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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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White, Miller & Crawley respond to request for UK to adopt Canadian criteria

Discussion in 'Latest ME/CFS Research' started by olliec, Jul 20, 2011.

  1. olliec

    olliec

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    I wrote this piece for the BMJ in June (http://www.bmj.com/content/342/bmj.d3836.full?keytype=ref&ijkey=ZWOFdwR8iozaEPQ) and quoted White as saying "The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME."

    White & co have responded to the BMJ:
    http://www.meassociation.org.uk/?p=7156

    They say "The one advantage of the Canadian criteria over alternative diagnostic criteria is that they require what many would regard as the characteristic feature of CFS, post-exertional malaise (6). This is something that may need incorporating in future definitions to help differentiate CFS from more general fatigue."

    It's a very small step, but it does seem to me to be a small step forwards, though it would be far better to leave CFS as a definition of generalised fatigue and use a completely separate definition for M.E.

    We owe so much to Malcolm Hooper for his dogged tenacity in persisting to challenge these researchers, and for forcing White to admit the PACE Trial was studying CFS, not CFS/ME.

    Ollie

    Google+ https://plus.google.com/114928937512638769810/posts
    Twitter: http://www.twitter.com/ollie72
  2. Esther12

    Esther12 Senior Member

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    Thanks Ollie, and thanks for your first piece too.
  3. Snow Leopard

    Snow Leopard Senior Member

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    Thanks Ollie.

    It is disappointing that they fail to appreciate the other requirements of the CC.
    The second problem is that their definition of post exertional malaise might not be the same as the one we would like..
  4. Dolphin

    Dolphin Senior Member

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    For people not familiar with the revised Canadian criteria, an important point about them is there are gradations so it is not all or nothing:

  5. oceanblue

    oceanblue Senior Member

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    Thanks, Ollie
    The PEM point is a step forward, though as Snow Leopard say there may be issues over how PEM is defined.
    What I like about the CCC is that it seeks to identify a characteristic pattern of symptoms as opposed to none (in Oxford Citeria) or a random selection in Fukuda/International (pick 4 of these symptoms, any 4 will do...). For that reason I think we need to do more than just add PEM as a mandatory symptom, but it is certainly a start.
  6. biophile

    biophile Places I'd rather be.

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    So the revised Canadian criteria can potentially replace all other CFS definitions without leaving too many people out in the cold for being strict. It is difficult to say whether this category would be more or less strict than the Fukuda criteria, but obviously more strict than the Oxford criteria.

    These authors appear to be aware enough of the revised Canadian criteria to criticize it in their reply, but are wrong here. According to the revised Canadian criteria: "Individuals who do not meet the fatigue criterion may still obtain a Clinical ME/CFS diagnosis if they meet the other five criteria."

    Notice the irony, it is now possible to be diagnosed with ME/CFS without "chronic fatigue". That's what happens when reason overcomes the CDC/Oxford spin and definitions start going back to ME without the over-emphasis on fatigue which is better seen as A main symptom not THE main symptom.

    I agree.
  7. Enid

    Enid Senior Member

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    Thanks ollie - Prof Hooper's dogged determination over years correcting these sort of people/medical establishment seems to be listened to slowly now.
  8. currer

    currer Senior Member

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    Hi Ollie,
    Welcome to Phoenix Rising. Nice to see you here and your first post. Congratulations on the BMJ article and all the work it took to set up with Ms Groves.
    Currer.
  9. Sean

    Sean Senior Member

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    Thanks from me too. :thumbsup:
  10. Dolphin

    Dolphin Senior Member

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    On the one hand they criticise the criteria that alternative diagnoses will be missed; however it sounds like with the authors, they won't even ask about these alternative symptoms so it would seem they might even be less likely to know about these symptoms: if a doctor uses the Canadian criteria, he/she would then become aware of these symptoms and could then consider whether they might be due to other conditions. Indeed, fatigue is part of the definition and probably a lot more than 50% of the time, the fatigue won't be caused by ME/CFS but another physical or psychological condition: just because a symptom is part of a ME/CFS definition doesn't mean a doctor has to assume the patient definitely has ME/CFS.
  11. Esther12

    Esther12 Senior Member

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    True true.

