Prof Peter White discouraging RSM Conference from using ICD-10
Royal Society of Medicine “Chronic Fatigue Syndrome” Conference 28 April 2008
Presentation: Professor Peter White, Bart’s and the London School of Medicine
What is Chronic Fatigue Syndrome and what is ME?
This unofficial transcript extract has been prepared by Suzy Chapman. Care has been taken in the preparation of this transcript though some errors and omissions may remain.
Transcript also available as Word doc here: RSM Transcript Prof Peter White
[Excerpt from first 6.00 minutes of presentation]
I’m going to try to define what Chronic Fatigue Syndrome is. By doing so, I’m going to review the ICD-10 criteria for the illness and see if they’re helpful. The answer will be, they are not helpful. I’m going to look at research criteria to see if they help us try and define this illness in the clinical aspect. But this meeting is about clinicians making the diagnosis and helping patients. And the answer is, the research criteria are pretty useless at defining the illness clinically. So we then come to the three clinical criteria at the end to see if they’re useful and two of them actually do have help to us; so the good news is, after some attrition as we skim through ICD-10 research criteria, there will be some good news at the end, where there are two particular clinical criteria: the NICE Guidelines criteria and the Royal College Of Paediatrics and Child Health criteria I would commend to you, as clinicians, as a useful way of starting the process of diagnosis and management to your patients.
But nothing is simple, as Albert Einstein said. You’ve got to keep things simple but no simpler in life, so there is a bit of a twist in the tail at the end of CFS, where we have the Wessely/White debate – is there one functional somatic syndrome, is CFS part of actually a wider, one functional somatic syndrome that includes things like IBS, Fibromyalgia and things like that, or is it the opposite polar extreme: that chronic fatigue syndrome is more than one illness – it’s actually heterogeneous. So I’m going to just touch on that. And at the end of my talk, I’m going to try and perhaps answer an even more difficult question: what is ME? And I’m going to go back to the original descriptions of ME, back to the 1950s to help us and also make the point, which is another important clinical point, that I’m going to make this morning – that is, the diagnostic labels we choose to use influence our patients and influence prognosis. If I have time – I may not.
I’m going to make the broader point – patients come in and they say to us, “What is ME? Does it really exist?” Or if it’s CFS, “Does it really exist?” The answer is, yes, it does exist and “Is it physical or mental?” And unfortunately we live in a Cartesian world of dualism: it’s either mental or it’s physical. The reality, of course, is, anyone with an understanding of neuroscience will know, as we will in this audience, actually it’s both: physical and mental, and you cannot divide the mind from the body. So let’s see, we’ll start with “The Mystery”. There’s no doubt this is a mysterious illness, as John Scadding has already implied, and we do have a problem with what we call it. [Reads from media article] “Once dismissed as ‘yuppie flu,’ chronic fatigue is increasingly recognised as a debilitating disease that affects millions.”
[Montage of CFS and ME press articles]
And one of our problems is: labels do count. So “Yuppie Flu”? If you were told you that you suffered from “Yuppie Flu”, how would you feel? So we do have a problem in how we label. And also it’s a problem that we have partial responsibility for, as doctors and health care professionals. From another magazine: “If your doctor says it’s all in the mind…”, Would you like to be told it’s all in your mind? “…don’t assume you’re just neurotic.” Notice the word “just”. “You may be suffering from one of the ‘new’ illnesses that doctors are still having difficulty diagnosing.” And as you’ll see from my talk, today, we are still struggling to make the diagnoses of Chronic fatigue syndrome and ME. So we are partially responsible for what is going on.
So, does the ICD-10 help us, unfortunately not, there at least five ways (in fact there are probably more than five) of classifying Chronic fatigue syndrome using the ICD-10 criteria.
What are they? We start off well: Myalgic encephalomyelitis is in the neurology chapter of ICD-10. It’s main title is “Post viral fatigue syndrome” and subsumed under that is “Benign myalgic encephalomyelitis” and helpfully, “Chronic fatigue syndrome, postviral”.
G93.3 in Neurology chapter of ICD-10
Postviral fatigue syndrome,
benign myalgic encephalomyelitis
Chronic fatigue syndrome, postviral
So it starts off well. You get a virally triggered chronic fatigue syndrome – that’s your diagnosis. Or is it? What if it’s not postviral? What if the viral illness is not a clear trigger for the illness? Well, you’ve got alternatives: in the Mental Health Chapter, you’ve got Neurasthenia, which of course was talked about back in the last, and previous to last century.
F48 in ICD-10 mental disorders chapter
Excludes postviral fatigue syndrome
Includes fatigue syndrome
Helpfully, it excludes postviral fatigue syndrome but includes “Fatigue syndrome”. So if you think someone’s got a fatigue syndrome that’s not triggered by a virus, should you be using this diagnosis? If not, one of these three: if you think that somehow, psychological factors have some role to play in your patient’s diagnosis or in their illness, should you use one of these diagnoses, including some beautiful, historical, interesting syndromes such as Effort syndrome, Da Costa syndrome, whatever “Neurocirculatory asthenia” was in those days.
Other ways to classify CFS
F45.1 Undifferentiated somatoform disorder
F45.3 Somatoform autonomic dysfunction
Da Costa syndrome,
F45.9 Somatoform disorder, unspecified
But it gets actually worse than that because that’s five possible diagnoses you can use and the trouble with these diagnoses is, you have to somehow guess that psychological factors have an important role to play in their aetiology – how on earth can you guess that when someone may be presenting five years after the illness started? So difficult to make these diagnostic labels.
But actually, if you are more neutral – you don’t know whether it’s physical or mental, you want to use a more neutral term – well you have got something you can use in ICD-10, in the “R Chapter” – “Chronic fatigue, unspecified” which helpfully includes [R53.82] Chronic fatigue syndrome NOS. You could actually use that if you don’t want to jump off the fence as to whether this is physical or mental in the dualistic mood.
It’s confusing isn’t it? And some of my junior staff would suggest that when you get this confused, as I am, over ICD 10, you are always left with a diagnosis – a self-diagnosis, of course, of senile dementia, sorry, senile, senior – dementia comes later. [Laughter]
Other ways to classify CFS
R53.82 Chronic fatigue, unspecified
Chronic fatigue syndrome NOS
R54 Senile asthenia!
So ICD-10 is not helpful and I would not suggest, as clinicians, you use ICD-10 criteria.
They really need sorting out; and they will be in due course, God willing…