Jean Martin Charcot was a pathfinding 19th century neurologist with a particular genius for anatomical dissection and postmortem diagnosis, but he may be best known today for his work on ‘hysteria’. In his book Freud, Richard Webster describes Charcot’s ‘classic case of neurotic hysteria’, in which a man named Le Log—– who suffered memory loss, paralysis and seizures after being knocked to the ground by a speeding carriage, was deemed by Charcot to be suffering psychological trauma from the accident. As Webster suggests in his book, such a patient today would be recognized as having ‘a case of closed head injury complicated by late epilepsy and raised intracranial pressure’. But the concept of internal head injuries was not understood at the time, so because Le Log—– had no visible signs of injury, Charcot assumed that the symptoms must be psychological. The poor man was misdiagnosed with ‘neurotic hysteria’ and subjected to psychological therapy, which won’t have done very much to cure his concussion.
Charcot did not invent the concept of ‘hysteria’ but his interest popularized its use and over the years it was applied to epilepsy, multiple sclerosis, Parkinsons disease, cerebral tumours, and a great many other conditions which were not at the time recognized as the physical problems they were later acknowledged to be.
The diagnosis ‘hysteria’ is not in use today but the medical profession’s habit of labeling any patient with symptoms that don’t fit the pattern of a currently recognized pathology as ‘psychologically ill’ remains as prevalent as ever. These days, they use terms like ‘somatization’, ‘conversion disorder’, and ‘medically unexplained symptoms’ but the concept remains the same. Any set of symptoms which aren’t in the medical textbooks is assumed to be ‘all in the head’.
In the 21st century there is really no excuse for this. A quick glance back through history will reveal that time after time this practice has led to misdiagnosis, as medical science has gradually identified more and more genuine physical conditions which were previously dismissed as ‘psychological’. Yesterday’s ‘hysteria’ is today’s epilepsy, today’s MS…
Ironically, while the physical conditions are required to meet precise and stringent criteria for diagnosis, the psychological labels seem to be largely defined by exclusion. ‘If you don’t meet the physical criteria,’ you are told, ‘you must have this other condition we’ve dreamed up…’ No further evidence seems to be needed. The health professional’s opinion is all powerful.
As far as I can deduce, there is no proof that conditions such as somatization actually exist, any more than hysteria did, but even if they may sometimes have some validity, the practice of allocating them to patients by default, just because medical science has not yet defined a specific template for their symptoms, is clearly mistaken.
So why does it continue?
I can only assume it is because it is convenient for the medical profession. Doctors are able to refer patients on for psychological therapy instead of having to admit that the patient’s problem is outside their knowledge, and at the same time it brings in extra work for psychiatrists and psychologists. So everybody wins – except for the misdiagnosed patients of course.
In this environment, is it really surprising that people with ME (myalgic encephalomyelitis) are so often misdiagnosed as having a psychological condition? It’s only the same thing the doctors have been doing for years: assuming that the state of medical knowledge is so advanced that anything not in the textbooks can’t be physically real and must be down to some sort of aberrant thinking on the part of the patient. When you look at it from this perspective, you could argue that the doctors aren’t really picking on people with ME after all. This is just what they do with conditions they don’t understand. They’re done it for hundreds of years. It’s nothing personal to us…
I’m sure doctors think they’re helping their patients by referring them on for psychological therapies – and in some cases they are, of course. Such therapies can be helpful, even where a physical condition exists. CBT (cognitive behavioural therapy) can be of assistance in ME, for instance, if it’s used to address obstacles to pacing such as guilt and ‘people pleasing’. But where it is used – as it predominantly is – hand in glove with GET (graded exercise therapy) to convince the patient there is nothing physically wrong with them and all they have to do to get better is to ignore their symptoms and push themselves regardless, then it can lead to a serious and long term deterioration in the condition, as evidenced by the recent ME Association patient survey.
One of the frequently repeated misapprehensions about people with ME is that we object to a psychological diagnosis because of the stigma it brings. This was most recently voiced by the former BMJ editor Richard Smith (in an otherwise helpful piece which called on the PACE Trial researchers to release their data). He wrote:
“The emotion stems from sufferers from the condition (ME) resenting greatly the idea that it may have psychological causes with the stigma that implies. The resentment seems to be that psychological problems are not seen “real” in the way that physical ones are and that they may result from “moral weakness” rather than a morally neutral virus.”
Goodness knows where Richard Smith got these weird ideas but they’re not something I’ve ever heard from people with ME. The main reason we object to a psychological diagnosis is straightforward enough: because it isn’t accurate. There is now substantial evidence that ME is (as the recent IOM Report describes it) a ‘serious chronic complex systemic disease’ with a growing body of biomedical research studies to support this view. A handy A4 sheet with details of ten such important findings was recently produced by Prof Anthony Komaroff, and the IOM Pathways to Prevention Report makes clear: ‘this is not a primary psychological disease in etiology’.
