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Establishing research cohorts of 'Canadian' criteria patients: an urgent need

Discussion in 'Action Alerts and Advocacy' started by Angela Kennedy, Feb 21, 2010.

  1. julius

    julius Watchoo lookin' at?

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    Minimally, if at all. It is the guideline that GP's pull out when you want to talk about CFS, but most still look at it smugly and say it's probably not a 'real disease', then give antidepressants.

    As far as research, there really isn't any going on here, aside from the one XMRV study by Dr Joliceur. Not really sure what criteria are being used there, but I will assume it's CCCPCCD.
  2. Angela Kennedy

    Angela Kennedy *****

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    Good point. I believe this has been argued similarly elsewhere (though I can't remember exactly where)
  3. Angela Kennedy

    Angela Kennedy *****

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  4. Dolphin

    Dolphin Senior Member

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    Well done for doing that.

    It's surprising to me that more people don't post comments to more biomed comments. If a journal article has 1 or 2 comments, people reading the paper will be likely to read it - and biomed journals are online journals (generally anyway).
  5. Dolphin

    Dolphin Senior Member

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    Canadian criteria vs Canadian guidelines

    This reminds me that people need to be clear when talking about Canadian criteria/guidelines whether they are talking about the diagnostic criteria (a page or two) or the guidelines. I've seen people speak at cross-purposes more than once.
  6. starryeyes

    starryeyes Senior Member

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    We're talking about the Canadian Definition for CFS right Tom? Isn't that the term we want to use.

    Angela, thanks for writing that comment.
  7. Hope123

    Hope123 Senior Member

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    Since this thread mentions the Canadian definition and its use in Canada, I wanted to put a plug in for Canadians to look into joining the patient registry at FM-CFS Canada, which already has 2000 members.

    http://fm-cfs.ca/survey.html


    This group, along with ME/FM Action Network, are the two major orgs for CFS/ME in Canada and presented the Canadian Guidelines to the gov't there as I understand. ME/FM Action Network is co-sponsoring the 2011 IACFS/ME Conference to be held in Ottawa.
  8. julius

    julius Watchoo lookin' at?

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    Teej, I think Tom is referring to the fact that there is a section in the document directed at physicians to use for clinical diagnosis. There is a much longer discussion that pertains more to research etc.

    Sorry if I'm wrong about that Tom.
  9. Dolphin

    Dolphin Senior Member

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    That's what the heading of the message mentions.

    Not sure if that's the best term. I've heard Nancy Klimas say it should be called the International Consensus definition (or something to that effect) as there were all sorts of people involved in writing it, not just Canadians.

    The distinction I'm making is between the definiton and the "Canadian guidelines" which is a big document (around 100 pages) (or the Overview - around 20 pages). These cover all sorts of issues on clinical management and suggestions for treatment. I think the Overview is excellent but have a few qualms about some of the things in the full guidelines. But if people are talking about clinical practice, one has to be clear what exactly one is talking about e.g. what Canadian doctors are doing/not doing. Some people might say "the British medical establishment are not going to accept the Canadian guidelines" - I think if you are talking about the full "100 page" document "lock stock and barrel", there is something to do that - they're not necessarily going to accept everything. Accepting the definition is a much smaller and simpler issue. Sometimes people talk about the "Canadian guidelines" but what they are referring to is the Canadian criteria rather than the full document. So things can get confusing if one is not clear.
  10. mezombie

    mezombie Senior Member

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    Good point, Tom.

    The"Clinical Working Case Definition of ME/CFS" consists of three pages. Applying the case definition takes up another seven pages (I do find these seven pages crucial).

    The problem is that the Case Definition and the Clinical Guideliines are all part of the same publication/document

    See http://www.cfids-cab.org/MESA/ccpccd.pdf -- the diagnostic criteria start on page 11 (click to page 5 of the document).
  11. Angela Kennedy

    Angela Kennedy *****

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    Yes, I see that.

    Nevertheless, we are talking about the 'criteria' or 'case definition' here for research purposes only, and I know that I've been using that term when discussing all 'CFS' criteria (Fukuda, Oxford etc.). 'Canadian' is only a shorthand use, because it is difficult to use full terms when discussing 'CFS' criteria at length and having to repeat them frequently in one paragraph, for example. I've seen others do similar.

