Study evaluating NICE, Oxford, and Fukuda prevalence

I think I remember reading a UK study that characterized patients by NICE, Oxford, and Fukuda and gave the prevalence of each. Does anyone remember that study and if so, could you share the study name or link?

Thanks in advance

 

Not exactly what you are looking for, but this is probably the best UK study of prevalence

https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91

 

Perhaps it was this one?

Flo E, Chalder T. Prevalence and predictors of recovery from chronic fatigue syndrome in a routine clinical practice. Behav Res Ther. 2014 Dec;63:1-8. doi: 10.1016/j.brat.2014.08.013.

So participants seemed to be pre-selected by the NICE criteria as the PACE-trial did with the Oxford criteria.

 

That's it. Exactly what I needed. Thank you!

When I read this the first time, I was surprised that fewer patients met Oxford than NICE as I had assumed it would be broader. Perhaps an artifact of selecting by NICE first.

 

I too am surprised that not all who meet the NICE criteria necessarily fit the Oxford criteria.

Presumably if the sample had been preselected on the basis of the Oxford criteria, the reverse be also true, that not all the sample fit the NICE criteria.

It is so important that the new NICE guidelines abandon their old criteria, and that studies using either the Oxford criteria or the old NICE are consigned to research landfill.

 

Yes but NICE 'criteria' should never be used for research anyway. Given that they are there to help medical staff diagnose potential ME then they should be broader than research criteria, though due to some researchers having used NICE in isolation previously as a research selection criteria perhaps a note needs to be added to the new guidelines warning against this practice.

 

I think that is inherent in the way it was done and does not imply one is broader than the other. The Nacul study is much more likely to give useful comparisons but I am not sure which 3 criteria they quoted.

 

My bigger concern with NICE is a question on how it defines PEM. If I understand correctly, NICE says the disease is characterized by "post-exertional malaise and/or fatigue" but then lists the worsening of symptoms following exertion as optional. Seems nonsensical to me

 

Maybe note that this study is not about NICE, Oxford and Fukuda prevalence. It is about 'prevalence' of recovery. The title is confusing. Being tertiary referral centre it is not in a position to assess prevalence of the illness by any criteria. Being a CBT clinic it will be taking an extremely skewed group o f patients anyway.

 

Are there actually any NICE diagnostic criteria? The paper talks of referral in line with guidelines but the guidelines do not give diagnostic criteria as far as I can see. Diagnostic criteria are by and large irrelevant to clinical management.

The guidelines talk of:
'Healthcare professionals should consider the possibility of CFS/ME if a person has'
That is not saying that these features constitute diagnostic criteria - far from it.

Remember that the guidelines have to cover everyone who falls within a ball park, for management purposes. Whether or not all technically fit some set of criteria is not the clinical problem. The problem is how to make sensible decisions for everyone.

 

yes, it lists PEM specifically as a characteristic of the fatigue. Then exacerbation after activity is one of the ten symptoms listed, of which at least one must be present. So PEM is required but exacerbation after activity is optional. Very ambiguous and confusing. No one ever seems to have explained this--including all those who found these 2007 guidelines fit for purpose.

 

I'm looking at the following in the "presentation" section of the full guidelines
Section 1.2.1.2 states

"Healthcare professionals should consider the possibility of CFS/ME if a person has:
fatigue with all of the following features: a) new or had a specific onset (that is, it is not lifelong), b)persistent and/or recurrent unexplained by other conditions c) has resulted in a substantial reduction in activity level d) characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)
and one or more of the following symptoms:
... ​

This section then lists 10 different symptoms of which one is "physical or mental exertion makes symptoms worse"

​

Then section 1.3.1.3 states

The diagnosis of CFS/ME should be reconsidered if none of the following key features are present: a) post-exertional fatigue or malaise, b) cognitive difficulties, c) sleep disturbance, d) chronic pain.​

 

I don't see this as a big issue because, as I read it, this is not a set of diagnostic criteria and nobody would expect it to be a set of diagnostic criteria because clinical care does not work on that basis. It says that the professional 'should consider the possibility of CFS/ME'. That is all. The guidelines are principally intended for non-specialists who would expect to 'consider the possibility' and make a judgement as to whether to get specialist help or not based on all sorts of considerations. Medicine does not work by putting people into diagnostic pigeonholes. That is useful for research but not the clinic.

As it stands it is pretty silly to ask for one or more extra features when one of the features is already required - so everyone who passes the first threshold automatically passes the second. but I take this to be just clumsy wording because it is not going to have any effect on management. The professional will 'consider the possibility'. The second list gives some extra idea of what tends to go with ME/CFS and may be useful in that way. It looks like the sort of result you are almost bound to get with a committee where many members have muddled ideas about what they are trying to decide about.

Has anyone ever actually used this list as 'diagnostic criteria'?

 

I wouldn't be surprised if Dr Crawley thought these were 'diagnostic criteria'.

I appreciate that the handling of people, once the diagnosis has been 'considered' may be grim. But I am doubtful that that has anything to do with these criteria for considering the diagnosis being deficient. They require PEM. That might actually be too strong. My suspicion is that the real misinformation is in Royal College of General Practitioner educational material.

 

The only reference to 'NICE criteria' in relation to ME/CFS that comes up for me on Google is a comment by the ME Association on the NICE review. If papers quoted 'NICE criteria' I would have thought that would flag up.

 

This seems to be Crawley and Loades's own diagnostic checklist only loosely based on NICE guidelines.

 

I have never before heard her referred to as the missing link.