Michael Sharpe left a comment last week on this weblog in response to my entry in February quoting statements from a public lecture of his at Strathclyde University some years ago. I’m always one to believe in engaging with those prepared to debate openly as your response seems to indicate Michael, so I’d invite you to respond to this. I felt it important enough to devote what’s probably a whole day or two’s energy to this then rest, as I think this is the crucial debate on which the fate of people with ME in the UK depend. I also felt this important enough to deserve a new entry – not to steal the headline with my response, but you have your inaugural lectures and public engagements, and all I currently have is this weblog as podium.

For those who need some background to the ME and CFS issues in the UK particularly, you may want to scan this entry first (unashamedly my take: Michael’s are available online too). Michael is a Professor of Psychological Medicine and Symptoms Research, and influential in the school of thought along with his colleague Professor Wessely and others that proposes somatic explanations for people with ME, or CFS: in other words, that the perpetuation of my illness is due to psychological reasons rather than physical conditions worthy of investigation (other than that of simple deconditioning), and that the correct course of treatment is to realign my thinking and attitudes to my illness with cognitive behavioural therapy (CBT), along with graded exercise therapy (GET). I don’t think that’s an inaccurate summary, but I’m very open to being corrected. The theory is also applied to many other supposedly “medically unexplained symptoms”; as an example Professor Wessely was influential several years ago in promulgating the view that Gulf War Syndrome may be a form of false belief. Wessely classes many such conditions as “psychogenic illnesses”, comparing them to outbreaks of hysteria over “spirits and demons” (New England Journal Of Medicine 2000(342)).

Michael’s comment he posted here was:

A very well constructed website. And I agree that patients with CFS and related condition suffer as the undeserving sick of modern society.
But if you read Pygmalion by Bernard Shaw you will understand that that is a criticism of social morals and conventions – not a literal statement!
MS

Firstly, I’ve read Shaw, and with regard directly to the statement above, I confess that I’ve read, and re-read your original statements dozens of times now in an effort to see in what sense you meant them as supportive. The clouds have not yet cleared, and no light has dawned I’m afraid. I wonder if therefore you could help me read it your way? For others, the context from Pygmalion is a short monologue by Doolittle, father of Eliza, in which he’s attempting to extract five pounds from Higgins and Pickering for his daughter. There’s a copy of the monologue here and the context within the play here.

I hope you don’t mind a little deconstructing to help me better understand your original intentions linguistically. To do things backwards, let’s deal with the last sentence of your attributed statements from the 1999 lecture first:

“Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service.”

The first thing to note is that nowhere does Shaw use the phrase “undeserving sick” in Pygmalion – the phrase on Doolittle’s tongue is “undeserving poor”. But I know you’re aware of this, as you’ve shown a particular concern recently to defend your statement in other arenas by pointing this out. I’m wondering how an experienced speaker could expect his listeners to understand, on the hoof, that such a syntactically straightforward sentence could possible be an ironic reference to a short monologue from a play from 1916, when you only use one word in common with that play, “undeserving”, with seemingly no referential clause.

In other responses I’ve seen, you’ve echoed the same argument as you make here, that you always meant this to be understood as an ironic quotation, on one occasion stating:

… when I referred to patients who are currently poorly provided for both by psychiatry and by medicine as “to paraphrase Bernard Shaw, the undeserving sick”.

I don’t understand your use of quotation marks above: are you saying these are the exact words you used in the public lecture in 1999? If so, clearly you’ve been misquoted in every other account, and did indeed attempt to supply sufficient context for your listeners to understand the irony of this comment, as every other account misses out any direct reference to Shaw.

Even were that true however, backtracking to the attributed statement preceding this in your lecture we run into confusions over your intended message again:

“Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the ‘reality’ of their condition (and who) are in this sense undeserving of treatment.”

Having read and re-read, I just can’t see how the words “… are in this sense undeserving of treatment” can be seen as a quotation of Shaw’s Doolittle’s “undeserving”, and therefore meant to be, in your words here, a “criticism of social morals and conventions – not a literal statement!”. It seems to me this can’t be read as anything other than a literal statement of your views, or at least, that you can’t expect your listeners and expected future readers to see it in any other way. I’m conscious of the bracketed words preceding it being indicative of something omitted, so if these clarified how you made this clear as a criticism of social morals rather than a literal view of yours that we are undeserving of care, please do take this opportunity to correct or amplify the quotation above. If not, put briefly: in exactly what sense do you, a member of a caring profession, believe that ME/CFS patients are undeserving of treatment, simple because we’re not going to die, and because we have a condition about which there is controversy (notably originating from your own school)?