Furthermore, the psychological misinterpretation of the condition leads to inappropriate therapies which, as mentioned above, can have seriously damaging consequences for patients; it diverts interest and investment away from the biomedical research which is desperately needed; and it provides ammunition for misinformed media coverage like the Telegraph article we saw a few weeks ago, which can seriously damage relationships between people with ME and their friends & family and society in general.
These are the reasons why we want our condition to be recognized for what it is. It has nothing to do with the potential stigma of psychiatric illness. We have no reason to fear such stigma, as the truth is that we already have more than enough of our own. Sir Simon Wessely quite rightly speaks out against the stigma of mental illness, pointing out that such conditions are as ‘real’ and unpleasant as physical ones, but the truth is that this stigmatization seems to be just as prevalent among the medical profession as it is in society at large, and the medics who buy into it seem to reserve special disdain for those they perceive to be mentally ill yet who refuse to accept their diagnosis. It is true that if you’re mentally ill, you tend to be at a disadvantage in dealing with doctors. But if you don’t accept this label and – worse still – don’t respond well to the treatments they give you, then you’re really in trouble.
Welcome to life with ME.
Never mind that there is substantial evidence of biophysical abnormalities and none of an underlying psychological cause, the psychosocial model of ME so beloved of mainstream medicine, especially here in the UK, requires us to forget all that and believe we’re not physically ill – or else risk being seen as a difficult patient. We are asked to believe that the day to day reality of our illness is other than what it is.
In her excellent recent blog post, ‘The Politics of Stigma with ME/CFS’, Catherine Hale quotes the Buddhist author and ME patient Toni Bernhard on this subject: “we have been branded not credible witnesses to our own condition”. Catherine goes on to suggest that ME has been represented as ‘an illness of misperception of reality’.
Yet whose misperception of reality is really the problem here?
We patients with ME are sometimes described as having ‘medically unexplained symptoms’, yet what exactly is ‘unexplained’?
We don’t yet understand the exact mechanism by which our symptoms are produced but if, as the evidence suggests, we have a neuro-immune multi-systemic condition, that is surely explanation enough for why we are suffering.
What is less easy to explain are the many misperceptions of the medical profession:
- why any set of symptoms not in the medical textbooks is automatically assumed to be ‘psychological’, even though history shows this has consistently proved to be a mistake
- why people with ME are assumed not to be physically ill when there is plenty of credible evidence to show that we are
- why we are treated with therapies such as CBT and GET for which there is little evidence of efficacy and which patient experience suggests can be very damaging
- why PACE, the largest study in support of these therapies, is assumed to be ‘excellent research’ in spite of innumerable fatal flaws
It seems to me we are the victims not of ‘medically unexplained symptoms’ but of ‘medically unexplained assumptions’.
It is not us, people with ME, who are making these assumptions. But day after day, year after year, we have had to suffer their consequences.
Now, as a new year dawns, perhaps the medical profession will finally start to open its eyes to reality.
2015 brought many encouraging developments:
- The US IOM and P2P Reports have reported on the true nature of our condition
- New research funding has been announced by the US National Institutes of Health
- Prominent researchers such as Ian Lipkin and Ron Davis have spoken of a new urgency to ‘solve the puzzle’ of ME
- Even here in the UK, thanks to David Tuller, James Coyne and the work of the many patients and professionals who have chipped away to expose the flaws of the study over many years, pressure is growing on the PACE trial researchers to surrender their data.
Let’s hope that 2016 brings us closer to the day when the mists finally part to reveal the truth, and the mistaken assumptions of decades (and centuries) past are consigned to history.
While the clocks tick by on our lives, we wait to see…
Recommended Further Reading:
‘Best of 2015’ ME/CFS Roundup from Cort Johnson
The latest British legal position on ME/CFS – Your right to refuse inappropriate treatment
43 thoughts on “Medically Unexplained Assumptions”
Another excellent summary of the state of play so far. (y)
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This is an excellent piece. Thank you!
One minor point: Toni Bernhard isn’t a psychologist. She was a law professor before becoming ill, and was (and still is) a Buddhist.
Thanks for your kind words, Sim, and also for the correction. I’ve amended the post accordingly.
Excellent post. Thank you!
