Study evaluating NICE, Oxford, and Fukuda prevalence

M

Medfeb

Senior Member (Voting Rights)
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

BMC Med. 2011 Jul 28;9:91. doi: 10.1186/1741-7015-9-91.
Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care.
Nacul LC1, Lacerda EM, Pheby D, Campion P, Molokhia M, Fayyaz S, Leite JC, Poland F, Howe A, Drachler ML.
Author information

Abstract
BACKGROUND:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or chronic fatigue syndrome (CFS) has been used to name a range of chronic conditions characterized by extreme fatigue and other disabling symptoms. Attempts to estimate the burden of disease have been limited by selection bias, and by lack of diagnostic biomarkers and of agreed reproducible case definitions. We estimated the prevalence and incidence of ME/CFS in three regions in England, and discussed the implications of frequency statistics and the use of different case definitions for health and social care planning and for research.

METHODS:
We compared the clinical presentation, prevalence and incidence of ME/CFS based on a sample of 143,000 individuals aged 18 to 64 years, covered by primary care services in three regions of England. Case ascertainment involved: 1) electronic search for chronic fatigue cases; 2) direct questioning of general practitioners (GPs) on cases not previously identified by the search; and 3) clinical review of identified cases according to CDC-1994, Canadian and Epidemiological Case (ECD) Definitions. This enabled the identification of cases with high validity.

RESULTS:
The estimated minimum prevalence rate of ME/CFS was 0.2% for cases meeting any of the study case definitions, 0.19% for the CDC-1994 definition, 0.11% for the Canadian definition and 0.03% for the ECD. The overall estimated minimal yearly incidence was 0.015%. The highest rates were found in London and the lowest in East Yorkshire. All but one of the cases conforming to the Canadian criteria also met the CDC-1994 criteria, however presented higher prevalence and severity of symptoms.

CONCLUSIONS:
ME/CFS is not uncommon in England and represents a significant burden to patients and society. The number of people with chronic fatigue who do not meet specific criteria for ME/CFS is higher still. Both groups have high levels of need for service provision, including health and social care. We suggest combining the use of both the CDC-1994 and Canadian criteria for ascertainment of ME/CFS cases, alongside careful clinical phenotyping of study participants. This combination if used systematically will enable international comparisons, minimization of bias, and the identification and investigation of distinct sub-groups of patients with possibly distinct aetiologies and pathophysiologies, standing a better chance of translation into effective specific treatments.

PMID:
21794183
PMCID:
PMC3170215
DOI:
10.1186/1741-7015-9-91
[Indexed for MEDLINE]
Free PMC Article
Click to expand...
 
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.
All of the participants were diagnosed with CFS in accordance with the NICE guidelines (Turnbull et al., 2007) and assigned to CBT based on a clinical assessment. At pre-treatment assessment, all participants fulfilled the NICE guidelines for the CFS criteria (having fatigue for the last 4 months), 72.7% met the Oxford criteria and 52.6% of the participants met the CDC criteria.
Click to expand...
So participants seemed to be pre-selected by the NICE criteria as the PACE-trial did with the Oxford criteria.
 
Michiel Tack said:
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.
Click to expand...


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.
 
Michiel Tack said:
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.
Click to expand...

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.
 
Peter Trewhitt said:
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.
Click to expand...
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.
 
Medfeb said:
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.
Click to expand...

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.
 
Andy said:
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.
Click to expand...

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
 
Medfeb said:
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.
Click to expand...

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.
 
Last edited:
Medfeb said:
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.
Click to expand...
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.
 
Jonathan Edwards said:
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.
Click to expand...

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.​
 
dave30th said:
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.
Click to expand...

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'?
 
Doesn't Esther Crawley say she uses the NICE criteria for her research?

I understand the idea that this is supposed to be a first stage for GP's to decide ME is a possibility, and pass on for specialist diagnosis in theory. Trouble is, for a lot of us, it's all we get. Or if there is a next stage it's straight on to a bunch of therapists in a fatigue or IAPT clinic with the only doctor input being another GP.
 
Trish said:
Doesn't Esther Crawley say she uses the NICE criteria for her research?

I understand the idea that this is supposed to be a first stage for GP's to decide ME is a possibility, and pass on for specialist diagnosis in theory. Trouble is, for a lot of us, it's all we get. Or if there is a next stage it's straight on to a bunch of therapists in a fatigue or IAPT clinic with the only doctor input being another GP.
Click to expand...

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.
 
Jonathan Edwards said:
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.
Click to expand...

How about this one:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5939995/

And this one:
https://www.dovepress.com/pediatric...spectives-peer-reviewed-fulltext-article-PHMT
See table 1 - NICE is listed as one of the definitions of ME/CFS

And the SMILE trial of the Lightning Process only required 3 months of chronic fatigue.
https://adc.bmj.com/content/103/2/155

Edited to add missing link.

I found these by using the forum search for Crawley. I'm sure there are more.
 
You must log in or register to reply here.
Back
Top Bottom