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!
Wow. What a sword you have and how brilliantly you swing it. You should, perhaps, tweak it for the general populace and submit it for publication where it will be widely seen.
One point missing (or maybe I missed it), is that “researchers” such as Sharpe and Wessley are embraced and funded by the government and by insurance companies because their theories absolve those entities from any sort of financial responsiblity to the ill. They’ll give Sharpe, Wessley et al. 11 million pounds to spread their opinion because it’s an investment that saves insurance the much larger cost of helping the sick.
Imagine how much could be saved if Sharpe and Wessley took on (currently) incurable cancers.
Oh Honey, you’ve done it again. Those posts I’ll write when I can get my act together – you’ve written another one for me. I’m sicker than before now. Possibly going into hospital soon. No doubt a foolish strategy that simply panders to my desire for attention (even though I hate hospitals, they give the creeps these days – strange, I used to be a medical social worker. But it’s different on the other side and I remember what we used to do to the medically unexplained patients. I’ll write about those poor souls one day.) But I’ve got a bunch of symptoms I’ve not had before and I can’t do much(I shouldn’t be wasting energy writing but you posted so…) They may well treat me like shit, but here’s hoping.
Anyway, yes, I’ve also wondered whether people have a vested interest in maintaining a client base of incurables. It makes me think of the hostility of the church to science all those years ago.
Also, their refusal to delineate and differentiate fatigue disorders. Their studies appear to carry statistical power (which is why their studies are the only ones to make it into the Cochrane Review. That and the fact that the Cochrane Review is written by Wellesly) but one thing I learnt in stats: garbage in, garbage out. Sloppy and overly broad inclusion criteria is the problem.
If they had used, or would use, the Canadian Case Definition, I would take them more seriously.
Is it true, do you know, whether or not I would be excluded from the expensive new trials (FINE and PACE)? I understand that they are excluding people who suffer post-exertional malaise, and possibly neurological problems.
Does that mean they don’t think I have ME/CFS? Does that mean they will state that their results don’t apply to me?
Cheers.
“I understand that they are excluding people who suffer post-exertional malaise.”
That’s everyone with M.E. then…. :/
A brilliant post. I will be amazed if he responds, I must confess, but I am glad that I read it.
Regards,
Ricky
[[ Please excuse odd mistakes or brevity, typed via on-screen keyboard ]]
I’ll do so for sure, Splodge – thank you so much for your kind comments. I’m so sorry to hear your condition’s worsened again. I’d dread going into hospital, but then again in some ways it’d be a relief: some proper investigation, maybe. I too have had a cluster of very worrying new symptoms: neuro-ish (who am I, a doctor?) like increased frequency and new types of more severe migraines, dizziness, hands and feet tingling, blurred vision etc. along with the usual hearing horrids, and wondered if they might try and admit me: but instead, it’s been murder even getting a referral to a neurologist. I’d say it’s reassuring in that no-one thinks I’m dying, but then a lovely acquaintance of mine from some years ago was sent home from A&E last week after being told she had gastric reflux, and then shockingly died of a heart attack that night (in her 20s). It’s very hard to keep the faith in 21st century British medicine.
Of course dizziness, tingling, blurred vision etc. can all be attributed to mental state, as can a blue nose, presumably. It’s that falsifiability thing again. The symptoms were sudden onset, with low anxiety at the time of onset. Honestly, I spend a lifetime accusing myself of “somatising” every physical illness: it’s a disease in itself. Maybe writing this journal entry will help me finally quit paying attention to the pointy-headed tutting psychologist on my shoulder with a clipboard. I’m ill.
Anyway, I’m sorry to moan on. I hope your hospital stay helps you, I really do. I’ve also read as you have that the FINE and/or PACE or some such trial rules in effect do impose limits that rule out such criteria, but I’m pretty floored now and can’t chase up if it was from an over-energic ME advocacy document or real live truth. I’d love to know, and if they do, whether they propose to publish their results as only appropriate to people with World Health Organisation illness category “chronic fatigue” R53.82 which specifically rules out the category G93.3 “benign myalgic encephalomyelitis” listed there as a physical disease, as would the criteria you state. My 48-hour lag of post-exertional malaise (a dreadful understatement of a word to the ear, really) is like a clock – I experienced it only a fortnight ago, and like a fool I always think the day after exertion “oh, I got away with it this time”, only to trip badly the day after with a knock-on for weeks.
I mean, you know, I’m sure those people with R53.82 deserve decent medical care, and if CBT and GET works for them, then that’s a good thing. It would have been nice however if those of us with G93.3 had received some of the funds that were allocated to help us out. Even the Chief Medical Officer in the UK instructed the Health Service to refer to the supposedly woolly combination of presented symptoms as CFS/ME (or was it ME/CFS) but the Wessely/Sharpe school refuse to do so. That’d be fine if they called it CF, and faced facts that that was all they could help.
Rave on. I have a feeling I’m talking to myself. You know all this. Shhh.
