bringing their children to a recognized, regulated healthcare site, like the NHS? The treatment providers should be professionals licensed by a governmental or independent body separate from any marketing of training. If not fully licensed or regulated professionals, they should be supervised by professionals, such as medical or mental health clinicians.

The class of providers should also be licensed or chartered so that sanctions with legal consequences can be applied for misconduct or unethical behavior. Providers working with children should be held to some ethical standards in terms of the safety and rights of both children and their parents.

None of these features are present in the treatment provided in the SMILE trial.

Christine Fenton, a retired Deputy Head of two high schools in the UK notes she was responsible for child protection in those roles. She expressed this concern about the basic conflict of Lightning Process and tenets of childhood protection:

LP participants are directed to not talk to others about it – keep secrets – to report positively regardless of their internal view is appalling to me. Child Protection has a key tenet ‘secrets are not ok’ – if an adult tells a youngster to keep a secret it is a form of control & creates an environment in which abuse can occur more easily.

Teachers, like other professionals coming in contact with children are required to take courses about child protective services and the duty to report abuse. They are held legally responsible for violation of the associated rules. However, legally, providers of the lightning process are only ordinary citizens, not professionals and are not held responsible in this manner.

In obtaining approval for the conduct of the SMILE trial from Bristol University, Pediatrician Esther Crawley claimed that sessions of the writing process were taped and that she had responsibility for reviewing the tapes. It strains credibility to claim that she actually listened to all the tapes from the study.

But what does it mean for a physician to supervise a quack treatment provided by quack providers who are not being allowed to call what they do treatment? How does Crawley react when physically ill, impaired children are instructed to deny their fatigue and pain to authority figures such as teachers and parents?

Truly mind-boggling to consider.

Bristol Uni refuses to disclose how much money paid for quack therapy in SMILE clinical trial

video-screenshot-parkerThe University of Bristol has refused to provide basic information concerning how much Phil Parker, a proponent of a quack therapy, was paid for training and treatment provided to patients provided in a clinical trial conducted by Professor Dr. Esther Crawley. I reproduce the response to the Freedom of Information Request below.

  • I previously blogged  about Esther Crawley’s MAGENTA trial of graded exercise for chronic fatigue syndrome in children and adolescents. I raised numerous concerns about the risk and benefits of parents enrolling their children in this trial.
  • I pointed to Crawley’s previous ignoring of the basic rights of children enrolled in another trial, the SMILE trial.
  • I raised issues about the financial transactions between Crawley and Phil Parker, a proponent of the quack Lightning Process treatment. In response to consumer complaints, Phil Parker had been disciplined by the UK Advertising Standards Authority and forced to remove claims about his ability to treat and even cure chronic fatigue syndrome from his website.
  •  Aside from a scientifically unwarranted clinical trial of a quack treatment, Esther Crawley failed in her responsibility to parents and the children participating in the SMILE trial by not publishing the results in a timely fashion. There was no basis for promising any clinical benefit to the children, and so the value of participating in the trial was confined to the contribution to science from any resulting peer-reviewed publications that presented results. Only unselected and therefore unscientific testimonials were published. [See my blog post for further details.

explict-parker-ad

The Freedom Information Request reproduced below was intended to obtain information about the money flowing to Parker and also any plans to publish the SMILE trial data.

——– Forwarded Message ——–

Subject: Re: SMILE study
Date: Mon, 3 Oct 2016 12:08:19 +0100
From: University of Bristol FOI mailbox <freedom-information@bristol.ac.uk>
To: John Peters <johnpetpub@gmail.com>

Dear Mr Peters

Thank you for your recent Freedom of Information request, as below:

This request concerns this study:

The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study)  

http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-415

The Principal Investigator is listed as Esther Crawley and I am writing to you as the presumed responsible public authority.

  1. Please give the total cost of the study.
  1. In the trial protocol (1), it is stated: ‘Families currently pay approximately £620 to attend the Lightning Process course.’ Please say how much was paid for children in the study to attend ‘Lightning Process’ courses. If possible, please give the cost per child attending and the overall cost.
  1. Please say if any discount or special deal was arranged with the providers of ‘Lightning Process’ courses. If there was a discount or special deal negotiated, please say what it was.
  1. It is said that Phil Parker, the creator of this intervention, receives commission on each course undertaken. Please state whether you are aware of any commission paid for any of the courses provided as part of the study. If you are aware, please say what commission was paid. Please also state if there was any discount or special deal done with Phil Parker regarding his commission, and if so what it was.

