Wearing a Forced Smile

Time after time over the years, people with M.E. (myalgic encephalomyelitis) have had to put up with hearing total bunkum about their condition, but rarely does the ‘science’ get as flaky as last Thursday’s announcements on the ‘Smile’ Trial, a study which purported to assess the efficacy of the ‘Lightning Process’ for children with M.E. This process (known as LP for short) could be described as a cross between neuro-linguistic programming (NLP) and amateur dramatics, or (to put it less kindly though perhaps more accurately) as a form of brainwashing.

The precise nature of LP is wreathed in secrecy and participants are told not to disclose the details. However, according to anecdotal reports, patients undergoing the process are told that they are responsible for their illness and are free to choose to live their life without it if they wish. They are told they can achieve this through LP but it will only work if they believe in it. Everything they think and say must be positive. They must tell everyone they are better. When they feel any symptoms or negative thoughts, they must stretch out their arms with the palms facing out and shout “Stop!” If the process doesn’t work, they’re doing something wrong: it is their fault if they’re still ill.

Can you guess what results this trial has achieved?

Well, the researchers reported that LP combined with standard medical care produced better results than standard medical care alone. If you look at how they assessed this, the outcome was scarcely surprising. In common with other similar trials assessing ‘psychological’ treatments for M.E. (including the controversial £5m publically funded PACE trial) it was unblinded and there was very little in terms of objective assessment of outcomes. The results were almost entirely assessed using self-completed questionnaires. So in other words what they did was to tell the children they were better and then ask them if they were better. Just in case this didn’t achieve the desired outcome, remember that the children had also been told that the process would only work if they believed in it and if they didn’t recover it would be their fault.

Remember too that these were children being questioned by adults in positions of perceived authority.

Now what was that answer again, children?

Apparently we are supposed to treat this extraordinary procedure as a piece of serious science. After all, we have the science editors at the BBC and the Guardian as our role models. As with the many previous papers from the PACE researchers and their colleagues, these so called professional journalists swallow the whole thing without so much as a grimace and repeat it all back just as they have been told it, like performing parrots. The source on which they rely to tell them what to think is the Science Media Centre, a shadowy organisation which purportedly exists to provide a balanced view of science but in fact appears to promote the agenda of vested interests: in this case those who have built careers on the backs of patients with M.E., promoting their unproven psychological theories, misdirecting patients and their families, and effectively diverting funds from much-needed biomedical research.

On top of all the nonsense they spouted in Thursday’s coverage about the trial itself, these ‘journalists’ have also been coached to repeat yet again the habitual misinformation about M.E. researchers being abused by patients, apparently to such an extent that most of them have left the field altogether. This simply isn’t true. While one or two psychiatrists have announced their retirement, at least one purportedly in fear of his life, this doesn’t seem to stop them continuing to write about M.E. or, in at least one case, issuing further papers on the subject. These accusations against patients reached their peak at the Freedom of Information Tribunal which released important data about the PACE Trial. The Tribunal ruled that the accusations had been greatly exaggerated. Apparently the sole piece of evidence produced for all the so-called threats was that one of the researchers had been heckled at a lecture.  In reality, while any abuse which may occur is regrettable, by far the bulk of what these researchers complain about is simply legitimate criticism about abysmal so-called ‘science’ such as the Smile trial.

Meanwhile, those scientists researching the biomedical roots of M.E., of whom there are many worldwide – though precious few in the UK where psychiatrists take most of the funding – get on extremely well with patients, who in many cases raise the money they need to do their work.

Though such research remains grossly underfunded, progress is slowly being made. As Prof Jose Montoya announced at a conference just last week, it is no longer true to say that this is a mystery illness. It is one whose pathogenesis is slowly being unveiled.

Only a small proportion of such progress is reported in the UK media. The Science Media Centre don’t tell the journalists about it and, it seems, they can’t be bothered to look for themselves.