Mind_travel and Ricky thanks so much for your thoughts too – you’re very kind. Posting entries are like major volcanoes for me: lava bubbles suspiciously underground for aeons and then erupts in a very long and boring Vesuvius, followed by tepid and rather pathetic exhausted bubbling for several weeks. I’ve never got the hang of this “post about my day” thing. I hope you don’t mind me copying your replies over to my main weblog from Livejournal.
Michele, thanks for your comments too. Sword may appear sharp but it’s made of plastic and very very wobbly right now.
Yes, I’m not for a minute accusing the psychs of actually raiding the treasury in stripey shirts and masks for the £11m (or at least I have no photos yet…). I expect it’s a tangled web of gullible ministers and consciously or subconciously skewed views of what’s “proper research” plus some uneven weight of pressure that probably did it. But the money’s gone now and the proper research continues with a charity box rattling in the background.
To be fair to Michael should he choose not to respond, I should set the record straight and say he has worked for cancer patients as this page indicates: presumably providing a background of psychological support for sufferers. I’m always careful not to fall into a strawman argument: I’m sure many chronically ill people can benefit from forms of psychological support, that’s why I pursued it privately as a way to support my own illness coping strategies when I could afford to. The key is not to allow our valid protestation that investigation of symptoms indicative of disease should not be inhibited or starved of allocated funds to be caricatured as an argument that we don’t believe any form of psychological therapy can help the sick. Of course it can (to a limited degree, as a holding, coping strategy), but if all cancer research funds were tomorrow diverted to exclusively psychological interventions purporting to be real or near cures, I can imagine the headlines.
Must rest. Thank you everyone for coming back when I type so infrequently, and for being so nice. That’s the kind of psychological intervention that can at least help a little – pity it isn’t a cure.
Hi Honey, (and Michael Sharpe too – I hope you are reading),
Honey’s post illuminates so well the key areas of conflict and misunderstanding between the psychiatric Wessley school and ME patients. It deserves a much wider audience.
It is so unjust and ironic that PWME are accused of somehow creating or maintaining ‘attention seeking symptoms.’ Most of us have to spend years ALONE in bed (many of us are too ill to talk to carers).
I know I would receive a thousand times more attention and interaction if I had a social live, a career, a family of my own.
I can’t bear to think of how many years medical research has lost at the expense of behavioural research.
-Ciara
Absolutely brilliant response Honey. Thankyou so much for articulating what so many of us think. I feel that Sharpe is definitely trying to backtrack. They are beginning to realise just how wrong they have been and the implications that this means for them in the coming future when we all seek redress and for them to be brought to account. I hope you are reading this Sharpe because your actions have helped to make an already horrific illness even worse to deal with. Thankyou so much. Not………
This is an excellent dissection of the somatic theory, exposing the flaws for what they are. If only my brain were still able to arrange my arguments as well as this, I couldn’t have put it better myself.
If Dr Sharpe is paying any attention, then try to explain an illness that first hit me in 1970 at the age of 10. Clearly I hadn’t heard of Royal Free Disease at that tender age, and had no alterior motive to assume that being ill was going to be gainful in any way – rather the reverse. Until 1994 and a huge crash from which I have not recovered, I lived the ever-turning wheel of remission and relapse. In that time I garnered A levels and a first class degree; I had, I thought, the world at my feet, and I had the ability to stride through that world and make a life worth living. What I found I didn’t have was my physical health. Why would I give up those chances for the ‘gains’ of sickness, exhaustion, reduced finances, reduced contacts with the outside world – how is that to my benefit.. please, please explain.
Honey,
As many others here have already said, I couldn’t have put it better myself. Also, as suggested by someone else, perhaps you should seriously consider publishing it as an article for public consumption.
One minor point though – I would like to add to the list of illnesses trashed by psychiatry over the years – how about diabetes and alzheimers (for which there used to be a very Freudian explanation)?
For anyone interested in the issue of vested interest – those that seek to keep us marginalized for their own gain, read Skewed by Martin J Walker (if you can find a copy!).
Well done Honey,
Phil
Thatcher’s Britain, eh? Sharpey sounds like the Patrick Minford of medicine.
No, but seriously, that was very well argued, and well worth the energy expended.
i agree you ought to reproduce this for a wider audience.. it so hits the spot on all sorts of points. I would love the MPs and newspapers to read the bit especially about them having secured the entire budget, and nothing for research. What a scandal!
You are fantastic with words and arguments.
A tour de force, as always.
xx
Dear Honey
Very worthwhile but was disappointed to find it impossible to print off without losing chunks of words on right side of text. Not all my contacts amongst fellow suffers have access to a computer and some are not computer literate (hardly surprising as I’m 70+!). Do keep up the good work- more power to your pen (or mouse?).
Best wishes -A.
I’m a complete sucker for a good writing style: throw in passion and the ability to create reader involvement and I’m sunk. I hope that you never attempt to write a sales pitch for London Bridge because you know that I’d buy it from you.