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I have a rare, invisible neurological condition that was accurately diagnosed in 2006. At one point I noticed a link between the onset of symptoms (it’s an episodic condition for some of us) and sleep loss and asked for a referral to the sleep clinic. My (then) neurologist had also suggested psychiatric support to help me cope with the unpredictable nature of this condition (MdDS). When I consulted with the neuro-psychiatrist at the sleep clinic I did not expect the physical diagnosis to be over-ruled by a ‘functional’ diagnosis and I had to get re-diagnosed with MdDS before my (then) GP would believe I have it. The neuro-psychiatrist’s clinical notes are largely inaccurate (she recorded a skiing accident that resulted in a broken leg as ‘an illness’, for example, and said my Mum’s epilepsy was ‘non-organic’), highly speculative and tainted by her specialism bias. At no point has she (or anyone else) been able to explain why she thought the symptoms were ‘functional’ or, if they were, what the mechanism for them could possibly be. All I’ve heard is euphemism after euphemism and – having read Dr Jon Stone’s work – I am deeply concerned that this terminology is still in use. What’s worse is that when I objected to this mis-diagnosis I was told that no diagnosis was intended to result from my consultations at the sleep clinic – IE the consultant has wriggled out of it. This makes a mockery of the statistics given in the ‘functional’ literature and makes me question the ethics of all those involved – especially that consultant who actually trains other doctors to diagnose ‘MUS’ and the newly-coined ‘bodily distress syndrome’. My understanding is that ‘BDS’ is a term that was invented by a couple of psychiatrists – which tells us everything we need to know, really.
Thank you for this excellent post and let’s hope we see the back of this unscientific approach to medicine in the not to distant future. I know that many rare conditions get misdiagnosed along the way and the number of people with them who report mention of ‘MUS’ etc in there notes is alarming. I’m with one of the leading experts on EDS/JHS who says this: “There is a common tendency in medicine when faced with medically unexplained symptoms to assume that they are psychogenic in origin. This is a high-risk approach that can have disastrous consequences. The joint hypermobility syndrome (JHS) story is a good illustration of this.”
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Hi mollymoyer, I’m so sorry to hear about your appalling experiences, but thank-you for sharing. Do you have a link or a reference for that marvellously astute comment on EDS/JHS? I’d love to be able to read more, and/or quote it.
The quote came from a paper by Prof Grahame but I can’t remember what it was called, sorry. His details can be found here: http://www.thehypermobilityunit.org.uk/index.php/prof-rodney-grahame and if you google for his papers I’m sure you’ll find it. Hope that helps.
I just happened on a link to that impressive quote by Prof Rodney Grahame. It’s from a paper: Joint Hypermobility – Emerging Disease or Illness Behaviour? http://www.clinmed.rcpjournal.org/content/13/Suppl_6/s50.full?related-urls=yes&legid=clinmedicine;13/Suppl_6/s50
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Many thanks for sharing your story. This is exactly the sort of thing that happens. It would be farcical if it weren’t so traumatic and damaging for the poor patients involved. It is like a collective psychosis affecting the medical profession. It’s as if they have been infiltrated by a bunch of fantasists who are then given the same credence as proper doctors. It’s ironic that I can only think of mental health metaphors to describe this situation. I’m sorry if I’m being unduly insulting – and I’m sure there have to be some psychiatrists who are doing a god job – but I am struggling with words to adequately describe this ridiculous situation. It needs to stop.
It reminds me of when my father was diagnosed with dementia by a geriatric consultant. He was then sent to a psychiatrist who noticed that he had a history of depression and changed the diagnosis to stress. He couldn’t remember where he was or what he was supposed to be doing but it took another eighteen months before he got back the dementia diagnosis. The psychiatrist’s word was taken as law. They only managed to overrule it by assuming that my father must have deteriorated during those eighteen months, but the truth was he’d been just as bad all along.
There are so many words they use to describe these so-called conditions. ‘Functional’ is one I’d forgotten: a particularly invidious example because it sounds perfectly innocent. People assume it’s describing a problem with the way your body functions. Only medical insiders know it’s a euphemism for ‘all in the mind’.
BDS is a new one on me. ‘Illness anxiety’ is another term they use: a modern way of saying ‘hypochondria’, I think. And I wrote in the post that ‘hysteria’ is no longer used, but a slightly newer word for it, ‘neurasthenia’ hasn’t entirely died a death. The only ME/CFS inpatient clinic in the UK associates it with ME/CFS.
Many thanks again for your comment. I hope you don’t have to suffer any further such nonsense in the future.