In response to parts 1-3, this information is held by the University but is exempt from disclosure under section 22(1) of the Freedom of Information Act as it is information intended for future publication. Further information about the SMILE and documents containing the information you have requested are due for publication but there is no fixed date for publication at present.

If it assists, the study protocol is in the public domain and available at: https://www.ncbi.nlm.nih.gov/pubmed/24370208

The University does not hold any recorded information in relation to part 4.

Review procedure

If you are not satisfied with the University’s response to your request you may ask the University to review the response by writing to:

Director of Legal Services

Secretary’s Office

University of Bristol

Senate House

Tyndall Avenue

Bristol BS8 1TH

Email: freedom-information@bristol.ac.uk

enclosing a copy of your original request and explaining why you are requesting a review. The full review procedure is set out at:  http://www.bristol.ac.uk/secretary/foi/review-procedure/

Your request for internal review should be submitted to us within 40 working days of receipt of a response.

If you are not satisfied with the outcome of the internal review you may also contact the Information Commissioner’s Office at:

Wycliffe House

Water Lane

Wilmslow

Cheshire

SK9 5AF

www.ico.gov.uk

Best wishes

Freedom of Information Team

University of Bristol

 

Is mindfulness training the new “gateway drug” to quack breast cancer treatments?

Integrative oncology is but a smokescreen for quacks – Edzard Ernst

Yoga-for-Cancer-Care-1024x953Has mindfulness-based stress reduction (MBSR) treatment become the equivalent of a “gateway drug” in cancer patients who go on to access a full range of unproven and disproven cancer treatments? I discuss this possibility in this edition of Quick Thoughts.

Here’s my argument:

  • Mindfulness-based stress reduction (MBSR) is widely promoted as a nonpharmacological “wonder drug” changing the brain and improving immune function.
  • Belief in the power of MBSR over cancer has replaced discredited beliefs about psychotherapy and support groups bringing the power of the mind to bear in “fighting” cancer.
  • MBSR groups are now offered through newly renamed “integrative cancer centers” which offer a full range of unproven and discredited treatments.
  • The seeming scientific status of health claims of MBSR lends support to the claims of integrative cancer centers that they have a modern scientific basis for treatments developed on the basis of traditional Chinese medicine.
  • Patients’ acceptance of exaggerated claims about the science behind MBSR leads to false confidence in other claims of integrative cancer centers that unproven treatments are actually evidence-based.
  • Once engaged at integrative cancer centers, women with advanced breast cancer are particularly likely receive a full range of services, which can consume time and money, but also delay or become alternatives to proven treatments.
  • MBSR can thus be a nonpharmacological “gateway drug” into an alternative pathway of cancer care in which unproven treatments are adopted by patients and even come to replace conventional, proven medicine.

Who can remain skeptical about the powers of MBSR?

It is difficult for even educated nonspecialists to evaluate claims of seeming experts that MBSR uniquely changes the brain and improves the immune system.

Studies claiming to correlate changes in brain functioning and structure with practicing MBSR get lots of uncritical media attention. When the studies are given a closer look, they are typically too small to warrant the strength of the claims that they are making, often don’t replicate, and don’t establish that any correlates are specific to MBSR, rather than also found with other experiences. Consumers need to keep in mind that all experiences change the brain, and that finding such correlates usually have unclear significance, even when they can be replicated.

Claims that MBSR influences the immune system come from a body of particularly weak and inconsistent findings with unknown, if any medical significance. I’ll be devoting a future edition of Mind the Brain to a skeptical look at the literature concerning effects of MBSR on the immune functioning of cancer patients. Suffice to say for now, these same claims were until recently made for support and psychotherapy groups. They were discredited not only because of a lack of consistent effects on immune functioning, but a lack of evidence that such groups affect the course or outcome of cancer. Effects of support groups on the immune system had been a presumed mediator, but it is no use pursuing a mediator of an effect if there is no effect to explain.

It is unlikely that endocrinologists or oncologists would be impressed by the findings of these studies of the MBSR or support groups. They would likely be especially skeptical of the plausibility of the medical claims that are being made. The role of the immune system in cancer is poorly understood and complex, but far beyond the simplistic models taken for granted in psychoneuroimunological  studies.