I recently read an article by Frank Furedi on conspiracy theories. An interesting piece in some ways, and I was put in mind of it when I read an excellent series of articles about the prevalence of diabetes in New York. The rate of diabetes among adults is 1 in 8: demographic refinement among age and race means that in some areas the incidence is as high as 1 in 2. The series is worth reading for an illuminating discussion as to why the economics of health insurance work against successful management programmes and support heroic (income-generating) interventions such as amputations and dialysis. The articles are:
What does this have to do with conspiracy? Well, in the Epicentre article, one of the interviewees says, “You know what I think? I think there’s a cure [for diabetes]. We’re the poor, so they don’t want to give it to us.”
However, it seems as if conspiracy theories can be espoused by those who might be regarded as an authority. It is difficult to come up with any other justification for the stance that “ME is a belief system” (to paraphrase) than to assume that those who hold that belief are in the thrall of a conspiracy theory. A theory in which many thousands of people are willing to sacrifice their quality of life (professional, social and family) for the pleasures of living on Incapacity Benefit. Or should that read “eking out a cramped and circumscribed existence on Incapacity Benefit?”.
There was once a deliberate policy of massaging unemployment statistics by actively persuading people to “go on the sick”. Now the statistics are ridiculed by people who point to the very large number of claimants who cite depression as the source of their incapacity. However, from the little that I know, it seems as if depression is a relatively uncontestable categories. People are advised to claim under depression, rather than their true condition (e.g., pancreatitis, as recently demonstrated in a BBC programme catastrophically named something like On The Fiddle or ME/CFS, judging by the experiences people report) because you are more likely to succeed with a depression claim than one which is grounded in a condition that the claims checker is not likely to understand.
There is a controversy among psychiatrists and others about the status of ADHD. Some argue strongly that there is a well-established neuro-biological basis for the diagnosis. Other, equally learned people, argue that ADHD has no neuro-biological basis or is a cultural construct. However, I was struck by A Critique of the International Consensus Statement on ADHD that was put forward by Timimi (a vocal supporter of the ADHD as social construct theory) and 33 co-endorsers. The critique is interesting and raises some intriguing questions.
“Why did a group of eminent psychiatrists and psychologists produce a consensus statement that seeks to forestall debate on the merits of the widespread diagnosis and drug treatment of attention deficit hyperactivity disorder (ADHD) (Barkley et al., 2002)? If the evidence is already that good then no statement is needed. However, the reality is that claims about ADHD being a genuine medical disorder and psychotropics being genuine correctives have been shaken by criticism. Not only is it completely counter to the spirit and practice of science to cease questioning the validity of ADHD as proposed by the consensus statement, there is an ethical and moral responsibility to do so.”
From what you say about the allocation of research funding, it seems as if there is a shirking of the “ethical and moral responsibility” to fund bio-medical research into the aetiology of ME/CFS of the sort that would allow a full debate to happen. Without such research, and without the clinical testing of individuals with ME/CFS I do not understand how anybody can make progress in addressing these challenging clinical issues.
Honey Grrrrl,
Sorry- Just had to do that. Found you by accident- I think off of NHS BLOG DOC, or something. Anyways, after reading this I am impressed. The only thing is- IF something like a long term dose of antibiotic could help, or some other fairly inexpensive intervention that was medical, it would STILL be cheaper than multi-disciplinary pain clinics and opiates, and gabapentin and topomax…..yada yada yada- not to mention psych visits. Just a thot!
Hi, I’ve been reading your illness archives. I know someone with ME who has the melatonin, it seems to work reasonably well. Certainly much better than before without it.
hope this helps
This will interest you. From today’s newspaper –
“Poisoned: The Camelford scandal”
http://news.independent.co.uk/environment/article358010.ece
It appears that Simon Wessley wrote a paper called “The Legend of Camelford”.
Looks like RNase-L test for CFS is now available in USA and Canada.
http://www.canada.com/reginaleaderpost/news/arts_life/story.html?id=e2525e18-216a-4a88-9781-15fea1eeb576&p=1
I’m going to be brutal here and suggest that if you have the energy and the ability to construct what appear, at least superficially, to be reasoned arguments, then you must also be able to convince yourself that you are either capable or incapable of any physical exertion as well. There is no ME – take the first step, rest a bit, then take two more, then four – and then just get on with the rest of your life.
Sorry if that sounds harsh but believe me – I have been so close to being there too.
I have also heard the most ridiculous arguments for other “sufferers” of ME who don’t want any diagnosis which challenges their own security blanket of “illness” which they can retreat into.
Move out of the comfort zone, just a little at a time and enjoy the world again.
“Humbug”
Can you explain the low molecular weight RNase-L enzyme found in people with ME?
Can you explain why for healthy people amd people with depression, exercise increases the blood flow to the brain, while in people with ME, exercise reduces blood flow to the brain?