Adding this preceding sentence to the first one quoted, it’s very hard for me to understand how, as you crafted this lecture, you expected your audience to understand these highly sensitive statements to not be your own, literal, views of patients’ status. It further darkens your portrayal of this lecture as benign and on the patient’s side to consider the context of other statements at the same lecture; for instance:

“I shall argue that patients themselves have played a part in denying themselves this type of treatment.”

True, if you mean purely treatment designed to change our minds, we may have done so, in the same way a man with a broken leg may resist using his last pound to pay a shaman rather than buy a splint. But can’t you see what effect this kind of tone will have on the tax-collector who decides where the various pounds go? And I know you believe strongly in the supposed “witchdoctor” effect a good physician can bring to a doctor-patient relationship, that of trust and belief in the efficacy of cure. Not that I agree for one second that witchdoctory could be money better spent on ME than actually looking down microscopes, but did it not occur to you that some of those same patients might actually read any one of these rather cavalier statements, which quite seriously (for this reader at least) put a serious rift between psychologist and potential subject? That such scatter-gun comments that (let’s be honest) class the patient in an entirely different category of mental state from the physician based on no factual evidence whatsoever other than that they show physical signs of illness, further serve only to break this bond of trust? It’s not like your lectures are delivered to MI6 in a sealed envelope.

In spite of your assurances that such statements are to help the patient out of the darkness of false illness beliefs and into the light of restructured thinking and the dissolution of the mirage of illness, surely any sensitive intelligent academic in a caring profession could see what effect such statements would have on a wider audience of decision makers largely ignorant of the condition?

Not to paint you into a corner, Michael, I’ll point out to others that Professor Wessely of course propagates similar views specifically about what he calls CFS with similar tone:

“Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role (sympathy, time off work, benefits etc).– Reviews in Medical Microbiology 1992(3)

Mention should be made here concerning the character Shaw paints of the person you say you are quoting: Doolittle. As a psychologist, you must be painfully aware of how careful your approach must be to those whose view of the world you believe to be aberrant or over-sensitised. It seems odd therefore, given your professed sympathy with those with ME/CFS, that you chose to highlight their plight with reference to a rather self-pitying monologue, which represents the voice of someone with a conscious wish to perpetuate his own poor state as a vehicle to personal gain. Doolittle states as he grafts for his five quid: “I ain’t pretending to be deserving. I’m undeserving; and I mean to go on being undeserving. I like it; and that’s the truth”. This resonates jarringly with some of your own documented views about why people with ME/CFS consciously or subconsciously perpetuate their illness:

“Many patients receive financial benefits and payments which may be contingent on their remaining unwell. Recovery may therefore pose a threat of financial loss.”
– Gen Hosp Psychiatry 1997(19)

“These patients want a medical diagnosis for a number of reasons. First, it allows them to negotiate reduced demands and increased care from family, friends and employer.”
– Gen Hosp Psychiatry 1998(20)

It does make me fleetingly wonder if Doolittle’s “I mean to go on being undeserving. I like it.” was in your mind when choosing that quote. Or maybe subconsciously?

This last point highlights the problem I have with writing this. You’ve chosen to engage by replying to my post, but I’d like to understand in what sense you can engage in such debate with someone who, according to your beliefs, is perpetuating her own state of illness, consciously or subconsciously, in a wish to cling to some form of financial/emotional gain she receive as a result. How can you engage in this with someone you believe to be under such an aberrant belief system that it keeps me largely in bed, causes utter exhaustion, very specific pain and flu-type symptoms so strong that sometimes I can barely move my hand for a glass of water, a myriad of seeming indicators of neurological, aural, ophthalmic, immunological and cardiac abnormalities, and can even lower my white blood cell count so much that an NHS-approved lab repeatedly requests multiple re-tests? In what sense can you treat me as a coherent free agent in this debate in which I unashamedly have a self-interest (regaining my previous health and life) and give my comments the credit I believe they deserve as an equal, rather than standing by my bed and nodding sympathetically? I suppose your reply or lack of it to this will indicate your view on this.

The nub of the issue for me is: is what Professors Wessely, Sharpe and co. do real science, and could it therefore make me well? As someone with a lifelong scientific academic rearing, I’m always aware of the importance of the principle of falsifiability. The problem (and for you, the strength) with your school’s proposition of what CFS by your various definitions is, is that it, like a religious theory, can seemingly fit any contradictory fact or form of patient behaviour. I might for instance ask in what sense you can believe I am seeking to perpetuate my sickness to gain financially, when I stand on the threshold of quite possibly losing a career I love, am skilled at, that paid me well financially and emotionally, and that I would return to with leaps and bounds tomorrow if I could. It can’t help making me think (forgive me) how you would feel should you be bed-bound tomorrow, on the brink of losing your own professorship, and having to wade through an incapacity benefit form in order to maintain some livelihood: I think you’d feel the same. Or do you consider yourself as potentially susceptible to somatic illness for personal gain? But, your answer to this may be “Ahh, in your case it may not be for financial gain. Maybe you have something to gain emotionally from support from family and friends”. Well, my family live 4 hours away by car. My friends are a mourned loss by and large, and the few locally who want to visit usually can’t, much to my grief and theirs, because the 48-hour kickback physically threatens to further my downward spiral of illness and further put to an end the lingering promise of returning to my current employment.

