Probing the Holes in MUS

This is the second in a new series of posts about medically unexplained symptoms (MUS). The first of these, A Morass of MUS, appeared last time. However, I first looked at medically unexplained symptoms over two years ago in a post called Medically Unexplained Assumptions. In this, I travelled all the way back to the nineteenth century (just like a character from Netflix) to take a look at the case of the unfortunate Mr Le Log, who suffered memory loss, paralysis and seizures after being knocked to the ground by a speeding carriage.

The accident was unfortunate of course but what made things worse for Le Log was that he had no external head injuries. He most likely had internal ones, but at that time medical science did not recognise the existence of such injuries as they didn’t have the technology to detect them. As far as the doctor who examined him was concerned, therefore, there couldn’t possibly be any physical reason for Le Log’s symptoms of memory loss etc. The doctor could only conclude that they were the result of ‘hysteria’.

In the many years since then, similar assumptions have been made about many other presentations of symptoms, such as those relating to epilepsy, multiple sclerosis and Parkinsons disease, to name but a few, yet subsequent advances in technology have revealed that these conditions too are really physical in nature and have nothing to do with ‘hysteria’ at all.

The habit of assuming that any condition which is not understood by doctors  must be a rooted in mental health continues to this day, however. It has been shown to be wrong over and over again, and you would have thought that gradually, over the years, it would have fallen into disuse. But no. The medical profession continue to insist that they already know everything there is to know about illness, so any set of symptoms they don’t understand can’t possibly be a ‘proper’ disease – this in spite of the fact that they really know they don’t know everything, and are happy enough to admit this in other contexts.

The word ‘hysterical’ is rarely used these days, but plenty of other names have come along to replace it in describing such conditions: medically unexplained symptoms (MUS), which we are using here, is one of them, as are the terms ‘functional‘ and ‘somatised’. ‘Functional’ is especially misleading, I think, as it sounds like it is describing a physical fault in a system. (You could almost think that doctors were deliberately setting out to mislead their patients…)

Far from falling into disuse, these terms seem to be gaining in popularity at the moment. As I mentioned last time, up to 45% of GP appointments and half of all new hospital visits are now considered to be due to MUS. This really is an extraordinarily large number, and new MUS services are being encouraged into existence to deal with it all. The IAPT (Improving Access to Psychological Therapies) scheme, originally intended to address anxiety and depression, is now being extended to deal with MUS (and long term conditions). Nimnuan, Wessely, and Hotopf, authors of the paper “Medically Unexplained Symptoms -an epidemiological study in seven specialties” which seems to have been the source of the ‘50% of hospital visits’ figure, announce rather grandly: “It is now time to acknowledge that the management of medically unexplained symptoms is one of the important tasks facing the specialist in internal medicine – indeed, in some clinics, it constitutes the majority of the work.”

Is all this really true? Is the vast mountain of MUS that Wessely et al have brought to our attention real? Sir Simon Wessely’s presence amongst the authors of the ‘seven specialties’ paper was bound to increase my doubts about this, especially bearing in mind his favourable opinion of the calamitous PACE trial. So I was interested to take a look at how he and his colleagues arrived at their figures for the prevalence of MUS .

I found I had a number of concerns:

“Medically unexplained symptoms were defined as any current principal somatic complaint reported by patients for which no definite medical diagnosis could be found by physical examination and appropriate investigation… The physician’s opinion was determined by the final diagnosis stated in the clinical case notes. If the physicians gave a diagnosis of “functional,” or continued to defer the diagnosis because of no detected abnormality, we considered these as indicating that the symptoms were medically unexplained… Case notes were reviewed to ascertain the final diagnosis approx three months after the initial visit.”

So in other words, if the doctor hasn’t come up with an explanation for a symptom in three months, then it is officially “medically unexplained” as far as this research is concerned. The problem for me here is that, in my experience, most diagnoses take longer than three months to obtain, so this three month cut-off seems unreasonable and likely to exaggerate the extent of the MUS problem.

  • The researchers developed a ‘system review questionnaire’ for use in the study but I haven’t been able to find it online. They describe it as follows:

“It consists of 11 main symptoms, which correspond to 13 recognised functional somatic syndromes, with 25 additional symptoms, including somatic symptoms, sleep, and psychological complaints. A total of 27 individual somatic symptoms were enquired about.“

I don’t find that all that easy to interpret, so it’s a shame we don’t have a copy of the questionnaire. But the impression I get is that if a patient has at least one of those 27 individual somatic symptoms which has not been ‘explained’ by the doctor by the time the 3 months are up, then they will be categorised as having medically unexplained symptoms. In my opinion, however, it is a natural part of the human condition to have one or two aches and pains and other bodily malfunctions of unknown origin at any one time. So it seems to me that once again these figures will be inflated. (If you would like to take a look at this for yourself and see if you think I am representing it correctly, then please do so. The full paper is freely available online.)