Can you explain the differences in gene expression in people with ME?
Thanks for taking the time to respond – If I can take your points in order.
No – but then neither can anyone else really. I don’t think anyone has ever suggested that lmw RNL is ONLY found in ME sufferesrs either. (nor does it seem to be found in all ME victims)
Brain blood flow is a tricky one – it’s a physiological response which should be completely out of any conc. / sub conc. control – yet, like heart rate, temp etc. some people do have an ability to, if not control, at least influence the brain blood flow as a “learned behavior” or a “stimuli induced behavior” I have to say I wouldn’t argue that point in either direction with much conviction.
After extensive periods of forced inactivity a lot of rehab patients suffer nausea, dizziness, headaches and occasionaly fainting attacks when they try to mobilise – possibly due to a similar response as muscle makes unreasonable demands on an already challenged circulatory system. No evidence to back this up – just postulating a theory. (might make an interesting research project)
gene expression?? Mmmm Bad science – do you know what it means? It’s certainly not clear to me.
Humbug
IIRC, lmw RNase-L is found in about 88% of CFS sufferers.
High levels of lmw RNase-L do appear to only be found in ME sufferers and also in acute multiple sclerosis sufferers. It’s not found in anybody else, not AIDS, not cancer, not fibromyalgia, not the healthy, not the depressed.
Do you also believe that there is no Multiple Sclerosis? If ME doesn’t exist, doesn’t it seem a little weird that the vast majority of sufferers would have this one thing that differentiates them from everyone else, yet they have it in common with each other, and with the most severely affected sufferers of another neurological illness, MS?
As for “extensive periods of forced inactivity”, some ME sufferers are not bedbound and move around as much as they are able. They can’t just get fitter though, if they go outside their limits, it can take weeks to recover, to be able to speak coherently again.
MRI scans findings match the reported cognitive symptoms. Oxidative stress levels are associated with clinical symptoms. Abnormal response to acetylcholine.
There is increased neutrophil apoptosis.
As for gene expression, see here http://www.newscientist.com/article.ns?id=mg18725093.700 and here http://www.newscientist.com/article/mg18524905.800.html and here http://www.newscientist.com/article.ns?id=dn3514
there is loads of it, google for it yourself.
A quote for you
“There is considerable evidence from different investigators, using different technologies and studying different groups of patients, of a state of chronic immune activation.
In summary, there is now considerable evidence of an underlying biological process in most (CFS) patients (which) is inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to rest.”
Anthony L Komaroff,
Assistant Professor of Medicine at Harvard
Some CFS patients have as low as 40% of the blood volume they should have.
“patients diagnosed with CFS and its family of illnesses have a set of proteins in their spinal cord fluid that were not detected in healthy individuals” Georgetown University Medical Center
Choline imbalance in the brain.
You may also be interested in the link with post-polio syndrome.
There is loads more of this stuff, 1000s of papers showing this is an organic illness.
Oh dear, this has become a battle ground.
“Humbug”, if you’d know Honey as well as i do, you’d know she’s one of the most sincere and kind women who’s ever lived and she fights to wake up every single day and she tries to get better every single day. Every single minute. It’s just not so easy. If she could go out and take a walk she WOULD. But right now, it would just KILL her.
Thank you “k” for your defending and explaining.
ulla – no worries.
If anyone is reading this who hasn’t yet seen the Canadian Guidelines, you can get them here.
http://www.mefmaction.net/documents/me_overview.pdf
you might want to scroll down to the bottom of page 16 of the PDF to see what the Canadian experts have to say about CBT and the British psychiatrists who promote it. Or if you print it out, it will be at the bottom of page 10. I printed out a copy for my doctor.
http://www.investinme.org is good too.
Honey:
Lovely piece of work. Why don’t you post it (or a link to it) on the Co-Cure site? It will get fast world-wide distribution from there, and it deserves to.
All the best with your health. You and all ME/CFS patients have my genuine sympathy.
Now to the real business:
Humbug:
I have been working directly and extensively with ME/CFS and fibromyalgia patients, and the relevant peer-reviewed databases, for over 20 years now. To put it another way, I know my stuff, technically and clinically. And you very clearly don’t.
There is a very subtle but very serious, debilitating and treatment-resistant problem with the physiology of these patients, which we are only just starting to unravel, and which has precisely ZERO to do with primary (or perpetuating) psychopathology or deconditioning. If you believe it has, then show me the unambiguous objective experimental evidence confirming that belief, and refuting alternative explanations. There is no such evidence in the database.
Furthermore, the peer-reviewed database on these conditions, which is currently around ten thousand papers in size, is one of the most inconsistent, confounded, and unreliable in all of biomedical science. So, please, don’t quote two or three cherry picked and misinterpreted papers and experimental results, mixed in with your half-baked ignorant anecdotal opinions, and still expect to be taken seriously by anybody. Ever heard of confirmation bias?
Do your homework properly, or just STFU, because as it stands you are waaaaaaaay out of your technical and ethical depth.