I can already hear you responding “Ahh, well maybe in your case you’ve become so accustomed to inactivity that in your deconditioned state, you’re wrongly or irrationally afraid that any activity will cause further illusionary illness” – and I can start to point out how a trip to the hospital last week (I insisted on going) is still costing me dearly with loss of sleep, pain, and physical malaise; but I can already hear you interrupting that maybe I did too much and I need a program of CBT and graded exercise therapy. I can try to point out that I spent many thousands on my own cognitive therapy privately during my decade or so of illness, and how I graded my own exercise long before this massive relapse, working upwards in steps to 30 minutes brisk walk a day when I could, gruelling though it could be. But wait, I can hear you already spinning the dial again, and suggesting it’s because I have such a set belief in an organic origin to my disease that this predicts continued perpetration of symptoms, I talk to too many other people with ME, I dwell on my supposed illness state too much. And I can respond that a recent study by UCL showed that patients with chronic conditions do better in online communities than, say, concentrating on daytime TV to take their minds off it all, and state my incredulity that researchers can miss the obvious backward connection that long-term sufferers of life-shattering conditions might look for organic agents in their illness, giving that thinking therapies and anti-depressants have failed them; and thus that research will indeed show that believing you have an organic illness predicts long-term illness because you are actually physically ill! But then you can hear my voice raising slightly, and you can silently tick a “neurotic” or “resistant” box in your head, and we start all over again.

Similarly, if I describe any physical pain, by type or location, it seemingly can be put down to a somatic condition or thought-disorder. Presumably losing my high-frequency hearing in my inner ear, as measured by audiograms, could have the same root psychological cause? When I hear psychologists nervously stating that Dr Gow and Dr Kerr’s recent discoveries of gene expression abnormalities in ME patients could be triggered by attitudinal states, I know the apaches really are at the fort’s gates. “God of the gaps” theory, I think it used to be called.

This is where my doubt in the scientific falsifiability of your scientific method rests: any fact can fit. If a theory can’t be falsified by any conceivably theoretical fact, it gains the status of a religion or… unsupported belief-system. If it can explain everything, it explains nothing. My view is that the fatal cracks down the middle of this set of theories that will render it in time a minor diversion of historical curiosity only for those with an interest in scientific fads are two-fold: (1) that the content is consistently more opinion, less facts, and (2) that it’s applied broad-brush to an ill-defined population of sufferers termed “chronic fatigue”, with no reference to exacting criteria (which exist, contrary to claims) to define subsets. Surely you’d do better to define your population groups like other scientists do with exacting requirement, instead of claiming it can’t be done (others can), and then working on those who clearly can be helped by CBT and possibly GET: those for whom depression is clearly a root cause, for instance?
Those of us with physical, chronic illness are poisoning your statistics.

Just how bendy the somatic explanation of ME/CFS is can be demonstrated so easily by flipping it round. Quite seriously, are you sure your own beliefs about CFS aren’t founded on self-perpetuating false systems based on conscious or sub-conscious personal gain? Does that sound insulting? I’m sorry if it does, but that’s where I am when I read your words. Is it not conceivable that you’re clinging to this illogical belief system because you have so much to lose if you let it go? Your reputation, feelings of personal worth, family and collegiate respect, etc.? I use the word “you” in the plural of course: your school of thought. Are you sure your beliefs aren’t false, perpetuated for personal gain, and have you considered trying some independent CBT to find out?

