Category: MUS

Keep Watching

‘Somatoform disorders’ have reared their heads in the ME-related news recently. First there was the announcement that one of the control groups for the upcoming and eagerly anticipated US National Institutes of Health (NIH) study of post-infectious CFS would be people with ‘functional movement disorder’, a strange choice which has made a lot of ME patients feel uneasy. The NIH explained: “Functional Movement Disorder was chosen to contrast post-infectious ME/CFS patients with a very well-studied group of patients with clear psychological illness with neurological presentation.”

But why not compare us with, say, AIDS or MS patients, people have asked? Why choose these ‘functional’ patients? It is difficult to avoid the suspicion that the NIH may be secretly looking for similarities rather than contrasts between people with ME/CFS  and those with this so-called ‘functional’ disorder. And if such similarities are found, what then?

There is, after all, no proof that any condition is ‘functional’ or ‘somatoform’ or ‘psychogenic’ or whatever you want to call it – as Doctor Speedy explains here. These diagnoses are based entirely on the opinion – and in many cases, as we shall see, the presumption – of the doctor. When it comes to such so-called ‘psychogenic’ conditions, otherwise known as ‘medically unexplained symptoms’, evidence-based medicine seems to go out of the window.

So these poor people with movement disorders may have conditions which are no more ‘psychogenic’ than ME is, yet according to the NIH they have ‘clear psychological illness’. So if we have similarities with such patients, what does that mean for us in the eyes of the NIH?

Perhaps I am being unduly suspicious here. There is plenty that seems to be good about the NIH study. It is large scale, it is studying post-infectious CFS (i.e. patients whose CFS started with an infection) and there is going to be a particular focus on the cardinal symptom of post exertional malaise. Continue reading “Keep Watching”

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”