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!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Article: Re-inventing CFS- the International Consensus Criteria for ME: the Marj Van de Sande Interv

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Sep 12, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,012
    Starlight likes this.
  2. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    A wonderful, wonderful interview!

    Thank you for doing this.

    I was wondering...
    Is there a comparison chart (or table) that exists and which shows all of the definitions, authors and dates? It would be helpful when comparing them.

    I was diagnosed with the CCC in 2006.
    I was wondering how similar or different the ICC is and does it make a difference for Canadians diagnosed with CFS (or CCC patients)?
  3. Jill McLaughlin

    Jill McLaughlin *****

    Messages:
    196
    Likes:
    5
    Cort, Thanks for the interview, but the ME-ICC is not about reinventing
    CFS or whatever you want to call it. This definition states that ME
    should be removed.

    And the question remains: does the CFIDS Association of America or
    Pandora, MCWPA (and all the related/inter-related groups) support
    the new ME-ICC definition? Seems there has only been rather tepid,
    superficial mention of it. They ban and censor on their sites and
    do not allow these questions, and if anything comes up they
    say they will review it. It is odd as it has been 2 months.
    (Yet they spend time trying to reclassify CFS, and saying
    that CFS will somehow disappear?)

    Claiming to be patient advocacy groups, they must be aware that
    ME patients want recognition and that many patients have
    erroneously been given a CFS diagnosis. This is not about
    semantics, but it is very dangerous as recommendations
    for CFS are very harmful. Trying to make them the same and
    keeping the connection will only continue the same problems
    and misinformation, which has literally contributed to the
    iatrogenic worsening of the condition and in some cases even death.

    Jill

    -----

  4. Bob

    Bob

    Messages:
    8,077
    Likes:
    10,359
    England, UK
    Good questions Boule de feu...
    I haven't seen such a chart comparing all the definitions.
    And I haven't yet seen (or made for myself) a direct comparision between the ICC and CCC.

    ETA: I've just remembered that WDB has done some work on this on the wiki... I haven't read it, so I don't know if it answers your questions, but it might be a good place to start.
    http://forums.phoenixrising.me/show...ical descriptions of chronic fatigue syndrome
  5. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    Thank you, Bob.
    Wow! It's all there. I just need to print and put them side by side.
    Who is WDB?
  6. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    My guess is that most groups support this definition - it looks and feels much, much better than the Fukuda ddefinition - and it fits most of the people's experience on the Forums. In that sense it is a huge step forward that everyone should embrace. My guess is that the questions will come in how to transition from CFS to ME in a practical sense...how does ME work with social security or health insurance or ? and how do those things match up over time. Whether researchers can get funding to explore the new definition is a big huge issue. How will it play with the federal funders at the DHHS? Unless there is research using the new definition it won't make the impact it needs to make. I can't imagine the different groups not looking at the new definition and not saying "This is the disorder we're advocating for". You can't really say that with Fukuda or the other Empirical or Oxford definition.
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    My guess is that if you meet the criteria for the CCC then you probably met the criteria for the ICC. They are much more similar than different. You don't need to have had the illness for 6 months to met the criteria and they put more emphasis on post-exertional problems but otherwise (without looking :)) I think they are probably quite similar. The same duo - Dr. Carruthers and Marj van Sande - lead both efforts.

    The CCC also spawned the Pediatric definition - so now there are three quite similar definitions butting up against the Fukuda definition (used by almost all researchers) and the Empirical definition (used only by the CDC). I would say that the CCC, Pediatric and ICC definitions have the momentum :)
  8. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    That's what I thought, too. I am missing 5 or 6 symptoms from the list but otherwise, I have them all.

    I will be attending the IACFS event, next week. I have noticed that there is a presentation on disability. Maybe I could ask how the insurance companies will perceive ME with the new definition. I just hope I will be able to stay that long... :-(
  9. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,780
    For insurance purposes, I don't see any advantage in having an ME-ICC diagnosis over a CCC ME/CFS diagnosis. For that reason, I haven't asked for a new diagnosis, even though I'm sure it would be forthcoming if I needed it. In Canada, the ICC may be useful only in selecting research subjects at this point.

    (I'm coming from the perspective here of an adult already diagnosed.)
  10. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    Right. This definition will take time to get into the system - if it does. The most important thing, in my opinion, is changing what types of patients get into research studies. All these physicians and researchers are basically saying that we don't think research studies in general are looking at at the kinds of patients we're seeing or think we should be researching. That's a pretty powerful statement and hopefully researchers funders will think about that and explore. The Fukuda definition 17 years ago cited the possibility of subsets and yet here we are - with little comprehensive work done on that aspect by the CDC - which sponsored the definition - almost 20 years later. (They have looked at symptoms and did try to break the group up in a Pharmacogenomics study...but basically there's been little concentrated effort).
  11. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    My guess is that the insurance companies will need studies that validate the definition plus govt buy-in before they cover anything. I think they're probably usually the last ones on board. . Asking how the ME definition fits into disability would be a great question to ask though.
  12. Marco

    Marco Old blackguard

    Messages:
    1,280
    Likes:
    961
    Near Cognac, France
    Nice review Cort!

    I have to admit that the ICC is potentially much more significant than I had initially suspected - assuming of course that it gains traction and there's much more work to be done.

    Just a few observations :

    One of the great strengths of the Canadian Criteria, regardless of the fact that they weren't published in a medical journal, was that (perhaps due to the involvement of the Canadian Health department which requires bilingual publication?) they were available to anglo and francophones and therefore are well known and referenced in continental Europe (amongst patients and advocates at least). On a personal level I was able to hand a copy to my GP which helped enormously with our dialogue in the last few years. A search of Google France for the International Consensus Criteria (or any Francophied variation) doesn't as yet bring up any links in French.