Harsh and brutal enough for you, amateur tough boy?
Bah, Humbug, yourself.
Meh.
Folks, I wouldn’t worry about Humbug…I smell just another internet troll.
Honey preempted Humbug’s ‘helpful’ suggestions in the original post by explaining quite adequately what happenned when she tried to just get on with her life (as Humbug suggests she do). Further, Humbug’s suggestion that Honey’s ability to explain herself proves she is capable of self-deception (so presumably no ability to explain herself would mean no opposition to the status quo) is simply a throwback to Honey’s comment that “if I protest, it must be true”.
It suggests either that Humbug has not bothered to read the post and is simply presenting the beliefs s/he already has, or that Humbug has read the post and is deliberately restating the arguments that Honey was repudiating(with no further elaboration) as a bit of a wind up.
Honey,
Your blog is very professional and you are clearly very articulate. You welcome feedback so I offer the following; it is meant in good faith and I have no intention to offend you.
Many doctors ambivalent about CFS. I think it is a very diverse label that probably encompasses a whole host of sub-groups. I accept that one or more of these sub-groups may have biological explanations for their symptoms that have yet to be adequately defined.
Unfortunately the same is probably true of any symptom complex you care to mention, and it is inevitable that at any point in time there will be a group of patients in this dilemma. Sadly the clinicians treating them will need to use the tools at their disposal, and if there is no evidence-based treatment for a distinct biological target then the clinician will need to resort to treatments that have been shown to improve outcome regardless of any postulated disease mechanism (antidepressant, graded exercise, CBT).
My own belief is that the vast majority of CFS patients do not belong to such a sub-group and that their reported symptoms are psychosocial in origin. I say this because in my experience there is an unfeasibly high probability of such patients having adverse social circumstances (predating onset of symptoms) or mental health problems (whether these have come to clinical attention or not). This is simply not my experience of, for example, MS patients.
The other consistent finding is in relation to work. Many patients with CFS will submit extraordinarily lengthy and introspective accounts of their symptoms in support of applications for various types of benefits (I make no comment about the length of your posting), and will often seek a medical report in line with their own pre-conceived expectations about their fitness to work. In other words, advice is sought far more frequently about avoidance than about rehabilitation. Again, this is not true of other disease groups.
Look at the Action for ME site (http://www.afme.org.uk/default.asp), and compare it with that of the British Heart Foundation (http://www.bhf.org.uk). The former contains virtually no advice relevant to returning to work, the latter is expansive on this point (e.g. http://www.bhf.org.uk/publications/uploaded/no_21.pdf).
This suggests to me that the people who have compiled AFME are not interested in helping their members return to work, and if the site has been developed in response to requests for information then presumably the members are not either.
Finally, I am irritated at the use of the term ME and if we must use a label I prefer CFS. ME implies a specific pathological process which was presumptive and for which there is not convincing evidence. It would not be acceptable for clinicians to use inaccurate terminology such as this in any other context and I fail to see why it is acceptable here.
This is purely my personal perspective and I would not presume to comment on behalf of others. I had better also make it clear that I am not Michael Sharpe!
Dear Anonymous,
I’m not offended, mostly, and yes this blog does and always will welcome comment, albeit that it’s wiped me out sufficiently that I haven’t written anything for so long that I feel wholly ashamed about my lack of replies. But better to air views such as yours that are so prevalent than have them said behind a patient’s back. To take your points one by one:
I’ve got no disagreement with the suggestion that many of the varying case definitions for CFS cover sub-groups: indeed I’d emphatically state that I’m sure they do. Some criteria are so broad that they clearly cover chronic fatigue per se, instead of delineating CFS, which by any sensible definition is a different thing, as chronic fatigue of course can occur as a symptomatic result of many disease processes, physical and mental. Indeed, many of the broader clinical criteria for CFS have been used to great advantage in studies which purport to demonstrate CBT and graded exercise therapy as near-cures. And you would indeed expect these to be helpful for someone with clinical depression: the starting criteria seem to ensure a self-fulfilling prophecy in many cases.
With regard to the stricter criteria such as the Canadian Clinical Case Definition, while I think these would provide much more clearly delineated results in such trials and wonder why they aren’t considered, I still am in agreement that this smaller group of ME/CFS patients may well exhibit sub-groups, as are most researchers who search for organic components of disease. I don’t think many are in disagreement with you and am not sure why you think they are.
It’s when you start talking about your “own belief” that I lose the plot. Although anonymous, I would guess that you must be a GP or other health care professional, indicating as you do sufficient contact with sufferers to allow you to reach your own conclusions of their mental states as a whole? It does concern me that you bring so many seemingly anecdotal beliefs to your stated regular contact with people with this/these conditions. There’s something of an irony here, bearing in mind the meat and potatoes of your comment concerns your beliefs (rather than cited clinical evidence) about their supposed belief systems. It’s not clear to me whether you think these ill people are wilfully manipulating health services to their own advantage, or whether they subconsciously perpetuate symptoms due to some supposed emotional or financial gain. All I can say is that I hope you are upfront with your own “pre-conceived expectations” when you meet a new patient.