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Thanks for your response and yes, thankfully the nonsense years are behind me now. I’ve posted your blog in several vestibular and neurovestibular sites and it’s getting a lot of ‘likes’ and positive comments – lots of people have been through hell as a result of all the psychobabble. It’s been a while since I read some of the literature about ‘functional’ conditions but it might interest you to know that this word is used because it maps onto an understanding of modern imaging techniques (IE fMRIs) and is ‘easy to use with patients’. Yeah, right …
Another thing I found interesting about my interactions with the neuro-psych was that she claims to send a copy of her clinical notes to patients but in fact she does no such thing. Via clerical error I found out that she sends a whole paragraph (the ‘mental state report’) to the primary care teams that the patients don’t get to read. When I called her out about this the management response was to say that patients wouldn’t understand the language used and that’s why they don’t send that paragraph to them. This is beyond condescending and not ‘on message’ with Health 2.0. In my case she elected to include her take on my spiritual life in this paragraph and that should have no place in any medical record unless a patient wants it recorded.
Have you come across Dr Jon Stone’s site about ‘functional’ conditions? In his papers he states that ‘conversion disorders’ are a relic from the Freudian era yet he still seems to take them seriously on his site. I wonder if you’d be willing to post a link to this blog in the feedback section of his site and ask for his comments? I’d do it but I’m persona non grata with him because I told him I wasn’t happy with his advice to clinicians to ‘ignore the evidence from the physical records’ (or words to that effect) and intended to publicise this derogatory approach to science.
Again, many thanks for your excellent blog. I have a dear friend with ME who has also been though the psychobabble hell and has to fight hard for any treatment or support.
All best wishes.
Many thanks pollymoyer – I shall take a look at Dr Stone’s site. Is this the one you mean? http://www.neurosymptoms.org/#
I’ve just been reading an excellent new blog about the PACE Trial by Andrew Gelman. It has some discussion about functional/somatized conditions in the comments which may interest you.
I’ve also been sent a grotesquely fascinating Powerpoint presentation by Trudie Chalder (one of the PACE researchers) in which she discusses the various categories and sub-categories of these ‘medically unexplained’ conditions: a precise catalogue of the imaginary.
Freudian slip there: Too many psychiatrists do, indeed, like to play ‘god’; and too many of their sycophantic minions are happy to go along with it!
I can think of some who thought they were invincible. Maybe they’re having second thoughts.
I hope some of them are, but they are proving very stubborn, just like the PACE team, all over the World.
Phil Hickey over at Behaviorism and Mental Health has been doing a good job lately of exposing the fallacy of the chemical imbalance hypothesis, while the APA’s Ronald Pies has been wriggling to get off the hook of his own history of statements in support of it. Meanwhile the Council For Evidence-based Psychiatry had a great conference here in the UK last year, and the various video addresses you can find on YouTube, should be compulsory viewing to anyone who actually thinks modern psychiatry has a leg to stand on.
There is far more at stake than PACE. PACE is a symptom of a much deeper inconvenient truth, and the whole psych professions may well be on a turning point in history, where they either reform and get real: or they go down completely.
Talking about the psychs getting real, I wonder if you have seen this new study: Replication and contradiction of highly cited research papers in psychiatry. The results are very telling. Among 83 highly cited articles recommending effective psychiatric interventions, 40 had not been subject to any attempt at replication, 16 were contradicted, 11 were found to have substantially smaller effects and only 16 were replicated.
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While being investigated when ME originally presented and before my diagnosis (by my GP, eventually, bless him) I had a “diagnosis” of functional syndrome because of pain and weakness in my legs, loss of sensation and poor reflexes. After an MRI it turned out that I had 3 ruptured discs in my lower back putting pressure on my spinal cord…..But hey, what’s a little evidence?
These types of diagnosis are, as far as I can tell, neurologist and psychiatrist speak for “we haven’t a bloody clue what’s wrong with you but we don’t want to admit it”.
And great article, btw, thanks 🙂
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I think you’ve summed up the situation perfectly. That seems to be the unfortunate truth. Thanks for leaving your comment.
Thank you for that well-written and important essay. I’ve never been able to figure out why the psychiatric professional allows themselves to be “diagnosis of last resort.” Something else to think about: I suspect the phrase “medically unexplained symptoms [MUS]” originated within the insurance industry …
Like CFS too then perhaps. I wonder if the switch from lengthy psychoanalysis to predominantly treatment by medication has left psychiatrists with time on their hands which they need to fill – which is why they’re all too happy to take on conditions like ME which the other doctors in turn are all too happy to send their way. Though this wouldn’t explain why this seems to have been going on since the 19th century at least! Anyway, many thanks for your comment.
This is a very good point about the insurance industry, schweitz75. The condition I have to co-exist with (Mal de Debarquement Syndrome) shares many common symptoms with concussion and at one point one of my friends with MdDS asked me to help out a woman with concussion who’d been misdiagnosed following a psych intervention that was ordered by her insurance company. The psych decided that her symptoms resulted not from the concussion, but because her ex-husband had died at about the same time as her son had left home. As she said ‘My ex-husband is alive and well and my son is still at High School and lives at home.’ I suggested that she should call the insurance company and ask them to raise her concerns about the quality of the psych they’d employed. She did. They did. The psych resigned. Makes me think of the old joke ‘What do you call 100 psychiatrists at the bottom of the sea?’ Answer: ‘A start.’
