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Canadian Consensus Criteria for CFS/ME

Discussion in 'Latest ME/CFS Research' started by George, Jul 15, 2010.

  1. Ian McLachlan

    Ian McLachlan

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    Time will tell but I would be surprised if there is any ackowledement that a division has taken place. That is the concern because CFS I think will always be what they said it was, and XMRV +ve will be a group that whilsts it has been caught up within the CFS cohort is not and never was CFS. Also If 80% is the real figure, it is still not 80% of the total CFS cohort which presumably will still be the much greater percentage. I doubt it will act as a spring board to argue in support of research etc for those that may not have XMRV; neither will it sideline the psychs - if anything things will continue as before. After all it can it not be proven that they gave support to all included within the CFS cohort?
  2. Angela Kennedy

    Angela Kennedy *****

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    With respect Sean, your figures are speculative, and I think NEITHER of us know the implications for us all of XMRV being found as 'the smoking gun' or WHETHER it will be found as such, despite the optimism.

    WHAT do you think will happen to anyone with severe multi-system dysfunction, who tests negative for XMRV? Are you confident they will NOT be left at the mercy of the psychs? Really? After all these years of CCC people actually being left at the mercy of the psychs, and some with objective findings of OTHER micro-organism infection?

    Also- I'm not some upset patient who's been fighting for so long I cannot see the wood for the trees, thank you. I'm not even a patient. What I am, though, is something of a veteran advocate (like many), who has seen certain trends etc. over the years, is well-informed, and reserves the right to critically analyse the situation, and not just assume every little thing is going to be alright because I've been assured it will, which is rather the tone of your post here.
  3. Mithriel

    Mithriel Senior Member

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    I was involved with feminist groups in the early eighties trying to get incest survivors acknowledged and helped. It may amaze people now, but it was seen as being a very rare thing, not very important. Papers wouldn't publish the word and many, if not most psyches believed it was actually a fantasy of what the child wanted to happen rather than anything that did.

    I got the same feeling then that I get now reading wessely and the CDC.

    Then suddenly everything changed. I really understood what a paradigm shift was. I don't suppose it was overnight but it was less than a year. All at once there were articles, tv programmes, Child line was set up.

    My hope is that the same thing happens with us.

    If proper doctors begin specializing in neuroimmune disease they will soon realise that not all their patients are XMRV +ve. They will have a vested interest in finding out what is going on, as will drug companies when they see the market they could have.

    More and more articles are saying how serious ME/CFS can be which is a vast change from a decade ago.

    I have always believed that SW and friends would not give up CFS but things be peeled off as causes are found. They will fight dirty every step of the way. I am braced for hurt.

    Mithriel
  4. muffin

    muffin Senior Member

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    Could someone tell me just WHO is the "authority" in deciding which Criteria is used to make a diagnosis??? There seems to be several Criterias developed by different groups, including the shrinks in the UK. So, my prob. naive question is this: WHY can't we CFIDS/ME sick come up with our own Criteria that does include the Canadian Consensus and parts of the other Criterias (NOT the UK one though)? Who gets to decide which criteria is followed and why can't one we came up with one and be "the" one or one of the several already out there??? Dumb question, but I don't know how this works. Maybe we do need the CAA to get on board and help us push a solid, patient developed criteria and use their doctor and their power to push it down the rest of the medical, government, health/disability insurance groups throats?

    It is our disease and who better to know what should be in the CRITERIA than us? Yes, we use the doctors, research, etc. but WE SICK should be the ones developing the best and most robust Criteria.
    Thoughts? Am I so very much asleep that I am making stuff up and being a nut???
  5. xchocoholic

    xchocoholic Senior Member

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    Otis said -
    Hi Otis,

    This is exactly what I'm talking about. I'm too brain dead right now to remember what I heard about this condition but being diagnosed with CFS while having a clear cut symptom like this that surely could be analyzed further is a waste of your time. Give me a little bit and hopefully, I'll remember where I saw this ... if not have you googled excerise vomitting ? The Pacific Labs testing might help you determine what's going on too.

