continued from this thread on ICD-10-CM
All this tells us is is that GPs are extraordinarily bad at diagnosing ME/CFS. It has nothing to do with Oxford or NICE - or any other criteria. They just don't have the expertise, aren't encouraged to run sufficient tests to exclude other conditions, and don't have the time to assess their patients. What do you expect from 8 minute appointments? I don't blame them.
The reason that Fukuda is used is explained early on in the paper.
Also this study tells a similar story but in that clinic - St Barts - they were more likely to offer an alternative psychiatric diagnosis!
JRSM Short Rep. 2012 Jan; 3(1): 4.
Published online 2012 Jan 12. doi: 10.1258/shorts.2011.011127
PMCID: PMC3269106
Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist service: service evaluation survey
Anoop Devasahayam,1 Tara Lawn,2 Maurice Murphy,3 and Peter D White4
But still, those patients not meeting SEID or ME criteria might be left in a worse position than now.
I think this is a valid concern and needs to be watched. In particular this arises because of a policy of not running tests on CFS patients in the UK and in medical jurisdictions in which they have influence. So misdagnosis is probably rife. My own estimate is that the Oxford defintiion might have a misdiagnosis rate of between 60 to 70%, though there is no way to be sure until we have diagnostic biomarkers. That figure is likely to get worse if ME is clearly separated out.
But Oxford CFS is not, or at least should not, be used for a clinical diagnosis. PEM is a requirement for NICE criteria so, if anything - all other things being equal - there should be a lower misdiagnosis rate in the UK than in the US.
Yet the claimed misdiagnosis rate in the UK is about 40% based on a study a few years back. This used Oxford as a benchmark if I recall correctly, which Jason has shown can misdiagnose depression or anxiety as CFS at about a 60% rate.
I also do not argue that the US Fukuda gets it right. I just have little information to give me even an approximate idea as to what the misdiagnosis rate is. Byron Hyde's claim for about 90% misdiagnosis has nothing in the way of formal studies to back it up, but does have to be taken into account.
Do you have a reference? Using Oxford as a benchmark to what other criteria?
No, I'm not arguing that either. I have to apologise but it's just that I am on a bit of a mission regarding the Oxford criteria when I see the suggestion that they are being used clinically in the UK.I also do not argue that the US Fukuda gets it right. I just have little information to give me even an approximate idea as to what the misdiagnosis rate is. Byron Hyde's claim for about 90% misdiagnosis has nothing in the way of formal studies to back it up, but does have to be taken into account.
Yes, it's a concern when you see them used in research (to paraphrase, you've no idea if you've got apples, bananas or an apple-banana) but the clinical guidelines ought to identify ME patients with a far greater accuracy. In my own experience of being referred to specialists more than twenty years apart (the first time before Oxford criteria were published), they are not assessing you against anything as simplistic as Oxford. And I'm talking about one of the centres that took part in PACE (Edinburgh).
All the same, I'd be interested to see a comparison of patients referred to - and diagnosis confirmed by - Kings (Chalder-tastic) and Newcastle (Newton). That may well be revealing.
Found the thread and study you were looing for. For ease, here's a link to the PDF.I am looking. This was a UK study a few years back, and it was looking at clinically diagnosed patients. Its possible I misrecalled the details, so I am looking for the study. It has been cited again and again on PR. Its the basis for the claim the misdiagnosis rate in the UK is about 40%, which I have seen again and again. Its been a few years since I read it though.
All this tells us is is that GPs are extraordinarily bad at diagnosing ME/CFS. It has nothing to do with Oxford or NICE - or any other criteria. They just don't have the expertise, aren't encouraged to run sufficient tests to exclude other conditions, and don't have the time to assess their patients. What do you expect from 8 minute appointments? I don't blame them.
The reason that Fukuda is used is explained early on in the paper.
Also this study tells a similar story but in that clinic - St Barts - they were more likely to offer an alternative psychiatric diagnosis!
JRSM Short Rep. 2012 Jan; 3(1): 4.
Published online 2012 Jan 12. doi: 10.1258/shorts.2011.011127
PMCID: PMC3269106
Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist service: service evaluation survey
Anoop Devasahayam,1 Tara Lawn,2 Maurice Murphy,3 and Peter D White4
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