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Health services research Equity of access to specialist ME/CFS services in England

Ember

Senior Member
Messages
2,115
I'm not saying you can't, but the Nacul et al. study did not compare the NICE Criteria defined patient cohorts with either of these research definitions, did it?
I'm not aware of any prevalence studies using the NICE criteria. But in any case, the NICE criteria in themselves may describe little more than chronic fatigue. Though they would seem to require “post-exertional malaise / fatigue,” in fact, they make even “general malaise or ‘flu-like’ symptoms” optional. As a result, they actually require only “a substantial reduction in activity level characterised by...fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)" – plus at least one other symptom, possibly insomnia.
And remember: CBT and GET are NOT recommended for those in the severe category. And where they are applied it is recommended that they are personally tailored. But everyone has the right to say 'no' without their decision affecting them negatively.
When I was using GET, I wasn't yet in the severe category. I would likely have stayed out of that category too had I been advised to pace myself rather than to exercise. I had been diagnosed with CFS, and I didn't know enough at the time to request that my treatment be personally tailored. I was so motivated to get well, that I followed my treatment instructions as best I could, despite my repeated relapses.
But you are NOT going to get NICE to shift their stance until someone reports far better scientific or medical evidence - that is SPECIFIC enough and big enough - to usurp or sit alongside the GET CBT and Activity Management principal recommendations....

Outside of the PACE Trial I think those who can should focus their funding on coming up with some alternatives or complements to the two therapies above.
At issue here is which definition(s) will be used to research alternative therapies. According to the ICC authors, "It is imperative that research for ME be carried out on patients who actually have ME:"
When advances in scientific technology are applied to patients who meet the more specific case definition of the ICC for ME, the current urgent need for identifying and confirming specific biopathological mechanisms and biomarkers will be facilitated, and our improved understanding of the pathophysiology can then be directed towards enhancing treatment efficacy.
If only CFS cohorts are used, on the other hand, treatment results can't be assumed to apply to patients with ME.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Morning :)

I'm not aware of any prevalence studies using the NICE criteria. But in any case, the NICE criteria in themselves may describe little more than chronic fatigue.

There aren't. And you know what? Maybe when the review next year they will take Nacul into account, but at least they are not reported the kind of range that we have seen in the paper at the start of this thread!! 2.6% would be outrageous IMO and I really do not know why Crawley and those handful of others even bother referring to it - let alone making headlines out of it.

The NICE range is far, far, far more realistic. And I think that even you would agree with that ;) Trouble is that NICE cannot ensure that everyone is applying even their own Guideline in the way it was intended, or that even if it were to be applied - those criteria would be enough to produce such a prevalence.

IN FACT this is a MAJOR flaw with all epidemiology. Whatever the study, whatever the cohort, whatever the criteria. When based on subjectively reported symptoms and patient history (and exclusionary tests - even exclusionary tests) - you are not going to generate the kind of results the study would purport in real life.

I shall come back on your other points Ember. I must rest. The munchkins are here in a couple of hours :thumbsup:
 

Ember

Senior Member
Messages
2,115
The NICE range is far, far, far more realistic.
Perhaps you could pursue this quotation from the ICC Panel's response. It seems to refer to a prevalence study using the Oxford criteria in the UK: “The increased estimates of CFS from 0.24% (Fukuda) to 2.54% (Reeves, USA) and 2.6% (UK) confirm that the Reeves and Oxford criteria select patient sets that are approximately ten times larger and more inclusive than those selected by the Fukuda criteria [7].”

Indeed two studies reported last year finding that two specialist centres reviewed their referrals over a period and determined that respectively 40 and 50% of patients assessed at the time did not have the suspected condition and were referred elsewhere hopefully for more appropriate diagnosis and relevant treatment.
The Collins et al. study fails to confirm those numbers. It reports that “91.9% (IQR 76.5%, 100.0%) of adults assessed were diagnosed with CFS/ME:”
CFS/ME service coverage in England

In total, 12/152 PCTs in England, representing a population of 2.08 million adults, did not commission a specialist CFS/ME service in 2010. There was a sixfold variation in service provision between the specialist CFS/ME services, with assessment rates varying from 0.09 to 0.55 assessments per 1000 adults per year (table 1, figure 2). The median assessment rate was 0.25 per 1000 adults per year, interquartile range (IQR) 0.17 to 0.35 per 1000 adults per year. Approximately 11.85 million adults lived in the 40 PCTs in the bottom quartile of assessment rates (overall rate=0.14 per 1000 adults per year); 6.33 million adults lived in the 25 PCTs in the top quartile of assessment rates (overall rate=0.45 assessments per 1000 adults per year). The median proportion of adults assessed out of those referred was 92.2% (IQR 81.4%, 100.0%). The median proportion of adults diagnosed with CFS/ME at assessment was 91.9% (IQR 76.5%, 100.0%). These proportions varied considerably between services: range 33–100% for assessments as a proportion of referrals and range 60–100% for diagnoses as a proportion of assessments. The four services with the lowest proportion of assessments were in the bottom quartile of assessment rates.