 The rise and fall of psychotherapy and support groups as a means of mind control over cancer

The claim that psychotherapy and support groups could improve the outcome of cancer garnered excitement and scientific credibility with a small 1989 study in The Lancet by David Speigel. I have critiqued that study thoroughly elsewhere.  I showed that the study was not designed nor powered for observing an effect on survival and claims made about its results depend on statistical flaws.  Although Spiegel has persisted in his claims, no one could replicate his earlier study, in larger, methodologically superior studies – not even Spiegel. There is a lack of evidence that psychotherapy or support groups can extend the lives or influence the course of cancer.

Perhaps the absence of evidence for an effect of psychotherapy and support groups does not establish the absence of an effect, but the evidence is quite consistent and there is a lack of evidence supporting any plausible mechanism. Large-scale epidemiologic studies suggest that any apparent association between psychological factors and incidence and outcome of cancer is small enough to be within the range to be attributable to uncontrolled confounds and certainly not of clinical significance.

Support groups can be recommended to cancer patients for the opportunity to express their feelings, receive validation and support from others, and be of help to others. They are valued and satisfying experiences for many patients. However, a key difficulty that support groups reduce distress demonstrating in clinical trials is that most patients attending them do not have clinically significant distress . Floor effects are consistently observed, whereby the modest elevations of psychological distress of the bulk of patients recruited to clinical trials preclude there been any demonstration that support groups reduce psychological distress. There has been a move in the psycho-oncology  literature to set clinically significant distress one of the entry criteria for enrollment in clinical trials of psychosocial interventions. However, it takes considerable effort to recruit an adequate sample size because many patients who have appropriate levels of psychological distress are already receiving services and not interested in obtaining any more more. Others want to deal on their with what they understand as normal reaction. Setting heightened distress as a requirement for enrolling in a clinical trial of psychological interventions also means that the resulting sample will not be representative of the larger population of cancer patients from which they were drawn.

At the height of enthusiasm for medical benefits of support groups, many cancer patients attended them because they believed that they were getting medical, as well as psychological benefits. Eventually the American Cancer Society had to issue a statement about the lack of evidence of any medical benefits.

The research is clear that support groups can affect quality of life, but the available scientific evidence does not support the idea that support groups or other forms of mental health therapy can by themselves help people with cancer live longer.

 Support groups are out of fashion, MBSR is in

 MBSR is tremendously popular in non-patient populations. When informed of a cancer diagnosis, patients may view MBSR as a tool with which they already have experience or are familiar. Furthermore, surveys find that cancer patients believe that stress is an important cause of both the onset of cancer and recurrence. Thus, MBSR is readily acceptable as a familiar tool with added benefits in overcoming cancer as a physical disease, not just a psychological threat. The problem is, of course, the lack of evidence for such role of psychological factors, as well as the implausibility of mechanisms by which psychological intervention might conceivably influence disease processes.

 Cancer center ads more emotional than informative 

 As seen in billboard and TV advertising campaigns, providing care for cancer is a lucrative and competitive business even among non-for-profit cancer centers. There is seldom evidence for the claims made in advertising campaigns that particular cancer center gets better outcomes. But advertisements typically back up the claims with carefully chosen emotional patient testimonials about the outcomes they received.

Reputations for providing better care than rival centers attracts not only patient volume, but donor contributions. Most large cancer centers have fund raising departments ,  which routinely document the wealth of patients and the extent of effort that would be justified in obtaining a donation. I once worked at cancer center that had a large yacht bequeathed to it, which was kept and used to entertain potential donors of known wealth. There was also a fund for female oncologists to buy expensive fashionable clothes in order to make a pitch for funds at charitable events.

Cancer centers have established fees with hefty administrative costs by which donors can attach their name to the bench in the waiting area for tens of thousands of dollars or millions for naming a whole cancer center.