    Secondly, it would be useful to know what if anything has resulted from the publication in the Journal of Internal Medicine (responses, letter etc?) as activity is one thing but results are what we want.

    Lastly, whether or not the ICC gains traction would be greatly helped by a demonstration that they do what they say they do. Its a very fair point that the very research they reference to support the criteria was carried out on a population that was at best 'ICC plus'.

    It would be enormously persuasive if the ICC authors could design (and secure funding for) a single 'proof of concept' study that elects a Fukuda and Fukuda plus ICC cohort; subjects them to repeat exercise challenge to elicit the key PENE state and simultaneously measures one or more of the key physiological/immune markers that have been identified in 'subsets' in previous studies.

    A finding of 100% (or close to) of ICC selected patients showed 'x' pathology would be a major selling point for the new criteria.
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC

    I think those are the keys....first getting the money to do the studies (or persuading researchers to do an analysis of their results that includes separating these two groups) and then ddemonstrating that the two groups have different results. It would be fascinating to see how they do on exercise tests.
  14. Megan

    Megan Senior Member

    Messages:
    230
    Likes:
    13
    Australia
    Thanks Cort for both of these articles - very informative.

    I hope the new definition works out (perhaps with a couple of minor adjustments). The need for narrower criteria for research is obvious. Though the paper indicates in places it is also a clinical definition (I hope that doesn't hurt some people with disability etc).

    The main issues I have with the new definition (and maybe with the CCC) are:
    1) how they deal with the relapsing and remitting nature of the illness. I see many people have raised this on the discussion threads on this forum. Given that the illness goes over years and research studies typically ask "what symptoms have you had in the last week/month etc", then it is easy to see gross undercounts happening as people might not have all those symptoms such a short timeframe, particularly if they have learned to 'manage' the illness. Hopefully the forthcoming guidelines will deal with this.
    2) It is also a similar problem that a 50% reducion in activity level is compulsory. I agree the impact on activity is a central symptom, but people's level of ability can change over time, either getting better or worse. It is hard to imagine that someone who has 30% activity levels and later recovers to 60% still doesn't have the same illness, or that they shouldn't be counted in an epidemiological study. Worse still that someone should be left without a diagnosis until they reach this level of disability. The bedbound are obviously worst off, but the ICC also uses the term 'mild' to describe a loss of 50% of activity levels which just doesn't sound right. Surely the yardstick for measuring disability should always be a healthy person?

    No question this really is a difficult illness to 'nail down'. It is very bizarre.
  15. Bob

    Bob

    Messages:
    8,077
    Likes:
    10,359
    England, UK
    I totally agree with your comments Megan. I was very surprised to see the issue of this sort of variability left out of the ICC. I think that it needs to be addressed by the authors, or it leaves any of us with wildly (or moderately) fluctuating symptoms in an unknown position.
  16. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    The bottom line is there absolutely must be a line drawn in the sand where research only accepts cohorts on the basis of accepted objective laboratory testing. Both the items you cite are extremely subjective to begin with and easily manipulated by the Psych researchers. I cannot believe at this point in time that if you put Mikovits, Komaroff, Klimas, Cheney, et al in a room they couldn't come up with 3 tests that would do a better job than subjective questions concerning malaise and energy levels.
  17. Megan

    Megan Senior Member

    Messages:
    230
    Likes:
    13
    Australia
    Floydguy,

    I get your point, but on that basis everything in the ICC and CCC is subjective. I am commenting on the paper as published. I hope they do come up with objective testing. Perhaps the follow up papers will deliver that?
  18. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    I agree Megan - I think the definition is a bit too severe in that case. You can certainly say in my case that my physical activity has gone down by over 50% but that's because I was active exerciser beffore ME/CFS but what about people who didn't exercise before? My level of physical activity now is certainly on par with a sedentary person...yet if I tried to really exercise I would be severely whacked so something is obviously going on.
  19. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,974
    Cornwall England
    So am I reading this right now then?

    ME-ICC will replace 'CFS-whatever'?

    That there will be only one definition and nomen and that will be ME-ICC and Myalgic Encephalomyelitis?

    Is that what is now being proposed?

    Only I thought previously we were debating something wholly different, that ME would exist alongside CFS with appropriate and different criteria?

    Separately, though connected, what were the feelings of Marj Van de Sande about the specific use of Myalgic Encephalomyelitis as a) a medical term, and b) in the absence of specific tests to prove it is a name worthy and most suitable of this criteria?

    It seems 'crazy' to me that one can create a criteria, attach a term, and highlight PENE as the main symptom and yet not be able to clinically test for any of it.

    Yes I know that this is perhaps nothing different to what happens presently, but we should be moving forwards and not back.

    One cannot 'invent' a term (PENE) to describe symptoms expressed by patients without proving that what PENE stands for actually exists clinically.

    This article seems to have reversed what was being said previously. I mean it all 'sounds' great and positive but in reality what do we have?

    ANOTHER set of criteria and for those in the USA ANOTHER nomen and patients saying 'Yep I have that! Count me in!'

    This has to be credible or else we are back to square zero. It is absolutely silly for me as a patient to claim 'I have ME as defined by the ME-ICC'!

    I can't march into my doctor's surgery with this or to see my consultant. What's he going to say when I announce 'Oh yes I have PENE!'?

    Come on guys....

See more popular forum discussions.

Share This Page