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This is a very good story – and good that it turned out well – but it’s sobering to reflect that if your friend had indeed lost her ex-husband and her son had left home, she would have found it very difficult to prove the psychiatrist wrong.
Hmmm, I can’t seem to reply to your reply this time, Mr Spoonseeker – sorry. Yes, the neurosymptoms dot org site is the one that I was told to look at for an explanation of what ‘functional’ meant (after being given two different definitions by two members of the same multi-disciplinary team). None of the explanations hold water and do seem to be entirely imaginary. I’d understand if it was written by a psychiatrist but Dr Stone is a neurologist, as is Dr Derek Wade who also writes about ‘functional’ symptoms. I agree that psychiatry seems to be at a crossroads – let’s hope the right path unfolds.
Yes, the reply buttons sometimes seem to be absent for no obvious reason! I’ll take a good look at Dr Stone’s site. Unfortunately neurologists seem to buy in to the whole ‘functional’ thing just as much as psychiatrists.
I was diagnosed with M.E many years ago after several years of head against brick wall bashing around local GPs, one sent me down to St Georges in London, and I got an M.E diagnosis. It proved to be not much use because it’s just another excuse for GPs not trying to help get at the underlying cause: in effect ‘ME’ is no better than a label of ‘MUS’ if nobody is going to make an effort to investigate so that it becomes ‘MES’!I was abandoned to my own coping methods for maybe a couple of decades, but, eventually, I got so I couldn’t hold my hands over my head, and then couldn’t stand up without getting into trouble. I hoped that the ME ‘expert’ had made some progress since diagnosing me, so I wrote to her, but instead of offering me another consultation, she just referred me to ‘Jon’ (yuk) Stone’s site. I was pretty disgusted at the brush off–esp as a researcher at Hammersmith, I wrote to also backed her up though he’s been outspoken against PACE since. But I read through ‘Jon’s site, to see if there was anything in it. I’ve not seen it lately, but it was pretty much like any other woo peddlar’s site: It gave an intro on the author’s pet theory, and then lots of ‘personal accounts’ testimonials. No hard science, and nothing at all as to how this could make someone’s belly blow up and have one gasping for breath whenever any movement that put a strain across the abdomen and chest was undertaken.I had an email correspondence with Stone, asking him to explain how his ‘functional’ theories could apply to my case. He could not explain, and ended up just wishing me well.I think he means well, and I’m sure he does occasionally come across someone who does have a ‘crossed wire’ type situation–like the phantom limb people–but, when he, and acolytes, try to stretch thisâ into other medically poorly investigated cases, the logic soon disappears.Unfortunately, when you try to pin shrinks down to logical consistency, you soon find yourself being turfed out, as they are not at all used to being questioned, and are all quick to take offence when asked to, properly, explain themselves.As we know: they can’t, fundamentally, can’t, explain themselves, because there is no real research to back them up. That is why the PACE people are fighting so hard: and why their colleagues are backing them up. The game may well be up this time, though.I sure hope so!
The pressure is building up, not only on the PACE researchers but also on The Lancet – see http://andrewgelman.com/2016/01/05/pace-study-and-the-lancet-journal-reputation-is-a-two-way-street/
Thanks for this. I’ve not seen Gelman’s blog before. Good that he’s coming from the same place as Racaniello. They seem to have a lot of good people at Columbia.I’m also impressed by one of Racaniello’s podcasts–TWiP–on parasites, with the way they seem to approach diagnosis in the US model–or at least in Columbia’s medical school. It does seem as if their diagnostic staff do seem to see themselves more as detectives with a riddle to solve, that they will keep worrying at till they get the answer: whereas our GPs seem to think patients are there to worship them in their offices and provide them with a guaranteed income whether they do any actual work or not.Frankly, I haven’t met more than a handful of medical staff in the UK who I thought would even give my case a moment’s thought after I’ve left the room.â Whereas, in TWiP, they run a monthly parasite ‘wot dunnit’ and doctors and lab workers, consultants, professors, and even just ordinary people, rise to the challenge, and many send in very good and detailed and correct answers. And note: this is for enjoyment, not fleecing the patient with consultation fees. (It does make me think that a web-based clearing house for difficult cases, could probably get most of us properly diagnosed and treated. Anyone successfully getting us back to work could be handsomely rewarded by the DWP for saving them a fortune. And the GPs would only be too pleased to get rid of us–I’d be glad to see the back of the exclusive GP system itself, frankly.) Anyway, I digress. PACE surely has to go down soon, and then, perhaps a few more really interested young medical turks will step into the void left.[Sorry if I’m not appearing to format these replies, and not using the like buttons etc. For some reason, though WordPress sends me all these notifications, and shows me a web page with all my subscriptions on: it won’t let me click a like button without signing in, yet won’t accept any of my passwords or let me change them! Yet if I try to make another account, it says I already have one! Grrrrr! I can only reply by returning the email, and WordPress then removes all the formatting and runs all the sentences together!]All the best for a great blog.