Effective marketing requires the cancer centers advertise that they treat the whole person, not just the tumor. Wealthy donors often specify that particular amenities be available. For instance, at the cancer center where I worked, a donor had insisted that friendly greeters welcome arriving cancer patients, just had been done for her at a world-renowned spa where she went for recuperation.

do you have

 A name change: from complementary and alternative medicine to integrative medicine centers

better respectful insolenceSuch amenities and services requested by donors become available for all patients and can improve their treatment experiences. But in the past decade, many cancer centers found competitive advantage in offering a full range of unproven and disproven alternative treatments. Sometimes donors specifically requested that such services be established. The availability of complementary alternative medicine (CAM) became a selling point. But then, a name change was required. As the pseudonymous cancer surgeon blogger Orac noted:

 

It was not long before the problem with the term CAM became apparent. It had the word “complementary” in it. The implication of that word, of course, is that what they were doing was still somehow not real medicine. It was complementary to real medicine, the icing on the cake, if you will. Real medicine could do without it, and having that implication in the very name that their evolving specialty had taken on was offensive to the quacks.

So they changed it.

Thus was born “integrative medicine.”

 Breast Cancer Integrative Oncology Care and Its Costs

 A recent article in Integrative Cancer Therapies documented the cost of integrative cancer care and contained some surprising revelations:

 Standish LJ, Dowd F, Sweet E, Dale L, Weaver M, Osborne B, Andersen MR. Breast Cancer Integrative Oncology Care and Its Costs. Integrative Cancer Therapies. 2016 May 26:1534735416649034.

More and more people diagnosed with cancer are choosing to supplement their conventional oncology treatment with complementary care provided by licensed complementary and alternative medicine (CAM) providers, including doctors of osteopathy, doctors of traditional Chinese medicine (TCM), and oncology board certified naturopathic oncologists (Fellows of the American Board of Naturopathic Oncology or FABNOs; http://www.fabno.org/), some of whom are co-licensed as acupuncturists. This growing field of medicine is increasingly being referred to as integrative oncology (IO). ND, FABNO consultations and some procedures are reimbursed by medical insurance companies in some states in the United States.

The article reported results of a study of 324 women who

Sought care at 1 of 6 naturopathic oncology clinics in Washington State were asked to enroll in a prospective 5 year observational outcomes study.

The findings:

More than 72 oral or topical, nutritional, botanical, fungal and bacterial-based medicines were prescribed to the cohort during their first year of IO care. Trametes versicolor was prescribed to 63% of the women. Mind-body therapy was recommended to 45% of patients, and 49% received acupuncture. Also, 26% were prescribed injectable therapy, including mistletoe, vitamin B complex (12%), IV ascorbate (12%), IV artesunate (7%), and IV nutrition and hydration (4%). Costs ranged from $1594/year for early-stage breast cancer to $6200/year for stage 4 breast cancer patients. Of the total amount billed for IO care for 1 year for breast cancer patients, 21% was out-of-pocket.

However:

A comprehensive protocol for stage 4 breast cancer includes IV nutrients and botanicals plus oral and topical natural medicine and costs approximately $32 000/year.

The article describes these services as all “evidence-based” but if they were evidence-based, they would be conventional, not complementary and alternative medicine.

 Is MBSR the gateway drug to quack treatments?

 Confrontation with a diagnosis of cancer, particularly when it is advanced and life-threatening, often leads to a search for information that inevitably includes unproven treatments. Patient’s susceptibility to misleading information is increased by the offering of unproven treatments and their labeling as “evidence-based” by prestigious cancer centers associated with medical schools lends credibility to unwarranted claims.

Almost half of the patients going to integrative medicine centers receive mind-body therapies, and undoubtedly MBSR figures prominently. MBSR is familiar, widely promoted as evidence-based, and use of it is consistent with patient believes about the role of stress in cancer. The acceptance of unwarranted claims of MBSR can be a step on the path of accepting claims of unproven and quack treatments as being evidence-based. In that sense, MBSR is the gateway drug for cancer patients to quack treatment.

 What is our responsibility to patients?

 There are always ethical issues with exaggerating the effectiveness of treatments or their evidence base for particular claims. But with vulnerable and often desperate cancer patients, ethical responsibilities become more pronounced. It’s incumbent on promoters of MBSR as a cure for all that ails should be clear about something: that effects of MBSR on the immune system and the course and outcome of cancer are not established. Further, there is no plausible biological mechanisms by which such effects would occur. Just as acknowledgment is now being done for support groups, it should be done for MBSR, particularly because of its likely place as a step on the way to unproven and quack treatments.

See also

skeptic north