  • As quoted above, the 11 “main symptoms“ correspond to “13 recognised functional somatic syndromes”. Not all of these are named in the paper but three of them are mentioned in the introduction:  IBS, fibromyalgia, and – you guessed it –  CFS. Well the World Health Organisation classes IBS as ‘a disease of the intestines’, and fibromyalgia as a ‘soft tissue disorder’. They have nothing to say about CFS but myalgic encephalomyelitis is a classed as a neurological condition of course and as the Department of Health apparently believes ME and CFS to be one and the same, a strong case could be made for CFS to be also classed as neurological. I can only presume that a patient presenting with the symptoms of any one of the ’13 recognised functional somatic syndromes’ mentioned would be categorised as ‘unexplained’ by the researchers. However, as the three ‘syndromes’ mentioned are in fact officially recognised as ‘somatic’ (ie physical) conditions, a case could be made that once again the number of patients with MUS are being inflated – and we haven’t even looked at the remaining so called ‘functional somatic syndromes’ yet. The chances are that some of those aren’t really ‘functional’ either. Is it reasonable of the government to recognise medical conditions as physical yet at the same time class them as MUS in the supporting statistics for a major initiative to expand services for such conditions? I don’t think it is.

So where does this leave us exactly? While this isn’t all as clear as I would like it to be, I feel there’s enough here to place a big question mark against these figures. If I was relying on them to support a substantial government initiative, I think I’d want to take a very good look at them first. Likewise the supporting figures for primary care. Has anyone done so? I wonder. They may well have simply relied on peer review to validate the research, but that didn’t work so well for PACE, did it?

While we’re on the subject of diagnosis: last time, I drew attention to some advice for GPs which seemed to suggest they should place undue focus on the mental health of patients presenting with physical symptoms in order not to miss any cases of MUS. If you’ve read the second of my original posts on MUS, ‘Unexplained, Misdiagnosed, Untreated‘, you’ll also know that MUS has been a substantial factor in the misdiagnosis of rare conditions, sometimes causing catastrophic delays in treatment. But there are also other concerns, most notably a gaping logistical gap which appears to lie at the very centre of the MUS strategy as it is described in the Guidelines for Commissioners (the very document which, supposedly, is supposed to kickstart the new range of services for MUS into action).

As I mentioned last time, MUS are described in these guidelines as: ‘bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology’. A similar definition was used by Wessely et al in their paper above. All this may seem reasonable enough at first glance, but if you think about it more carefully, you might start to wonder ‘how sufficient is ‘sufficient’ and ‘how adequate is ‘adequate’? As far as I can tell, the guidelines give no guidance on that. They do however warn against the danger of over-investigation. They say:

“Patients are often subjected to repeated diagnostic investigations, and unnecessary and costly referrals and interventions”

and

“Doctors can cause harm by pursuing inappropriate investigations in their efforts to discover the cause of symptoms. Such procedures can exacerbate anxiety. Over-investigation may cause unnecessary damage to healthy tissues and lead to over-treatment, including unknecessary surgery, with all its complications, and in extreme cases more invasive treatments such as urinary catheters and tube feeding, of various types. Doctors may also prescribe unnecessary medication that can lead to side effects, and addiction.”

Forgive me, but that last paragraph reads like a text book example of catastrophising, something I am led to believe is more typical of a MUS patient than a set of NHS guidelines. I suppose a doctor would explain it as follows: “I’m sorry Mr Smith but it’s really best if we don’t give you a gastroscopy to investigate your stomach pains or you’re very likely to end up in bed with several organs accidentally removed, being drip fed unnecessary medication. What would you like us to give you instead to help with your constant agonising pain: CBT or mindfulness?”

I’m not sure this is really striking a realistic balance between ‘adequate examination‘ and ‘over-investigation’. It’s more like freezing to death for fear of catching fire if you light a match.

The truth is that the more adequate the examination, the more likely it is to find sufficient pathology if it is present. But the guidelines stress again and again the need for less investigation. Is there not a danger of an enormous void opening up here, a void into which the physically ill may fall? Those whose pathology is overlooked by tests which turn out not to have been so adequate after all? Always assuming, of course, that they even managed to get a test. ‘Repeated tests’ seem to be especially frowned upon by the guidelines, so if you’ve been tested before, you may not get another chance. The impression given, rightly or wrongly, is that the NHS will no longer cater for patients who develop pathology for which they’ve previously been tested. Unless you want CBT of course, in which case your brand new local MUS clinic will be happy to help.