One would hope that someone involved in the care of the sick would wish to take a rigourous scientific approach to double-check their own anecdotally derived notions. Others in this thread have eloquently outlined just a few examples of the growing body of evidence of organic dysfunction in such patient groups, yet you make no comment or critical examination of these results, or citations to support the very polarised slot into which you place people like myself. What happened to double-blind science? The irony of my own exhausting fight for several years to regain paid work by a fairer approach to my rehabilation when pitched alongside your claim that most ME/CFS patients seek avoidance and benefits makes my head spin, honestly. Has it not occurred to you that the reason so many seek advice on benefits is precisely because this is such a disabling and misunderstood disease? Are you aware of the drop in standard of living someone moving to benefits from a comfortable job must endure? It doesn’t take much research to seek out just how many such applications for DLA or pensions by people who are genuinely severely disabled fail compared to, say, those with heart conditions. I would suggest this is precisely because of persistently anecdotal views like your own becoming the received wisdom. In other words, you perpetuate your own belief system here by producing such negative air around those with ME/CFS when an employer considers what to do next. The same goes for those like myself, who are doing exactly as you wish: fervently seeking rehabilation and an enlightened return to work, and failing simply because anecdotal views such as your own mean that the same sympathy that might be extended towards someone following a stroke or cancer are so tragically missing due to the underlying subcurrent of suspicions of intent. I can’t speak for AfME (I’m not a member), but if we’re doing Trial By Google, even a cursory glance at support groups for ME on the internet will show many a positive interchange between sufferers concerning return to employment amid the current widely-derogatory framework in which our illness is placed: such return something I and everyone I know with the slimmest chance persistently seek. Conversely I could cite a hundred other patient support sites for different conditions that don’t prominently feature advice on return to work, but I wouldn’t dream of drawing conclusions about the psychosocial unwillingness of, say, diabetes patients to seek employment instead of sponging.
I’ll leave other readers to judge your aside about the length of my entry, and presumably also of this comment. Except to say that it seems an unnecessary snipe to me. “I make no comment” is of course a very distinct way of making a comment and inviting interpretation of my writing style as evidence of my own presumed obsession with illness and gain from it. Clearly you could have just left this aside out had you not intended that. A bit mean. When there’s little public support, individuals need to speak out, and some do it less eloquently or succintly than others: maybe I fall into this category. Suffragettes and anti-slavery campaigners wrote fairly long tracts I believe too. As I’ve stated frequently, this site is more of a collection of essays about illness and gender than “how’s my day been” blog entries, and accusing me of going on about my illness seems a bit like accusing BBC News 24 of always banging on about current affairs. My illness is emphatically not my hobby. I hate it, I hate reading about it, I hate having to contend with views like these, and should I be able to leap out of this bed tomorrow and get back to work I’d jump at it. I spent a blissful 10 minutes outside last week: you won’t believe the smell of grass if you’ve never experienced 2 years in bed. I’d like to do it more but it makes me very sick.
Finally, the naming issue: when I suggest to my doctor I have flu, he doesn’t throw a hissy fit and tell me that the word “influenza” is a misnomer from 15th century Italy indicating unfavourable astrological influence and I’m spreading misinformation. Instead he uses a convenient shorthand that we all understand and nods. I know of very few researchers who now believe that flu is due to Saturn’s rings, or that ME is due primarily to inflammation of the spinal cord: you’ll know of many more illnesses whose names derive from unsound original medical criteria and yet don’t impede understanding in any way. Sufferers often object to “CFS” as it characterises the disease primarily as being to do with tiredness, when at its mildest it’s more like severe… well, flu actually, with exhaustion without sleep, severe muscular pain, gastric hell, neurological interference and sometimes traumatic mood change. It’s the a posteriori renaming into something equally inaccurate that people question I think, but you’ll note that I refer to it as ME, CFS/ME and ME/CFS variously in this weblog, partly for international readers, and partly to stand a fighting chance of communicating with people like yourself. As long as you realise you’re at odds with the
Chief Medical Officer, Sir Liam Donaldson if you insist on calling it “CFS” without reference to the widely known phrase “ME”: but that’s up to you. I suggest you don’t get too hung up on insisting that others get hung up on it though.
In response to “Anonymous”, I would like to add the following comments:
1) Subgrouping is perhaps THE crucial issue at the centre of the ME/CFS controversy. The criteria used in many studies (Oxford / Fukuda) are so vague that they could include people with almost any non-specific health problem. Rather than helping to narrow things down, to isolate and identify specific disease processes (or even to come up with a genuinely useful “syndrome”), the use of such criteria has been profoundly negative. This has resulted in confusion, fustration and dis-interest on the part of medical / research communities, and is the reason many patient groups are calling for this to be addressed.