    It's interesting that your heart was "fine". Is that "fine" as in your cardiologist can't make any money off of you so by saying you're "fine", he's not interested in helping you find out what's really going on ... or fine as in it's REALLY "fine" ... My cardiologist made it clear that the fact that I have celiac disease means I may be lacking the nutrients I need for my heart to function properly but he wasn't interested in looking at my nutrient levels. Which is fine ... He told me to get my GP to test these for me ... I'm sure that other than my LBB diagnosis, he says that my heart is "fine" ... it's all in what you look for ... Dr. Cheney's info on us having a heart problem didn't interest my cardiologist.

    Hmmm, that may be the problem we're having here. Most of my labs were "fine" until I got a doctor who knew what to look for. My nutrient levels weren't even looked at when I was diagnosed as being gluten intolerant and probably a celiac. AKA having a disease that leads to malnutrition. And I was seeing a traditional doc at the time who knew about nutritional deficiencies and food intolerances. I wasn't tested for celiac disease when I was scoped in 2004 so there again I wasn't properly diagnosed ...

    IMHO, we're in the position we're in now because traditional medicine / aka drug companies have been left in charge for too long. Thankfully a lot of doctors have figured this out ... I'm not anti drug company just anti profit before health care ...

    George said ...

    Hi George,

    Exactly ... this is the big problem with having a diagnosis that includes everyone. Those of us who've been on the internet for awhile have seen by looking at various people's labs or reading about their experiences here that we should never have been grouped together to begin with. Grouping us together is what caused the confusion ... And a lack of proper testing is why this is happening ... Just look at all those PWCs who've been diagnosed with Lyme or celiac or whatever ...

    Some tests need to be revived too. The current gold standard for celiac disease is being revised thanks to the work of some doctors who noticed that their patients we're responding to the GF diet even if they tested negative. This has happened just since I started looking at gluten in 2005 ..

    I'm not a chemist but it looks to me like Fred has a good point about the current B12 test. We know the values are too low but many docs still don't realize this and tell their patients that the B12 is fine ... I could go on ... lol ...

    Sean said ...

    I certainly hope this doesn't happen. As it is, the current CFS researchers have been diagnosing PWCs without this test and by other means so I can't believe any of their patients who aren't XMRV positive will be left out ...

    FWIW ... I'm beginning to regret having posted on this thread ... I don't have a medical background and with my OI, I struggle to understand what I'm reading .. but ... I've seen several here who do understand this and do a great job of explaining things to us. I feel like I'm in the middle of a CFS/ME definition revolution with too many parameters to get my head wrapped around it ... There's the leaky gutters, moldies, Lymies, Thyroidies, adrenalines, GD-MCBers ... I'm sure I missed some ... lol ... My goal was to try to get someone smarter than me to seperate these out for us ... Now back to my sofa ... Take Care ... X
  6. Otis

    Otis SeƱor Mumbler

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    X,

    Thanks for the thoughts.

    I've progressed to CCC CFS over the years. I crammed a 30 year history into one post so I'm going to cut to the present to "simplify things".

    All I can say for sure from a heart perspective is that I've passed a stress test a few years back - that is I don't have COPD but I had to go the chemical route because I couldn't walk the treadmill. I can't afford and probably wouldn't endure the PEM as a result of a Pacific Lab trip and test.

    I am waiting for a confirmation of POTS, but my HR goes up about 35 BPM on standing pretty much right away so I'm hoping to get to the treatment part soon. I'm cynical about my cardiologist doing anything more beyond covering his legal butt but my initial POTS consultation is with his NP who I'm hoping might take a more global view and have a referral up her sleeve. Cardiologists generally don't get jazzed unless they can do a cool surgery or you have some incredibly rare and interesting condition. I think I'm interesting but not so from that perspective. :)

    When I had money I wasn't lucky enough to find one or more Drs. (tried many alternative avenues too) both willing and able to peel the onion (or at least my unique onion). I was clinging onto a job at the time and had limited and energy or time to do good research.

    Now I don't have the money to do anything but maintain very cheap supportive care and hopefully find some way to manage the POTS if not other dysautonomia symptoms.

    Nutritional factors can play a role with me. I see the post exercise nausea can be a result of deficiencies so I'm guess that's where you were coming from. I haven't had the symptom for 10 years because I can't exercise... My hunch is that more complex mitochondrial issues are at play. I have too little physical mental, emotional and mental energy.