    And psychosocial researchers seem to have taken no responsibility for the extent to which their work has created a psychosocial setting in which it is seen as acceptable to just dump patients with a 'CFS' diagnosis when preliminary investigations find no obvious cause.
  12. currer

    currer Senior Member

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    Good comment from nmj on the MEA site.

    These people are just trying to hang on to as much of the status quo as they can get away with. But they know they are being challenged and change is on the way!
  13. biophile

    biophile Places I'd rather be.

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    Oh the irony!

    Crawley & Miller & White can be partly correct here, these symptoms and signs may indeed suggest an alternative diagnosis to their own version of CFS, such as ME.

    ;)
  14. oceanblue

    oceanblue Senior Member

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    The new International Criteria have now labelled this characteristic part of the illness PENE: Post-Exertional Neuroimmune Exhaustion and seem to describe it pretty well.
  15. biophile

    biophile Places I'd rather be.

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    White's trouble with burdens of professionalism

    Why is it that whenever I read or hear about stringent ME/CFS research being an impractical burden, Peter White is involved?!

    This is a large post. To help break up the text I quote the beginning of each topic and answer underneath ...

    As Barba Bright points out in the rapid replies "the discrete symptoms in the CCC are so simple to recognise that a GP working through the list with the patient would be able to reach an outline diagnosis under these criteria within ten minutes" (http://www.bmj.com/content/342/bmj.d3956/reply).

    White on the other hand has previously portrayed PEM not as a pathological disease process but the ordinary effects of "deconditioning" and/or psych-behavioural disturbed homeostasis. There is ambiguity in the term "post-exertional fatigue and/or malaise", ranging from mild fatigue after exercise that shouldn't occur in a healthy person (and could be due to illness or obesity or deconditioning), to a full blown abnormal biomedical response to trivial activity with an incapacitating array of symptoms and signs. The revised Canadian definition states: "Jason et al. (1999a) found that post-exertional fatigue or malaise for individuals with CFS ranged from 93.8-40.6% depending on how the question was asked." (http://thescipub.com/pdf/10.3844/ajbbsp.2010.120.135)

    The rich description of post-exertional symptoms in the Canadian definition, which is lacking from all other CFS criteria, was further refined in the ME-ICC description as "post-exertional neuroimmune exhaustion". Those that experience "PEM" do not necessarily meet criteria for PENE and those that do not meet PENE criteria cannot be diagnosed with ME. I doubt White would endorse the strict description of PENE or even the PE-F/M of the original Canadian definition, perhaps he would allow something similar to the watered-down pseudo-mandatory version found in the NICE 2007 guidelines.

    White has dissed the Canadian criteria before in a similar manner. In a video presentation (http://rsm.mediaondemand.net/playersp1.aspx?EventID=1291) he complains about possible neurological signs and symptoms, and mentions his self-confessed inability to understand or define what "emotional overload" is despite being a psychiatrist (which is probably just a snide comment).

    AFAIK White doesn't accept the notion of ME/CFS with neurological features or Canadian defined ME/CFS, so there remains a grey area limbo between classical neurological signs and symptoms versus the more subtle manifestations of neurological dysfunction which may not result in a diagnosis of a traditional neurological disease but may exclude a patient from a CFS diagnosis by White, and he would probably want to exclude this grey area as much as possible to get a "cleaner" biopsychosocial cohort with presumed functional illness that will respond better to CBT/GET.

    Meanwhile two large studies used the Canadian criteria were recently listed on PubMed:

    (1) A team of researchers in Spain conducted a study in which 824 consecutive cases were examined using both Fukuda and Canadian criteria. They concluded: "In the evaluation of the patient, it is very important to apply the Canadian criteria and to assess comorbidity." and "The different groups of symptoms defined by the Canadian consensus showed that CFS is a homogeneous entity." (http://www.ncbi.nlm.nih.gov/pubmed/21794854)

    (2) A team of researchers in the UK conducted a study in which after searching a GP database, Canadian criteria was assessed in 265 cases. They concluded, "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, minimisation 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." (http://www.ncbi.nlm.nih.gov/pubmed/21794183)

    Neither team of researchers were "burdened" by the Canadian criteria nor found them "impossible" to implement. Instead these researchers' results highlighted the usefulness of the Canadian criteria. Compare their comments about it to White's "fear avoidance" away from it, claiming that using them is impossible and impractical.