And I have to ask myself: if you’re wrong and my illness is the result of a continuing biological agent or process, still, what harm are you doing really, beetling about your office and shuffling fictional papers between your colleagues and sipping drinks at public lectures? The answer is: a lot. To quote you again:

“Reports from doctors for employers, insurance companies and benefit agencies could reinforce beliefs and behaviour to delay full recovery.” – JRCP 2000(34)

Meaning it’s probably better if doctors don’t look for physical abnormalities or signs of disease. Your school of thought has reportedly managed to aquire the entire £11m allocated by the government to help those of us with this condition, leaving internationally groundbreaking biological research by people like Dr Spence, Dr Gow and Dr Kerr to exist on charity alone; work that will undoubtedly result in a definitive diagnostic for ME in the next few years should they get a funding stream, leaving you the option only of a nighttime flit to a new group of unsuspecting suffers, whose symptoms are currently “medically unexplained” and therefore somatic. These are the very real effects on the reported quarter of a million people with ME/CFS in the UK that your plasticine models of psychologically self-perpetuating illness create. In many many quotes, you and your colleagues continue to actively discourage any investigation of physical abnormalities:

“In most cases of chronic fatigue, few laboratory investigations are necessary.” – Occup Med 1997(47)

“In clinical practice, no additional tests, including laboratory tests and neuro-imaging studies, can be recommended.” – Ann Int Med 1992(121)

Your school of thought also of course massively emphasises CBT and GET as “the only effective therapies”: but study after study, patient group report, and GP’s experiences are showing otherwise. I’m sure you’re aware that a survey by the 25% ME Group (survey page, survey – doc format) showed that a staggeringly high 82% who had faithfully tried graded exercise therapy as recommended, reported not that it hadn’t substantially helped, but that it had made them worse (and that’s very ill for people in that group). In this light, the fact that 93% said CBT was just “unhelpful” looks like a goal by the away team. This is all money that didn’t go to medical researchers and carers for symptomatic relief and biological research: money meant to be for the relief of sickness seemingly making very sick people sicker.

Of course, an outsider can’t jump out of the worldview of any ardent holder of true faith try as they might:

“The majority of patients with CFS have no doubt how they prefer their conditions to be seen….the vehemence with which many patients insist that their illness is medical rather than psychiatric has become one of the hallmarks of the condition.”
– your same lecture at Strathclyde University 1999

So our illness being caused by errant beliefs is a given, and if we cast any doubt on this they’re definitely causing it. One wonders why so many millions of people worldwide exhibiting a very similar specific symptom set would do this, but I guess you must have some really concrete evidence that it’s not just a physically perpetrated condition we can’t clearly outline yet but instead faulty thinking? Because otherwise, some of the statements above and the strong recommendations not to investigate physically or spend funds on this might look positively damaging to the unfortunate recipients of yours and your colleagues’ advice in a few years’ time. Going so far as to encourage the confiscation of test tubes in the name of providing me with care does seem to be going a touch too far to me.

But I suppose this whole response to your comment will fall into the same category of behaviour outlined above: if I protest, it must be true; if I float, I’m a witch. Glug.

Finally, thank you for your favourable comment about my weblog, but I can’t help wondering how you can decide my website is “well constructed” without visiting more entries than the one referring to yourself for more than two minutes, unless my web server logs lie or I’m too shattered to interpret them correctly. I mean, the rest of my site may be utter garbage, libel, or pornography: you may want to be careful what you compliment, as unscrupulous people might start quoting unguarded statements from professors on flyers and press releases, rather like people select favourable quotes on movie posters. As your web browser blocked the referer, I can’t tell how you came upon my weblog, so can only guess for now that you were googling for your own name, but I’d be interested to know if it was via another route. But surely, if you consider the illness we call ME or CFS a false belief state rather than organic illness, as a psychologist your scientific curiosity must be piqued enough by the presence of the weblogs of ME sufferers to wish to study them in more depth? Such weblogs do after all represent the internal mindsets of such objects of study as myself, or indeed (equally interestingly, surely?) our conscious public presentation? It therefore surprises me you didn’t read more than your own page, but thank you for the compliment anyway.

To use history to inform the present, my guess is that your own salary is assured: psychologists with a concern that seemingly biologically-triggered and sustained illness states may in fact be instead largely psychologically maintained have shown themselves nimble-footed in moving from patient group to patient group as biological causes and perpetuating elements are discovered. In the past, to the best of my knowledge, schizophrenia, Parkinson’s, MS and stomach ulcers have all been attributed to primary psychological causes before a comprehensive trail of organic illness has been traced out through rigorous research work. The school of thought for somatic explanations of illness has always survived these blows, and I’m sure will continue to find new avenues for adventure when the increasingly deafening evidence for organic agents of disease in ME/CFS reaches its inevitable conclusion. To echo your own quotation with the same transposition of words, but from another speaker who should have known better: “the sick are always with us”. I’ll attribute it to save confusion later: John 12:8. He also said, almost as if he were working in a graded exercise/CBT clinic “take up thy bed and walk” – if only it were that easy.

Postscript: some commenters have suggested to my surprise that this entry may be of interest to a wider audience, so I’ve slightly restructured it for more general consumption at the following link: https://fumblings.com/msharpe – please use this link if wishing to refer to this article from another website or publication. And please drop me a line if you do!