    Well, that was probably sufficiently rambling and off-topic. :)

    Otis.
  7. IntuneJune

    IntuneJune Senior Member

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    What a good-looking group!!!
  8. xchocoholic

    xchocoholic Senior Member

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    Hi Otis,

    It looks like you've been through a lot too. I had to get the chem heart test too because when they tried to get me to do the treadmill, evidently I looked like I was going to kick it ... They took me off of it real quick and made me lay down. I have a left bundle branch block but my cardiologist says it's not bad enough to cause any symptoms. I really have to wonder how he's so convinced of that ... and yet he doesn't have an answer to why I get winded easily somedays and not others. He didn't even offer to do the TTT for me and I know he orders them ...

    I totally understand about not having the money to get further testing too. I wonder if the Pacific Labs test could be done cheaper and maybe at home somehow ... or ... lol ... you could fake a heart attack and get a really good work up ... just kidding ...

    I'm dealing with orthostatic intolerance mostly nowadays and I "think" I've found a couple of things that may help ... I say this knowing that what is working today may not work this well tomorrow ... ; ) ... at any rate, if you're interested ... I had been taking Virastop once a day for several years and when I stopped, my OI got worse. It was to the point where I could barely stand up somedays. Now that I'm back on it, my OI isn't as bad.

    I'm not sure why ... but I probably need the protease to break down proteins since I've found out that aminos are helpful for me. AND / OR ... it could be any of the other ingredients ... And / Or ... it could be that my OI is the result of a virus and the Virastop is keeping it at bay ... And just to add to the confusion ... yesterday and today I took Tyrosine and my energy level has been much higher than normal and I haven't even noticed my BP dropping today ... my PEM from running around for 12 hours straight yesterday was minimal today too. KOW ... I get the feeling I'm going to have to take this back tomorrow ...

    tc ... X
  9. xchocoholic

    xchocoholic Senior Member

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    ROFLMAO ... good one June ... We are an interesting group that's for sure ... tc ... X ... ps. maybe that should be thyroidites ? lol ...
  10. biophile

    biophile Places I'd rather be.

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    good cop bad cop

    This diagnosis/criteria dilemma really needs sorting out ASAP. Still trying to define "CFS" after 25 years is unacceptable. The CDC's regression is outrageous. On XMRV, nothing is ever simple or easy with ME/CFS, so I doubt XMRV will be.

    The bad news is, the implications of an association to XMRV are very difficult to predict, and the situation would probably just get even worse for the XMRV-neg patients, unless something interesting emerges from comparative studies between XMRV-neg vs XMRV-pos patients. The situation for the XMRV-pos patients won't necessarily change quickly either. Once confirmed as present, the role still has to be determined. Antiretroviral drugs may not help, or be tolerated by, most patients. Of course, a failure of antiretrovirals to improve symptoms doesn't necessarily rule out a causal role for XMRV in the onset of "CFS", which itself is a potentially concerning implication: what if the "damage" has already been done?

    Don't forget the possibility that XMRV is a dead end. The initial interest from health professionals and the excitement of patients could rebound hard from a false dawn of this magnitude. Or it could turn out to be "just another virus", which is better than nothing, but something we know will be inappropriately dismissed as irrelevant because it is "opportunistic" and "not present in every patient".

    The good news is however, the WPI supposedly won't be leaving anyone behind, and if XMRV really does pan out, the WPI should be in a better position. As I have said on another thread, the calibre of the scientists and journals involved so far on both sides are in favour of a link between ME/CFS and XMRV. We are in a desperate need for some real breakthrough and a massive boost to funding. A strong association of ME/CFS to XMRV could help us in a number of ways. The kind of sudden social change Mithriel posted about, would be an overall boost the our situation, and to some extend the quality of our lives. Imagine actually been treated as regular human being for a change!