The median assessment rate in 2010 was 0.25 (IQR 0.17, 0.33) per 1000 adults. In the same year, the median referral rate was 0.30 (IQR 0.22, 0.36) per 1000 adults, and the rate of confirmed CFS/ME diagnoses was 0.20 (IQR 0.16, 0.24) per 1000 adults. Applying these rates to the adult population covered by specialist CFS/ME services (35.9 million people) indicates that each year in England ∼11,000 adults are referred, ∼9000 are assessed and ∼7000 adults receive a diagnosis of CFS/ME.
In discussing their findings, the authors add, "The lower values are consistent with data from two specialist services, where 54–60% of patients assessed received a diagnosis of CFS.... We were surprised that some of the services made the diagnosis of CFS/ME in 100% of those assessed."
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
[re Firestormm comment]Perhaps you could pursue this quotation from the ICC Panel's response. It seems to refer to a prevalence study using the Oxford criteria in the UK: “The increased estimates of CFS from 0.24% (Fukuda) to 2.54% (Reeves, USA) and 2.6% (UK) confirm that the Reeves and Oxford criteria select patient sets that are approximately ten times larger and more inclusive than those selected by the Fukuda criteria [7].”
Did the ICC response really say that? I suspect they are not alone. The only study I'm aware of that gives a UK prevalence for Oxford is the 1997 Wessely paper which found a 2.2% prevalence for Oxford and 2.6% for Fukuda i.e. effectively the same prevalence for both [see Table 2]. The study was flawed in many ways (so I don't believe either figure) but it certainly doesn't support a 10x higher prevalence for Oxford than Fukuda. They did quote a Fukuda figure of 0.5% excluding any comorbid psychological disorder, but that is of limited value as Fukuda allows comorbid disorders - so long as they are not the cause of the fatigue. I know of no other Oxford criteria prevalence estimates, so please do say if you know of one.
 
Messages
646
Perhaps you could pursue this quotation from the ICC Panel's response. It seems to refer to a prevalence study using the Oxford criteria in the UK: “The increased estimates of CFS from 0.24% (Fukuda) to 2.54% (Reeves, USA) and 2.6% (UK) confirm that the Reeves and Oxford criteria select patient sets that are approximately ten times larger and more inclusive than those selected by the Fukuda criteria [7].”

The prevalence and morbidity of chronic fatigue and chronic fatigue syndrome: a prospective primary care study.
"The point prevalence of chronic fatigue was 11.3%, falling to 4.1% if comorbid psychological disorders were excluded. The point prevalence of chronic fatigue syndrome was 2.6%, falling to 0.5% if comorbid psychological disorders were excluded."

Not that I'm quoting with approval - just pointing out that 2.6% was always an unmoderated figure - and 0.5% is notably high, however several criteria were employed, Oxford came in at 0.7% when moderated:

"There is no consensus about case definitions for CFS. Our principal outcome measure was CFS as defined by the latest Centers for Disease Control and Prevention (CDC) criteria,20 but we also used three other criteria. These were the 1450 American Journal of Public Health -1 lA September 1997, Vol. 87, No. 9 Chronic Fatigue first criteria developed by the CDC in 1988,21 the Oxford criteria proposed by United Kingdom researchers,22 and the Australian criteria.2" see Table 2.

Edit - acknowledge Simon - cross post got there first !

IVI
 

Ember

Senior Member
Messages
2,115
I don't know what condition Crawley is talking about here or what prevalence she is looking at, but 'millions' I don't think so....
Collins et al. reports, “In total, 12/152 PCTs in England, representing a population of 2.08 million adults, did not commission a specialist CFS/ME service in 2010.”

Concerning CFS prevalence in the UK, here's another reference, this one taken from a Joint Royal Colleges' Report on CFS (1996): "The population point prevalence of CFS is 0.1 - 0.9%, using restrictive (US) criteria that exclude patients with psychiatric disorders, and 2.6% in primary care using the Oxford criteria.” This statement begins the summary of epidemiology.
There is no scientific evidence to suggest that 'people with ME' as opposed to something else in the 'pot' are any more at risk from GET. To which you might reply - well PACE didn't include people with ME :)
clear.png
Here's a published comment by way of reply.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Collins et al. reports, “In total, 12/152 PCTs in England, representing a population of 2.08 million adults, did not commission a specialist CFS/ME service in 2010.”

Yes. I believe IVI highlighted this previously on the thread (comment reproduced below). But in terms of UK prevalence, 'millions' with CFS/ME remains unrealistic even according to the (predominantly) Reeves criteria. However, I would return to my previous comment relating to evidence from the 'real world' outside of scientifically applied prevalence.

There has been no effort (yet) to use the funding available to better study and analyse patient populations. Thanks for the additional references and comments Ember and everyone. I am going to need some time to go back through this thread I think. When I have more time. Right now the munchkins are crawling all over my bed :)

The 2 million figure relates to the total adult populations covered by the 12 PCT areas that don't have any M.E service at all. ("12 PCTs, covering a population of 2.08 million adults, provided no specialist CFS/ME service") 2.6% of the adult population of England is approx 750,000; 1.5 million would be 2.6% of the whole UK population; the authors do quote a range of 0.2% - 2.6%.

I would place this paper very firmly in the "please buy our services" category that is very much in evidence in advance of the contract purchasing flurry that has been engendered by the Govenment's plans to replace the PCTs with PCTs - er sorry I mean CCGs in the next 12 months. The CCGs, will be judged very much in terms of their compliance with NICE so to not have the M.E/CFS box as described NICE, having been ticked, risks the CCGs facing questions.

http://forums.phoenixrising.me/inde...-specialist-me-cfs-services-in-england.18958/
 

Ember

Senior Member
Messages
2,115
Yes. I believe IVI highlighted this previously on the thread (comment reproduced below). But in terms of UK prevalence, 'millions' with CFS/ME remains unrealistic even according to the (predominantly) Reeves criteria.

Mea culpa. I missed the first sentences that I've repeated and instead got caught up with the prevalence estimates. I've also missed any reference to millions of patients.