2) If we’re resorting to anecdotal evidence about the types of people who have ME, I can give plenty of examples of people who have not had “adverse social circumstances” prior to their illness. I can only suggest that owing to the above mentioned vagueness of criteria, you have been dealing with a “mis-labelled” set of patients to begin with.
3) Introspective? You bet. When modern medicine fails you, that leaves a hell of a lot of questions, and precious few answers. I really don’t think you have any appreciation of the sense of helplessness that many people with ME have because of this. We have to ask questions because you don’t.
As for this issue of avoidance, again – you bet. I realised at a crucial point in my illness that “pushing through” the exhaustion, as I was advised, was making me worse. After 9 months wilfully avoiding pretty much every activity in my life, I started to get better, not worse. I suggest you read (with an open mind) the work of Dr Paul Cheney in the US about the whole issue of “protective” fatigue. Go on, I dare you.
I bet by now you’re groaning pretty loudly. Have I been on benefits? Yes, for six months. I lost about £3k from my savings over this time, because believe it or not it’s near damn impossible to live on benefits. I almost lost my job, but thankfully I didn’t. But what about my attendance at work? It’s a damn sight better than some colleagues who have back problems or depression. The stigma of ME is such that I keep quiet about it, but I have been forced to work part time, because get this – I am actually ill – and I bear the financial consequences with no help from anyone.
4) Regarding Action for ME, yeah – they’re crap. So what? Why don’t you look at the work of RiME, ME research UK, or the 25% group?
5) Finally, the use of the term “CFS” does more than irritate me. ME may not be the best medical term. But CFS is no more medically relevant, and has been politically damaging – with real consequences for people with ME, because it undermines the credability of the illness and those that suffer from it. Because of this, I find your post quite insulting – you’re either really, really ignorant, or totally lacking in empathy for people you’re supposed to be caring for.
Honey/Mongoose,
You seem to agree there are sub-groups and that there will be different disease processes in different patients (some of whom may have organic illness, some of whom won’t). We could debate the relative percentages but I don’t think we’d ever reach agreement.
It is entirely legitimate for me to allow personal experience to inform my opinion. Since you ask, if a CFS patient wants to know my personal views I think it is a fair question and I answer honestly and (I hope) diplomatically. If they don’t then I don’t see it as my job to foist an unwanted debate on them and I do my best to offer evidence-based treatment. Of course you are right that as a profession we have a consensus view (personified in the CMO) and this is what I would offer to a patient unless they requested otherwise.
Again, my observation that patients with a CFS label tend to be more introspective is just that – an observation. And I accept that this is partly explained by the nebulous nature of the condition. As for my snipe about the length of your post – you’re right, a cheap shot and I’m sorry.
As for work, I am not suggesting that all CFS patients have an avoidant motive. But I stand by my claim that vocational rehabilitation has a surprisingly low profile, and I don’t think that can be adequately explained by the severity of the condition or prejudice in society as a whole.
Terminology – we have to disagree. CFS is the best label because it is accurate. It is purely descriptive, because the disease mechanism has not been defined. A syndrome is just a recognised pattern of symptoms, and a name that implies anything more is simply inaccurate. I don’t think this makes me ignorant or lacking in empathy. I can’t pretend to be too interested in Prof Donaldson’s preferred terminology because it has no bearing on what I have just said.
I think we could go round and round on these points, and that for the timebeing we won’t agree. It would be interesting to have the same debate 10 years down the line, if you’re still blogging, to see where the research has got to.
I wonder if you know that CFS rates on average to be more debilitating than end-stage renal disease? In the US, people with ESRD are fast-tracked to benefits. I think the disparity in function of ME is because there isn’t treatment directed at the disease itself (though there are lots of things doctors can do to identify and treat comorbid conditions like dysautonomia, and attempt to treat symptoms like insomnia).
Suggesting that people aren’t motivated to get better or are not interested in normal life activities (such as work) is another cheap shot, I’m afraid. If something looks weird to you, there’s probably a reason you haven’t understood yet. Maybe find a collection of what people have said they wanted to do, if they had the physical ability (i.e. were cured tomorrow; patients tend to overestimate, rather than underestimate, what they can do). Here’s one:
https://laurachamberlain.co.uk/2015/05/12/me-awareness-if-we-were-cured-tomorrow-what-would-we-do/
BTW, it’s 10 years later. ME/CFS still has next to no funding. But the IOM said CFS was a stupid name. You can find the report by searching the National Academies of Sciences website for “SEID”. This report summarizes the research up through a few years ago. Newer research can be found at the Open Medicine Foundation (that is pretty neat), Centers for Infection and Immunity, Invest in ME, and so forth.
As far as “evidence-based” treatments, not sure what you had in mind because you didn’t specify, but the stuff typically labeled as that has been debunked.
http://www.meaction.net/2016/08/18/ahrq-agrees-get-useless-cbt-ineffective/
http://www.senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/
http://www.virology.ws/2015/10/21/trial-by-error-i/
best wishes
Anon – I don’t suffer from ME, and having read your comments above I have to say that I am quite relieved that you are not *my* GP.