    I agree that the biopsychosocialists et al will fight tooth and nail to cling onto ME/CFS. But even if those patients get snatched away from them, there are plenty more fish in the sea for them: think of all people with "medically unexplained" symptoms who don't fit the CCC or even the Fukuda criteria. Think of how the Reeves criteria selects five to ten times more patients than Fukuda, and perhaps dozens of times more patients than the CCC. They may eventually find some people to fit their models. Unfortunately for them, the notions of "somatisation", "functional" and "medically unexplained" illness are not water tight either.
  11. Angela Kennedy

    Angela Kennedy *****

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    We're also in a position now with this new proposed DSM that 'Complex Somatic Symptoms Disorder' allows a 'pyschogenic' diagnosis of any symptoms difficult to explain, even where the patient has an established organic illness: 'cardiac' symptoms being one of them mentioned in the literature leading up to this.
  12. Angela Kennedy

    Angela Kennedy *****

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    From Tate Mitchell via Co-cure:

    The Development of a Revised Canadian Myalgic
    Encephalomyelitis-Chronic Fatigue Syndrome Case Definition

    http://www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf


    1Leonard A. Jason, 1Meredyth Evans, 1Nicole Porter, 1Molly Brown,
    1Abigail Brown, 1Jessica Hunnell, 1Valerie Anderson, 1Athena Lerch,
    2Kenny De Meirleir and 3Fred Friedberg

    1Department of Psychology, DePaul University, Center for Community
    Research, Chicago, Il, 60614, USA
    2Department of Physical Education and Physical Therapy, Vrije
    Universiteit Brussel, Belgium
    3Department of Psychiatry and Behavioral Science, State University of
    New York at Stony Brook, USA

    Corresponding Author: Leonard A. Jason, Department of Psychology,
    DePaul University, Center for Community Research,
    Chicago, Il, 60614, USA Tel: 773-325-2018 Fax: 773-325-4923

    American Journal of Biochemistry and Biotechnology 6 (2): 120-135, 2010
    ISSN 1553-3468
    2010 Science Publications

    Abstract:

    Problem statement: Several investigators have indicated that case
    definitions for Chronic Fatigue Syndrome (CFS) are characterized by
    vaguely worded criteria that lack operational definitions and
    guidelines. The most widely used CFS case definition is the Fukuda et
    al. criteria, which uses polythetic criteria (i.e., patients are only
    required to have four out of a possible eight symptoms). Yet two of
    these eight symptoms (post-exertional malaise and memory/concentration
    problems) are an essential feature of this illness and the Fukuda et
    al. criteria do not require that these symptoms be present among all
    patients. Significant methodological problems could occur if
    investigators in different settings recruit samples with different
    percentages of these core symptoms. In contrast, the Canadian clinical
    case definition does require specific ME/CFS symptoms such as
    post-exertional malaise and memory/concentration problems. The
    provision of operationally explicit, objective criteria on specific
    key symptoms might reduce criterion variance as a source of
    unreliability. In addition, the use of structured interview schedules
    will ensure that symptoms are assessed in a consistent way across
    settings.

    Conclusion/Recommendations: In this article, we specified explicit
    rules for determining whether critical symptoms meet ME/CFS criteria
    using a revised Canadian case definition and a questionnaire has been
    developed to assess core symptoms. It is hoped that these developments
    will lead to increased reliability of this revised Canadian case
    definition as well as more frequent use of these criteria by
    investigators.

    ---------------------------------------------
    Send posts to CO-CURE@listserv.nodak.edu
    Unsubscribe at http://www.co-cure.org/unsub.htm
    Too much mail? Try a digest version. See http://www.co-cure.org/digest.htm
    ---------------------------------------------
    Co-Cure's purpose is to provide information from across the spectrum of
    opinion concerning medical, research and political aspects of ME/CFS and/or
    FMS. We take no position on the validity of any specific scientific or
    political opinion expressed in Co-Cure posts, and we urge readers to
    research the various opinions available before assuming any one
    interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
    link to our complete archive of posts as well as articles of central
    importance to the issues of our community.
    ---------------------------------------------
  13. Anika

    Anika Senior Member

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    Revised Canadian Criteria: Research, Clinical, Atypical, MS/CFS-Like, In Remission

  14. biophile

    biophile Places I'd rather be.

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    I forgot about CSSD, the construct of which poses a problem for all patients of all illnesses/diseases. The "psychs" already have their teeth into "CFS/ME" and aren't letting go even if it is accepted as a pathophysiological disease.

    This is good news. We need the CCC to become more mainstream.