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I could talk forever about the drawbacks of the NHS system but it’s probably better if I don’t! I think that the public in general think of doctors as being genuinely interested in working out what is going on specifically with the patient in front of them and that if it proves to be a complex problem they will rise to the challenge. In actual fact they seem to work on tick boxes and flow charts (or care pathways as they call them) and if a patient doesn’t fit in with this system and fit a particular recognized pattern they tend to get annoyed and are all too happy to ship the patient off to a psychiatrist. They don’t seem to be interested in solving the puzzle of a person’s health. They just want to make sure that they’ve jumped through the specified hoops, ticked all the right boxes, and no one is going to be able to sue them.
Just found the following on Twitter today: a review of the information found on health-related online forums. The abstract says: “Concerns over online health information–seeking behavior point to the potential harm incorrect, incomplete, or biased information may cause. However, systematic reviews of health information have found few examples of documented harm that can be directly attributed to poor quality information found online.” And indeed this review confirms that “Most of the information assessed in this study was considered by qualified medical doctors and nonmedically qualified respondents to be of reasonably good quality…. This suggests that discussion forum websites may be a useful platform through which people can ask health-related questions and receive answers of acceptable quality.” http://www.jmir.org/2016/1/e4/
I wonder if this could be because patients, though they may well not have as much background knowledge as doctors, are actually interested in trying to solve the puzzle of their illness. It makes you wonder how much doctors could achieve if they actually took an interest. Or in fairness to doctors (most of whom I know work very hard doing what they do), if the system allowed them to take an interest.
I’ve only been using WordPress a few months and it seems to be a very good platform except for these occasional glitches with the comments. There was no reply button next to your last post, for instance, so I’ve had to use a work-around. I’d take the issue up with WordPress but due to being a cheapskate I only have the free service so don’t have access to their helpline. I guess one thing you could try would be to get a new free email address (like yahoo or gmail) and open a new WordPress account using that.
I have an infinite supply of email addresses via Blur (except it used to be MaskMe, and the Blur log-in button keeps disappearing off Firefox since I did the update, and they don’t do an app for BlackBerry… but I will find ways round.). Trouble is, my posts and followed items go back years, so I really need to get in with my same name: and WP won’t let me use it, as it already exists! I suspect that their .com, and .uk sites are not as separate as they should be, so .com won’t let me in, because .uk says I already am. I get lots of similar such situations (Discuss was bad for a while): which is why I let MaskMe make up names and passwords for me in the first place.I think the days of the overworked GP are numbered and the system needs complete modernisation. Even Simon Stevens said as much when he took over NHS Englandâ, but he went quiet pretty soon after (and didn’t respond to my emails.). Whereas there is a strong tendency to defund hospitals and discourage use of A&E, what is needed is an expansion of A&E into a full multidisciplinary Diagnostic Service. In a way, it might actually turn out to be an improvement if the system was privatised, because the private sector (cf: superstores) certainly sees the benefits of getting everyone to come to one well stocked central location for all their needs!NHS trusts could steal a march on this (Manchester Hospital has come under fire from GPs for trying to do just that.) by making triage at an expanded A&E the first point of contact for everyone, and making the records go with the patient instead of locking them down to one GP at a time. It’s crazy to expect GPs to detect much in the community with little more than stethoscope, thermometer and sphigmomometer, and a rushed 5 minutes with a fully clothed patient!Nobody could even fix a car under such a primitive compartmentalised system. It really *is* a miracle they ever find the exact fault in the human machine. Give me the equipment: and I could diagnose myself: I’m quite sure.I’ve seen the reviews of health advice on the web before. Doctors are largely sh*t scared of the informed patient (Despite lots of BMJ promotion of us.), that the internet has made possible. It used to be almost impossible for lay people to learn medical topics when dependent on local libraries and library loans of one book or paper at a time. Now we can access the very best and latest findings on any subject under the Sun, and the power of the last of the old time Guilds is rapidly breaking down, and making doctors feel very insecure.Old school doctors, that is: those raised with IT, are going to change things beyond all recognition, once the last of the dinosaurs heads for retirement on the Jurassic/Cretaceous South coast!â (Where you will find a number of fading Wesselyites already, if you keep your eyes open.)All the best,S
I’d be happy for you to be Secretary of State for Health, Steve. Expanding A&E to do triage instead of a GP would be a great idea – they seem more clued up than the rest of the NHS. Obviously there would be problems with access etc but I’d support the basic principle. The trouble is that the general public don’t realize how bad the state of the NHS has become. They don’t realize that the various ghastly failings which are exposed from time to time are the norm rather than the exception. My wife follows various concerned doctors on Twitter and they are encouraging patients to complain a lot more than they do. People are scared to do so unfortunately.