I would be interested to learn the sample size of ME patients you base your ‘experience’ upon – perhaps you have a peer-reviewed paper which I could read?
I have several friends with ME. I love the fact you are fighting their corner so brilliantly. Thank you.
Thanks Canna W. Although I’m a deep skeptic about conspiracy theories, sometimes it does still feel like a very one-sided struggle to prove you’re not a victim of self-delusion, but in fact, ill in a much more straightforward way, like other people. People such as yourself who take the time to leave a line are such an encouragement to keep on. Thanks!
Mongoose: all have to say is “yeah”.
Anonymous Doc: different sub-groups don’t necessarily imply different subsequent disease processes, as I’m sure you know. Different instigating factors may of course lead to similar or identical processes in, say, immune system dysfunction or mitochondrial energy production. I’d vigourously agree that some who are classified by their doctor as falling into the so-called CFS bracket may have not have organic illness, and that conversely a whole bunch of people classified as having depressive illnesses may well be misdiagnosed CFS/ME sufferers with organic illness instead. In my view the criteria is patently to blame: use something more sensible and your patient populations will become a whole lot clearer and we can start doing real science to help both populations, this time with government funding.
Allowing your own anecdotally-derived belief system so strongly to sway your own treatment of patients, leading you to believe that the “vast majority” of CFS patients you treat have purely psychosocial problems really concerns me, though. I don’t want my GP to base his treatment plan for me on a couple of Googles of charity sites from home. “My gran smoked 60 day and it never did her any harm” springs to mind. Science please, from my GP, not anecdote.
I’m still not clear if you’re a GP, psychologist or therapist or indeed one of the rising tide of GP bloggers, but yes, please do pop back. I’ll endeavour to keep my weblog alive. Let’s call it 5, not 10 years: I’m fairly confident we’ll be somewhere by then. I’ll be agonisingly honest if the currently proposed therapies help me: I expect the same from you concerning your rather strongly-polarised bracketing of the patients you encounter should organic illness be demonstrated even more clearly than now, and a recognition of the harm these preconceptions may have done to hamper recovery. K?
Anonymous Doctor – you wrote “My own belief is that the vast majority of CFS patients do not belong to such a sub-group and that their reported symptoms are psychosocial in origin.”
I have no medical qualifications at all, so forgive me if I am asking something stupid and obvious that is common knowledge to medical staff, but I do need you to explain this to me.
If you have some healthy people, and some people with CFS symptoms that are psychosocial in origin, should you be able to tell them apart just from doing tests on their blood?
When I read that blood samples from healthy people and CFS people can be accurately sorted, it makes me think that this is a physical condition and not a psychosocial one.
Anonymous Doc – if you want to know where the research is *now*, so you can see how much progress is made in 5 or 10 years, check out the ME Conference to be held in London May 2007. Details are at the http://www.investinme.org website.
Dear all,
I came across this nicely executed site again. Whilst the textual analysis is most interesting can I please be allowed make quite clear what I actually meant and still mean by ‘undeserving sick’. The point is that UK NHS services tend to offer a rather poor deal to people who have physical symptoms but not an accepted disease diagnosis – that is they treat them as undeserving of care. And yes I actually do think they are deserving of care (otherwise why on earth would I bother researching treatments).
I really do hope that is clear. It surely must be time to clear up a misunderstanding that has gone on since 2005 !
Kind regards
Professor Michael Sharpe
Thank you for explaining this issue so clearly. It really does make life so much harder when we are discriminated against like this. I was saddened to read the post by a GP who, like many, want to label us as lazy and work avoidant. Sufferers are some of the most intelligent, brilliant people I have ever met. Many with fantastic careers before they became sick. Let me leave you with no doubt that this illness is hell on earth. I have a son who was 10 when I became ill. I am a devoted mother who struggles painfully every day to try to iron his uniform and sometimes unsuccessfully to make his tea. What mother who adores their child, would abandon them whilst spending days in bed? It breaks my heart I cannot look after him properly as I should.
Or that I can’t have a career. I loved working and am desperate to go out and see people on a daily basis. We are all desperate to do these things and to belong to society again.
Alas, it is not that simple. If it were a case of retraining our deconditioned bodies we would all be well by now as the determination to get well is incredible. However, just a little too much activity will leave me bedbound, dizzy and weakness with flu like symptoms and unable to lift a kettle. If I further persist to expend energy I will be bombed bound for weeks and may never regain the ability I had. Can you see now why you can’t just exercise yourself better?
I am deeply offended by both the GP’s view and Prof Sharpe. We are in a living hell. You are both making it ten times worse. I hope you can live with yourselves. We all look to the day that we will be vindicated and these people will realise the torture they have inflicted on incredibly sick people.