    This decision/(excuse) was given before the trial began, but as it turns out, also just happened to coincide with data (then unpublished but acquired years before the PACE trial began) from their biopsychosocialist associates which showed that CBT does not actually lead to objective increases in activity as presumed for about 20 years (http://www.ncbi.nlm.nih.gov/pubmed/20047707). Seriously, what is the more likely scenario: (a) it would have been too much of a burden for patients to wear an ankle device for one week to collect important data at followup in order to answer a crucial unresolved question in research, despite being made to do it at the beginning of the trial anyway; (b) data for a measurement which could have embarrassed the CBT/GET approach would have been too much of a burden on the authors' reputations and the biopsychosocial approach so it just wasn't collected.

    Apart from the fact that in the Canadian criteria POTS is not an exclusion but actually listed as a symptom under "Autonomic Manifestations", POTS and orthostatic intolerance in general are relatively common (and potentially treatable?) problems in ME/CFS (for example see http://www.cfids.org/about-cfids/orthostatic-intolerance.asp and http://www.ncbi.nlm.nih.gov/pubmed/18805903) so it may be unethical NOT to do such tests when indicated. In one small study, Head Upright Tilt Table Testing was positive in 13/15 patients (http://www.iacfsme.org/BULLETINSPRING2010/Spring2010ABSTRACTLevine/tabid/430/Default.aspx). People argue that CFS patients don't show abnormalities in "routine testing" so there's no point doing any more testing. This convenient advice borders into willful (and possibly criminal) negligence if these abnormalities are known to exist and be relevant.

    As Hooper explains (http://www.bmj.com/content/342/bmj.d3956/reply#bmj_el_267520) in his BMJ rapid response, the symptoms White dismisses as being of dubious validity are important "for a diagnosis of ME as stipulated by 26 international experts from 13 countries who between them have 400 years experience of diagnosing over 50,000 patients. [...] When did the careful assessment of sick people stop being part of the practice of medicine, especially when the disorder in question is known to be a complex multi-system disorder?"

    Within the last few years the Canadian criteria has been discussed much more than before. This is an encouraging sign, and the resistance to their utilisation can be expected from certain people. It should deeply touch my heart that White is so concerned about easing patients' burdens, but I bet most patients would not find these procedures a burden if it helped them understand more about their illness and possible treatments or even more appropriate alternative diagnoses rather than dumped in a wastebasket. So one wonders where the real easing of burden lies, with patients who want and deserve the appropriate medical care, or certain researchers who are reluctant to adopt methodology which is more stringent and complex than they are used to and which also threaten their ideologies?

    I like a bit of humour to help ease the frustrating and soul-destroying aspect of ME/CFS analysis, and I found v99's comments on this issue (from the related ME/CFS Forums thread) amusing and relevant enough to include here as well:

    I half-joked in a previous post: White (et al) may need CBT to correct their "abnormal illness beliefs" regarding ME and to overcome the "fear avoidance" and "psychosocial barriers" that prevent them from accepting the need for and implications of biomedical research, and may need GET to increase their activity levels so they are fit enough to use stringent Canadian criteria for research without complaining about "burden" and enable them to perform "demanding" and "unethical" tilt-table tests etc on the significant proportion of patients who will show abnormalities and who justify such tests being done.
  16. Enid

    Enid Senior Member

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    Well worth the read here biophile - especially as a "threatening" UKer so called ! (how they got things wrong .....again).
  17. Angela Kennedy

    Angela Kennedy *****

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    Very nice analysis, biophile.
  18. Dolphin

    Dolphin Senior Member

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    Good analysis, biophile. Well done for bringing together all those papers as references.
  19. oceanblue

    oceanblue Senior Member

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    Good work - thanks
  20. Graham

    Graham Senior Moment

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    Good thread - I have learnt a lot!

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