Thanks for mentioning Blur. I will take a look at that. Do you have access to the WordPress forum? I had a problem getting my comments on Blogger sites to link back to my blog and they gave me some very helpful advice.
Many thanks for your comments.
Glad you like the idea of expanding A&E. Certainly seems stupid to leave the most important job to people with no equipment or support on hand. Even the paramedic service is better than the GP. I think there should be a clearing house site for difficult cases that individual doctors can’t understand, too. Crazy that governments complaining of people not getting back to work, haven’t insisted on this already: not even the media have suggested trying to get people back to work by curing them! Completely incredible when you think about it!I haven’t tried taking this up with WordPress, as I don’t really have time for blogging myself so it isn’t that important, but it ought to be easier to reply without having to log in to an account first.I used MaskMe for several years, before they ‘upgraded’ it to Blur. It certainly saved me an awful lot of hassle making up and remembering passwords. I also used many masked emails when signing petitions etc (you can also find a random postcode and zipcode generator too, if you google). This means that all the follow up spam from petitions you sign, comes back labelled ‘masked’, and you can filter it straight out.â The Blur ‘upgrade’ actually doesn’t do quite so much in the free version (doesn’t let you run it across multiple devices), but it’s cheap enough to chip in for the full version, and they deserve it really, for the service.Cheers.S
Thanks, and thanks for the heads up re Trudie Chalder. I’ll google her when I can and look forward to her ‘precise catalogue of the imaginary’ – brilliant expression and one that I’m going to creatively borrow (aka plagiarise!!) as often as possible 🙂 Dr Stone is probably very well meaning but I’m amazed that the journal of neurology accepted his ‘Bare Essentials’ paper … academically robust it ain’t.
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Collateral damage done to us includes gaslighting – we are induced to disbelieve our own reality.
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Gaslighting indeed. And neuros are not immune, especially when they’re told ‘Don’t believe all the physical diagnoses in notes’ by other neuros like Jon Stone. Um, it’s probably ok to question them, but to not believe them a priori? That’s also disbelieving reality. It also makes me wonder if Dr Stone realises that the central nervous system is a physical reality … *sigh*.
Brilliant article. Most people don’t seem to realise the ramifications of the ‘biopsychosocial’ model for ME, which then worsens the person’s health on bio, psycho and social grounds, as benefits are denied.
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OK, how about this? We all leave ‘feedback’ on Jon Stone’s site asking him to publically explain what causes ‘functional’ symptoms, what the physical mechanisms are for them and why he gives any credence to ‘conversion disorders’ when, in his literature, he states that they are a ‘relic from the Freudian era’. Most of the feedback he gets is positive, which means that his confirmation bias is being constantly reinforced. Maybe it’s time to change that.
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I’ve just posted the following on Jon Stone’s feedback page (via a pseudonym email address). It’s a long post and he may not publish it on his site as it won’t be ‘on message’ as far as his mind-set goes. But I’m sick to death of this whole psychobabble stuff – as are many people with rare conditions (that’s about 350 million of us, worldwide) so thought it was worth a shot. Here goes:
Follow Dr Jon Stone’s advice and always question the ‘functional’ diagnosis – just to be on the safe side.
In 2006 I was diagnosed with a rare neurological condition. Since then, when I am well enough, I have been campaigning for people with rare conditions (roughly 1 in 17 of us in the UK and 1 in 10 in the USA). Part of this work has involved looking into the barriers to diagnosis faced by many of us with rare conditions. Recently, in an unofficial piece of research, 12 people with rare conditions bought their medical records. The contents of their notes give cause for concern and may explain some of the reasons why the diagnosis of rare conditions can take such a long time.
In 10 cases there were comments in their notes recording either ‘functional symptoms’, ‘symptoms where there is no disease’, ‘non-organic symptoms’, ‘conversion disorder’, ‘psychogenic symptoms’, ‘psychological symptoms’, ‘dissociative disorder’, ‘illness behaviour’, ‘symptoms that result from somatization’, ‘medically unexplained symptoms’ or ‘hypochondriasis’ – or a combination of these. In all these cases either a neurologist or a psychiatrist had recorded either that ‘no further tests are necessary’ or that ‘no further tests are desirable’. Yet in 5 cases MRIs were ordered with the anticipation that the results would be ‘negative’ and so prove to the people concerned – and their GPs – that there was ‘nothing wrong with them’ or words to that effect. Comments were also recorded suggesting that no further consultation requests should be honoured and that the patients must be made to accept the ‘functional’ diagnoses.
