1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

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

Discussion in 'Latest ME/CFS Research' started by Firestormm, Aug 18, 2012.

  1. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,780
    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.
    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.
    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:"
    If only CFS cohorts are used, on the other hand, treatment results can't be assumed to apply to patients with ME.
  2. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,974
    Cornwall England
    Morning :)

    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:
  3. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,780
    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 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:”
    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."
  4. Simon

    Simon

    Messages:
    1,337
    Likes:
    4,204
    Monmouth, UK
    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.
  5. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    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
  6. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,780
    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.
    Here's a published comment by way of reply.
  7. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,974
    Cornwall England
    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 :)

  8. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,780
    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.

See more popular forum discussions.

Share This Page