    Either way, scientists such as Wessely, White, Kerr, and charity reps such as Charles Shephard are aware that, when the term 'Canadian' criteria or case definition is made in regards to research, it is those, not the Guidelines as a whole. There is enough evidence of that, even in recent pronouncements from Shepherd, for example, on the UK XMRV research.
  12. Gerwyn

    Gerwyn Guest

    Angela can you get hold of the PACE methodology so we can get our shots in to the media pre publication
  13. Angela Kennedy

    Angela Kennedy *****

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    That's a good idea Gerwyn. Should that be on this thread or another self contained thread?

    I'm having problems with my internet provision so this might take a couple of days.
  14. Marco

    Marco Old blackguard

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    Gerwyn

    I'm sure you would prefer to view the methodology first hand but the Hooper paper Magical Medicine has already critiqued much of it.
  15. Gerwyn

    Gerwyn Guest

    Thanks very much Marco yes I would like to cast a cynical eye over it and try to find more "rats" I did not know that Prof Hooper had critiqued it.Perhaps we can" predict " the results based on the methodology.It might just provide pause for thought if we can get it to the right people--who knows do you think its worth a try?
  16. Gerwyn

    Gerwyn Guest

    Red alert


    The study is using the Oxford diagnostic criterea which is not internationally accepted and thus not valid for diagnosing ME/cfs

    Depression is selected for

    diagnosis is retrospective

    All primary end points subjective self rated fatigue and function

    not blinded

    No controls

    secondary end points all subjective with AN objective measurement of physical function--They can do this forsecondary but not primary how? I haven,t started on the stats I would laugh if this wasn,t such a fit up

    Can someone get this to the press pre publication tory party lablour incompetent spends fortune on study that cant even get diagnosis right etc mail express

    does Prof Hooper actually know this--if not can someone please tell him

    Kim or anyone is it possible to highlight this generally for all to see Angela your forte I think
  17. Angela Kennedy

    Angela Kennedy *****

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    Ok - here's what I found to hand so far on PACE:


    1. Obviously Hooper et al's 'Magical Medicine' contains a LOT of information. I found their section 4 to contain the newest information I would say, but using the left hand contents column on the pdf has been useful for me to find other key points:

    http://www.meactionuk.org.uk/magical-medicine.htm

    2. The PACE Report by Jane Bryant, to my knowledge the first advocate document on the PACE trial, is available on the One Click Group on their column of links/docs down the left hand side (The link is in blue).

    http://www.theoneclickgroup.co.uk/

    3. The PACE Trial Identifier:

    http://www.theoneclickgroup.co.uk/documents/PACE/THE PACE TRIAL IDENTIFIER .pdf

    4. I wrote PACE- breakdown of issues in 2004 in response to Peter White's Co-cure post:

    http://www.theoneclickgroup.co.uk/documents/PACE/BREAKDOWN OF ISSUES.pdf

    5. The paper by White et al, an interim report on PACE: "Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy" - full text is available here:

    http://www.biomedcentral.com/content/pdf/1471-2377-7-6.pdf

    But also the comments, by myself, Tom Kindlon and others, and, importantly, response by White:

    http://www.biomedcentral.com/1471-2377/7/6/comments/comments

    I think these have the advantage of being relatively concise, hopefully!
  18. Angela Kennedy

    Angela Kennedy *****

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    @ Gerwyn:

    Yes this is a pretty concise list of most of the methodological problems that became evident. Looking at the manuals and Hooper et al's analysis, more issues have come to light, for example the risk of confirmatory bias (am I right on that?) AGAINST 'APT', as well as the discrepancy between pacing as PACE authors construct it, and anyone else might understand it (i.e. banal and understandable autonomonous managing of activity). Other issues around ideology and bias- which can and should be discussed in scientific discourse, and ethics, seem to be coming up as well. The retrospective application of the 'London' and Fukuda is going to be 'interesting' also.

    But otherwise you've encapsulate most of it I'd say.
  19. Dolphin

    Dolphin Senior Member

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    Just to be clear, my comment wasn't prompted by what you said but when somebody asked what was happening in the ground in Canada. As I said, I've seen others talk at cross-purposes.

    I am happy with the term Canadian criteria. I was just specifically asked:
    which is why I mentioned the International point.

    But it wasn't my main point.
  20. Dolphin

    Dolphin Senior Member

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    Gerwyn, if you are up to it, if you could post comments on the paper at: http://www.biomedcentral.com/1471-2377/7/6/comments/comments , it'd be great. You don't have to put all your comments in one message.

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