To add to the misinformation: on BBC Radio Four’s Today programme (approx 7-50 am), lead Smile researcher Esther Crawley grossly misrepresented the patient support group the M.E. Association by claiming that they didn’t want M.E to be researched in children. In fact, their complaint was not against research for children with M.E. in general, but the Smile Trial in particular, which they considered to be unethical. I have to say that I agree with them. Children frame their view of the world at least partially according to what adults tell them, so for them to be told they are not ill, contrary to their own perceived experience and to what is now understood about the physical reality of this neuroimmune condition, appears to be a betrayal of their trust. Research evidence by VanNess et al, among others, strongly suggests that it is harmful for M.E. patients to ignore the way they feel and push themselves beyond their capability. This can bring about a long-term deterioration in their condition. Unlike adults, children have a good chance of making a full recovery if they are simply allowed to take the rest they need. To encourage them to ignore the way they feel, as does the lightning process, is therefore particularly unfortunate. It can push children who might otherwise have recovered into a lifetime of chronic illness.

This is not the only potential damage to children. Others have been driven into anxiety and depression under the pressure of being made to act as if they are well when they are not. Some have even attempted suicide under the strain of this.

The Guardian article reported that Esther Rantzen’s daughter Emily had been cured of M.E. by the Lightning Process: another piece of misinformation. It was reported some years ago that Emily actually had coeliac disease, not M.E., and she described the pressure of going for several years after her so called ‘recovery’ pretending she was well when she wasn’t:

“I’ve been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to ‘fake it till I feel it’. “

How many more children will be subjected to these various forms of harm following Thursday’s inaccurate coverage? And how long will it be till UK journalists start reporting M.E. responsibly?

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14 thoughts on “Wearing a Forced Smile

  1. Great commentary- well done! Charles was masterful in not allowing Stephanie Flanders to interrupt and redirect the agenda. We need to get EC’s contribution transcribed and checked verbatim as the next priority. I hope her words come back to bite her!

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    1. Thank you! Yes, Charles Shepherd did very well when he was given a limited right of reply by Today on Friday morning – especially as they apparently made him come (a considerable distance) into the studio at the crack of dawn! I’m not sure of the reason for the latter (somethng to do with the radio car not being available? – and yet we have to listen to people on lousy mobiles all the time on the radio, don’t we?… ) I can’t avoid the suspicion that they were punishing him for daring to correct their inaccuracies.

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    1. Thank you! Most of our doctors (and, sadly, journalists) do not serve us well over here, I’m afraid. Many years ago, Tony Blair spoke of the death of deference, but it seems to be alive and well as far as the medical profession is concerned. Few people will believe that Esther Crawley and her colleagues are getting away with such abysmal so-called research. After all, they’re doctors….

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  2. Definition, definition, definition. We must insist on accuracy!

    Note that Esther Crawley did not mention ME on R4. Her trial was purely into “Chronic Fatigue Syndrome”. Which definition did she use? How did she ensure that no participant had ME which would have been made worse by exertion, whether cognitive or physical, hence participation would have been dangerous and contra-indicated?

    A bit like Peter White who admitted in writing that the PACE Trial contained no participants with ME! I note however that that hasn’t stopped the psychosocial brigade purporting to apply it to people with ME.

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    1. Mea culpa. Of course you are right that we should really pay attention to the definition that was used in the trial but Crawley’s methods are so imprecise that it scarcely seems worth making the effort. You point out that she referred only to CFS on Radio 4, but in the actual paper she calls it CFS/ME, so who knows what she’s talking about. We should not of course, conflate ME with CFS, but Crawley does this all the time and indeed frequently conflates them with generic chronic fatigue. In this respect, she does not behave like a responsible researcher – yet in so many other respects you could say the same. The main contribution of her research to the field is simply to spread confusion. To focus on the use of definitions is valid enough, but it is a bit like coming across a child who is cutting the legs of a spider and admonishing them because the knife they are using is insufficiently sharp.