    I agree.
  15. ixchelkali

    ixchelkali Senior Member

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    That's what I think, too. Like with AIDS. Even before HIV was discovered, clinicians began to realize there was a stage before the AIDS-defining opportunistic infections developed, that they dubbed AIDS related complex (ARC). ARC was characterized by weight loss, night sweats, diarrhea, swollen lymph nodes, neurologic disorders, cognitive difficulties, and chronic fatigue. Then once that HIV was discovered, they realized there was a still earlier stage that was asympomatic. I think that something like that probably happens with XMRV. And, who knows, maybe some people will never progress to a disease stage at all.
  16. ixchelkali

    ixchelkali Senior Member

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    Andrew, I hadn't heard about that. Can you direct me to the info?
  17. biophile

    biophile Places I'd rather be.

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    I concur.

    Check out the "Predating criteria" section from [The Development of a Revised Canadian Myalgic Encephalomyelitis Chronic Fatigue Syndrome Case Definition] (Jason et al 2010). The idea of non-fatigue symptoms predating the onset of "fatigue" has interesting implications. It is another step towards placing less emphasis on "fatigue" as the only primary symptom (the original CCC was already heading in that direction). More food for thought for all this talk about XMRV.

    It may also turn out that even psychological and emotional symptoms can predate the onset of "fatigue", or at least make one more vulnerable to the effects of psychosocial stresses which then appear to "predate" the onset of illness (and in the eyes of psychologisers, cause the illness). Depression is associated with an increased risk of Parkinson's disease, probably as an early warning sign of disease pathology rather than a causal factor. The same may be true of ME/CFS, which is already (questionably) associated with pre-onset stresses and psychiatric symptoms. Something similar can be said for regular exercise being a risk factor for CFS. A relatively asymptomatic phase of a XMRV infection (compared to full blown ME/CFS) could also explain "behavioural" research findings such as CFS patients consulting their doctor more often than usual in the years leading up to the onset of CFS. XMRV infection may cause vulnerabilities which is not made apparent until other triggers come into play.
  18. taniaaust1

    taniaaust1 Senior Member

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    hi muffin :)

    but why would one want to add even more confusion to things and create YET ANOTHER defination? It is stupid for every country to be having different definations for the same thing or patient groups being mixed. That is what is causing the issues now, one cant even trust the results of studies as they are done with all different definations . There needs to be world wide alignment!! with good definations.

    Please, Please no more definations for this. There is a heap out there already to be choosen from and already used, to many out there already. The CC CFS one was formed from CFS experts from about the world (multinational consensus).

    I bet Wessely would just love for another to be done using so called CFS "experts" (Wessely boys) from all over the world.. to try to get a more worldwide recognised psychological one. We dont need to give him a chance to get a foot in the door there.. The CC CFS hasnt gone any psychological slant to it, this definition must be like a knife in his side, the original ME definations are still out there too.

    Besides.. the CDC notes that ME is different to CFS. How do you know you dont fit their ME? and have been wrongly diagnosed?

    Since when do those with an actual illness go making the definations up for it? Did AIDS patients make their own defination up? Did any other illness do that? (that certainly would make it look like a "fake" illness in the eyes of the scientific fields, it wouldnt help to validate us). It's the doctor experts and researchers who know the condition well who throu consensus should make definations up. All this has been done.

    It may all just come down to those having CDC ME.. making sure they get the RIGHT diagnoses put onto their illness.
  19. Tammie

    Tammie Senior Member

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    The problem is that though they say there is a difference, the US does not actually recognize ME as a diagnosis....it is literally not possible to get a disgnosis of ME if you live in the US
  20. justy

    justy Senior Member

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    i have just read through all the preceding posts, so my brain is very wobbly right now, plus i am trying to get the kids to bed!
    i just hadto reply to say that i cant believe how similar my illness has been to Otis's description on the first page. i wont got into it now, as its a long story, but i have gradually worked my way up to full M.E at a moderate to severe level since i was about 13, i am now 40. I have never heard anyone describe my experience so exactly. is this unusual? i have read throught he CCC and i fit them exactly and perfectly, although for years i amy not have done, but was never really right. i have never been able to hold down a full time job, or become aerobically fit, or keep up with my peers in terms of walking, running or gym etc.

    its just blown me away so much reading this that i had to post, sorry for going off thread. I was finally diagnosed with M.E this year, ive been begging the doctors to find something wrong with me for years, but they would only treat for depression (which i never have really had)

    i would like to see the CCC adopted everywhere. i find the different definitions confusing, but like otis would probably have met different criteria, such as FUkada years ago. rambling now so will stop.

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