This is especially concerning in the light of the guidelines’ acceptance that ‘MUS may be caused by physiological disturbance, emotional problems or pathological conditions which have not yet been diagnosed’. (My italics.) For if that is indeed the case, there’s a problem, isn’t there? With all this desire to avoid investigation, how are these conditions which have not yet been diagnosed going to get diagnosed – especially once a patient has been judged to have MUS? I can find no answer to this important question in the guidelines. But it is a life-threatening question and surely one which requires an answer….

I’d like to complete this post with a brief overview of the current situation, as regards both MUS and IAPT. The underlying principles behind the original IAPT scheme seem to me to be praiseworthy: delivering therapies for mental health problems such as anxiety and depression which previously all too often went untreated. There are concerns, however, especially regarding the expansion of IAPT to include MUS and long term conditions. The official guide to this new ‘care pathway’, for instance, cites CFS as a MUS condition, repeating the error from the ‘seven specialties’ paper but this time in a government document; while IAPT as a whole is also under scrutiny following an audit by Michael J Scott which suggests that the therapies used (principally CBT) come nowhere near achieving the 50% curative rate which is claimed for them. This concern is covered in detail in the latest issue of the Journal of Health Psychology (ed David F Marks). 

As for MUS, if we stand back and look at the overall picture of that, is there even greater cause for concern? Not only must we have the same worries about the efficacy of the therapies, surely questions must be asked sooner or later about the vast numbers which are supposed to be affected by this phenomenon and the effect on the diagnosis of physical/somatic conditions if undue emphasis is placed on it.

Put in a single sentence, the question is this: do we have a situation where a massive new initiative is being rolled out to promote therapies with exaggerated efficacy for the purpose of combating an imaginary epidemic, at the same time encouraging doctors to overlook and under-investigate genuine pathologies?

Only asking…

 

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Unexplained, Misdiagnosed, Untreated

In my previous post I discussed what seems to have been a grand tradition in medicine, dating back to at least the 19th century, of assuming that any set of symptoms which is not understood or does not fit the template of an acknowledged illness must be psychological in origin. This seems to be based on the premise that everything physical is fully understood by doctors. So if a set of symptoms are ‘medically unexplained’ they can only be the result of some kind of faulty thinking on the part of the patient.

If this kind of logic had been left behind in Victorian times, it might have been thought to be quaint and perhaps even amusing. But the fact that it seems to not only survive but positively flourish in the present day is beyond a joke.

For the fact is that not everything physical is by any means understood. It never has been and it most probably never will be. Medicine is constantly evolving. More is being learned all the time. This is a good thing. So conditions that were previously dismissed as psychological in origin, such as epilepsy, Parkinsons, multiple sclerosis, even stomach ulcers for goodness’ sake, have gradually been understood to have a physical basis. And new advances in genomics and computer simulation – to name but two evolving fields – will no doubt lead to further such progress.

So if you ask yourself “are all physical illnesses fully understood even today?” you should only have to think for a moment to answer “no – of course not”.

So why is the medical profession still acting as if they are? Why are patients with symptoms that aren’t understood still automatically passed on to psychiatrists?

As I wrote that earlier post, it seemed to me that people with ME/CFS, dismissed as we so often are (in spite of evidence to the contrary) as people who are out of condition due to an irrational fear of exercise, have become the unwilling recipients of this grand tradition of blaming the patient. I was aware that others are dismissed in the same way of course: those with fibromyalgia and Gulf War Syndrome for instance. And I’m sure I’d have thought of a lot more if I’d put my mind to it, which – to be honest – I didn’t. I’m afraid most of us who are chronically ill are guilty, to some extent, of knowing a lot more about our own illness than we do about other people’s. So it wasn’t until I read the comments which people kindly left on the previous post and followed up a few leads they gave me that I realized the full extent to which the ‘medically unexplained symptoms’ (MUS) industry is flourishing in the present day. It seems that there is not so much a niggling problem with these ‘imaginary illnesses’ as a veritable plague of them. If you believe what some health professionals say – and I shall share what is said in a moment – there are more ‘imaginary illnesses’ than there are real ones. Continue reading “Unexplained, Misdiagnosed, Untreated”

Medically Unexplained Assumptions

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’. Continue reading “Medically Unexplained Assumptions”