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  3. Please Mr. Spoonseeker, and others much associated with UK ME — I should so like to see your individual thoughts set down on this subject: what are the particularities of UK structures, NHS structures and provisions, UK culture, UK history, UK class system and so on that they have provided a hospitable environment for the cultivation of such rotten fruit.
    It does seem that the native species (of Englishpersons et alia) seem to be less sympathetic to and tolerant of the sick, and especially the chronically sick, among them than perhaps some other cultures. Would this be borne out by any academic research? Has this helped the pre-eminence of Wessely White et al and now the new younger standard bearer, Crawley?
    Why has the country proved so vulnerable to badly done psychology? Once there was the grand Tavistock, and now there are Kings and QMUL. Barts, too, has been willing and eager to become soiled by dreadful work. why?
    Sometimes it seems as though the BPS clique have figured out how to manufacture and enforce the equivalent of UK class system superiority (as I encountered it in the 1970s.) That is, they captured pinnacle positions of power and prestige for medicine, and reign therein totally protected from reason and competition by some aura of inherent superiority which survives and thrives quite apart from actually scaling heights and mastering accomplishments as “commoners” like Nobelist Ron Davis or Bill Gates have done. Now they reign for who they are and not for what they do and it seems nothing short of nuclear fission can bring them down. And, as in other permanent hierarchies, the mere peasants or yeoman (like PWME or Nigel Speight) who imagine that they have rights to live or do honest work can find themselves arbitrarily done in at the mere whim of the powerful.
    Why then does this flourish in the UK? (We have equally dire problems, but I have some idea of how our all-American bad guys do their thing.)

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    1. An interesting question but I’m not sure of the answer. Part of the problem may be that this is a relatively small country – certainly by US standards – so the likes of the bps ‘researchers’ are big fish in a smaller pond and they therefore reign supreme. Did you read my earlier post on ‘Hillsborough Law’? The conversation between Eddie Meir and Andy Burnham seemed to accept that there is a problem in this country whereby ‘ordinary people bring genuine complaints but are dismissed and even denigrated by the establishment’. Burnham described the latter in terms of ‘a cosy network of relationships between high ranking people in public bodies and the media’. It is certainly a problem. I’m not sure what we do about it – or how we get people to pay attention – except to carry on spreading the truth whenever we get the chance. https://spoonseeker.com/2017/07/18/hillsborough-law-shifting-the-balance-in-favour-of-truth/

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  4. How long? Until PWME fight back with spot-on James Carville style public relations (prompt rebuttal of falsehoods and effort to dominate each news cycle) and perhaps launch some appropriate suits for slander, libel, malpractice, violations of international conventions and EU rights law, etc — until then, that’s how long. Meanwhile cheers and congratulations for Charles Shepherd this week. A good start.

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  5. I have had ME for 37 years and initially tried every crackpot remedy I could because I was clutching at straws. You name it, I tried it but before the LP came along I stopped trying so called ‘alternative medicine’ because, of course, I didn’t get better and guess whose fault that was! Mine, of course. I was accused of ‘blocking’ by many practitioners. Why the hell would a 34 year old happily married woman with two young children block her recovery back to a normal life? I don’t know why M.E. has garnered this kind of attitude. I remember one journalist calling it Malingerer’s Ennui. It’s hard enough having the illness without getting the blame. So when LP pokes its head up now and again I wish the reporters would insert MS, Arthritis, Parkinsons, Motor Neurone and any other incurable illness, especially neurological one. They should be asking the likes of Crawley and Wessley as well as the LP people that if this treatment is so good why not apply it to other illnesses?
    I also believe that too many similar conditions get put under the M.E. umbrella through sheer laziness and misunderstanding. I do believe that people get Post Viral Fatigue because I’ve known people with Glandular Fever. I also believe that people get Chronic Fatigue Syndrome and that it is as much of a mystery as M.E. but if someone would just come and ask me I would tell them what the difference is. I write about it whenever I can but who will listen? There are far more symptoms to M.E. than there are to PVF or CFS. It doesn’t mean that those non M.E. people are faking it or are not ill. As long as all these conditions get put under the M.E. umbrella I fear that we shall not make progress because it might well be that PVF and CFS do respond to some treatment or, in time, people do recover. My own experience and my own view is that if you get better than you ain’t got M.E.

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    1. Thanks for getting in touch, Pam. Delineating the different conditions and sub- conditions is going to be very important I think, and it’s particularly frustrating when researchers such as Esther Crawley keep running them all together. That only leads to confusion. My own illness started with glandular fever and it certainly feels like ME, range of symptoms and all, though in the early days it was perhaps reasonable to call it PVS. Perhaps I would have stuck with that name if I’d got better but unfortunately that didn’t happen.

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