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The Non CFS 'CFS-ers'

Scarecrow

Revolting Peasant
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continued from this thread on ICD-10-CM

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?
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.
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.

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.
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.
Found the thread and study you were looing for. For ease, here's a link to the PDF.

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
 
Last edited:

*GG*

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continued from this thread on ICD-10-CM

Found the thread and study you were looing for. For ease, here's a link to the PDF.

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
So this explains when you see the Dr month after month with the same symptoms, those 8 mins should add up!

I don't blame them either, but think they should be putting those visits to better use!

I know my PCP was always sending me to another Dr, trying to figure out why I had a sore throat (ENT Drs), pain etc..I was very healthy before, so when I felt chronically ill, she knew something was wrong! You could also see the irratation of my throat, it's documented!

GG
 

alex3619

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All this tells us is is that GPs are extraordinarily bad at diagnosing ME/CFS.
I think this is a global problem. In particular I wonder even if a doctor has heard of PEM, can they distinguish it from post exercise fatigue? Clearly some can, and some can't, what about the rest? I suspect all definitions of ME run into this problem. The only solution is continuing medical education, particularly now we have at least two advances in the science that validate that PEM is not just post exercise fatigue.
 

Scarecrow

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So this explains when you see the Dr month after month with the same symptoms, those 8 mins should add up!

I don't blame them either, but think they should be putting those visits to better use!

I know my PCP was always sending me to another Dr, trying to figure out why I had a sore throat (ENT Drs), pain etc..I was very healthy before, so when I felt chronically ill, she knew something was wrong! You could also see the irratation of my throat, it's documented!
I did mention three factors as being important. One of them was expertise. Isn't that what the IOM are trying to address?
 

Scarecrow

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I think this is a global problem. In particular I wonder even if a doctor has heard of PEM, can they distinguish it from post exercise fatigue? Clearly some can, and some can't, what about the rest? I suspect all definitions of ME run into this problem. The only solution is continuing medical education, particularly now we have at least two advances in the science that validate that PEM is not just post exercise fatigue.
I agree that it's global. For me, the solution is a specialist referral after the GP has made a tentative diagnosis and screened out other likely conditions. Not that a specialist referral for all patients is in any way feasible currently - not nearly enough specialists.

Many, many people with ME also get post exercise fatigue in addition to PEM because of OI. Also, if Peter Rowe is correct, post exercise fatigue due to OI can look a lot like PEM, indeed probably is a type of PEM. This is also suggested by the work of Nancy Klimas and Connie Sol - exercise causing the autonomic nervous system to crash and then bringing down the immune system with it.
 

alex3619

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I am not sure OI fatigue should be classed the same as post exercise fatigue. The mechanism seems to be different. The issue is that not enough doctors differentiate here.

Its also the case that we GOT "specialists" in the UK fatigue clinics. Beware what you ask for. Until there is a scientifically justified way to train physicians to specialize in this we will often get physicians so far out of their depth that they become a problem not a help. When this happens ME will probably be brought into an existing specialty, whether its neurology, immunology or something else.
 

Scarecrow

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I am not sure OI fatigue should be classed the same as post exercise fatigue. The mechanism seems to be different. The issue is that not enough doctors differentiate here.
:thumbsup: I misunderstood.


Its also the case that we GOT "specialists" in the UK fatigue clinics. Beware what you ask for. Until there is a scientifically justified way to train physicians to specialize in this we will often get physicians so far out of their depth that they become a problem not a help. When this happens ME will probably be brought into an existing specialty, whether its neurology, immunology or something else.
Yes, I've been, I know. But the thread is about diagnosis not treatment.

At least the specialist clinics run tests that GPs won't. So there's an element of peace of mind because they rule out other commonly missed misdiagnoses. They will also assist with benefits and social care, if required. On the other hand, they pedal CBT and GET because NICE tells them to and - in my experience - they have a disturbing tendency to lie shamelessly to their patients (my own favourites being "Pacing is harmful" and "90% of patients attending this clinic recover").

Don't forgot that both Newcastle and St Barts are examples of these specialist clinics. I wouldn't mind a referral to Newcastle while St Barts would fill me with terror. They have both highlighted the same issue with GP diagnosis and they were fairly consistent in their findings. Significantly, they came to a similar conclusion.