In only 3 cases were the patients aware that these comments/diagnoses were in their notes prior to them buying their records. Once they had been successfully diagnosed with recognised bio-medical conditions these three patients then challenged the previous ‘functional’ (etc) diagnoses. In each case they were told that these were not formal diagnoses and that, therefore, there was no misdiagnosis. This makes a mockery of the misdiagnosis statistics.
In the case of the man whose notes stated that he had ‘hypochondriasis’ and ‘illness behaviour’ his diagnosis with Acromegaly came too late. Although he is now in the care of one of the world experts for this condition his life will be shortened because his treatment was delayed.
I doubt that the misdiagnosing of patients with ‘functional’ (etc) symptoms is limited to patients with rare conditions. Indeed the vestibular sites are full of such instances, as are the migraine sites. One man with severe balance problems was told his symptoms were likely to be ‘functional’ because they seemed to arise from more than one system in his body. As his consultant said ‘There are three body systems involved in good balance, not counting the brain, so that assumption is clearly nonsense.’ One woman was told that she probably had a ‘conversion disorder’ because, following a concussion, she became hypersensitive to solvent smells which often triggered migraines for her. As her consultant said ‘This makes no sense. Sensitivity to smells is a common feature in migraine. Where it is present it can help with the diagnosis – of migraine, that is.’ Even more bizarrely a child who developed migraine was told his symptoms arose from ‘somatization following trauma’. He didn’t need his consultant to tell him that he hadn’t experienced any trauma – other than being told that he was somehow creating the symptoms himself.
But, to return to rare conditions for a moment, there are wise words from Professor Grahame, a leading expert in Joint Hypermobility Syndrome (aka EDS): “There is a common tendency in medicine when faced with medically unexplained symptoms to assume that they are psychogenic in origin. This is a high-risk approach that can have disastrous consequences. The joint hypermobility syndrome (JHS) story is a good illustration of this.”
Likewise there are wise words from someone who has the same rare condition that I do: “The psychogenic angle is so dangerous. You can drive a person totally bonkers that way. It does a lot of harm. We need to stop buying it.”
I never bought it. I’m amazed so many people do. So follow the advice Dr Stone gives to his colleagues and always question any diagnosis that infers or assumes that physical symptoms are psychogenic – no matter which euphemisms are currently trendy.
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Nicely put, Pollymoyer,I’m one of the ones deprived of any real effort at investigation by a misdiagnosis of hypochondria–in my opinion, a malicious one, I believe was punishment for arguing with a shrink who behaved like a playground kid taking his ball home if people didn’t play his way.Stone was more polite: I didn’t get to see him, but had a brief go at email reasoning, from which he soon excused himself.I once had a quote on hypochondria from the DSM IV ( it’s paywalled so I couldn’t find it again). After describing the characteristics, the entry finished with a clear warning that this was a dodgy label to apply and should not be given until all other possibilities had been checked.My experience–backed up here, I’m sure–is that doctors jump for the hypochondria/somatic etc. âstamp, after the briefest possible effort at investigation. Considering most ‘consultations’ are done in a very few minutes and in a great rush, it seems like sheer luck that they successfully diagnose anything the patient doesn’t already know, at all. Nobody heeded the warning, either in the DSM, or in the NICE guidelines on the legal standing of the guidelines–which, contrary to popular belief, do not insist that doctors follow them.This should all be grounds for gross negligence claims, but there is nobody to make them for people who can barely manage to do anything at all for themselves through illness. I’ve not seen DSM 5, but I would not be surprised to see that the caveats against overdiagnosis of ‘somatic’ conditions, have gone.I’ve got a copy of the legal standing on the NICE guidelines, brief, somewhere (they took it off their site), but not on this phone.A legal challenge from the right law firm ought to be able to blow this whole psychobabble culture clean out of the water: it does not have a scientific or logical leg to stand on, but it, literally, gets away with mass psychological torture of the physically ill, decade in decade out!Good luck!
Hi Polly – Please look out for an email from me (as Leeds ME Network). Just saying in case it ends up in spam….
Yes, the NICE guidelines are supposed to be exactly that: guidelines. But – perhaps for fear of legal action – doctors are treating them like a strait-jacket. And as regards diagnosis, yes, I have found that the best thing to do is to diagnose myself online then gently suggest it to the GP (with all due deference) and hope he agrees.
Reblogged this on The Halflife of ME.
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