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NYT: Proposed new definition for autism - implications for CFS/ME?

Discussion in 'Other Health News and Research' started by Firestormm, Jan 21, 2012.

  1. Firestormm

    Firestormm

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    19 January 2012: http://www.nytimes.com/2012/01/20/h...many-study-suggests.html?pagewanted=1&_r=1&hp

    LBRB: Provides some more background re: Autism proposals and who's behind them: http://leftbrainrightbrain.co.uk/20...LeftBrain/rightBrain (Left Brain/Right Brain)

    I was reading the NYT article and I couldn't help but think again about the possible implications should something similar come about for my condition.

    Even if, for example, the ICC ME were to be adopted as it currently stands, there is a very good chance (in theory at least) that many people with my diagnosis will find themselves in a similar situation as those currently diagnosed with autism (should that new definition go through).

    Or put it another way, if the criteria are tightened up for CFS/ME for good reasons the result would still in theory be the same: people who were told they had 'ME' and/or 'CFS' could find they don't any longer.

    When we have debated the pro's and con's of tightening criteria, redefining the condition, adopting new criteria - we don't really talk about the chances of any of us suddenly finding we are on the outside looking in.

    I could argue I suppose that I don't currently 'enjoy' the same level of support and care that someone with severe autism might in theory receive and that by tightening/redefining my condition one of the benefits would be better support/care/treatment/understanding - but this is an assumption is it not?

    We kind of assume I think that those 'left outside' of any 'new' definition will be in a better place almost. Like they will be reassigned to the correct 'pot' and receive more appropriate treatment and support - but what if we aren't included in the new ME 'pot'?

    Anyway, reading that article (and I know of the criticisms and of the chances it may not be implemented) just made me think again about my own condition and what some are calling for in terms of change.

    Careful what you wish for? I dunno. Maybe...
     
  2. alex3619

    alex3619 Senior Member

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    HI Firestormm, I more or less agree with you. Its a real risk, as I have discussed several times before. The primary issue is this: the cardinal feature of the ICC ME is PENE. No PENE, no ICC ME. Now I have yet to be convinced that mild cases of ME always have PENE, its more a manifestation of later stage or more severe ME in my view. Its not that its not there, but that it is so mild it is easy to miss.

    I don't want anyone left out in the cold.

    On the other hand, from a research perspective very good things can come from tightening definitions, and it could reduce the time to a cure by many years.

    Bye, Alex
     
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  3. Ember

    Ember Senior Member

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    Autism makes the cut

    This New York Times article by Amy Harmon, A Specialists Debate on Autism Has Many Worried Observers (http://www.nytimes.com/2012/01/21/us/as-specialists-debate-autism-some-parents-watch-closely.html), is of interest in the context of Julie Rehmeyer's interview this week, David Tuller untangles the research history of chronic fatigue syndrome (http://www.theopennotebook.com/).

    David Tuller couldn't get his article, Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale, published and had to post it instead (http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/):

     
  4. caledonia

    caledonia

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    NBC news reported that the new definition would make the autism epidemic go away....
     
  5. Ember

    Ember Senior Member

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  6. alex3619

    alex3619 Senior Member

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    Hi caledonia, that kind of happened to CFS didn't it? CFS is just CF, and CF is just depression or lack of exercise, so CFS doesnt really exist, its depression or deconditioning. Later they added psychosomatic versions. Water it down till it means nothing, then dismiss what it has become. This autism issue is the opposite - the problem is for research a case can be made for multiple tight definitions to stratify the cohort, but this does not mean it has clinical significance until after there is more science. All too often a new research definition gets confused with a clinical definition, or vice versa. The real problem is this: are the health outcomes improved in the new proposed definition of autism? This requires at least a pilot study, followed by a large scale trial - presuming its well designed. If they are just trying to prove their claims then it will most likely be badly designed. Making sweeping changes without evidence is the kind of thing that creates more problems and increases costs. Bye, Alex
     
  7. Vitalic

    Vitalic Senior Member

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    Wasn't the case for me, PENE was the main issue from day one and continues to be, with a gradual decrease in the level of exertion required to trigger it. I had identified the trend of becoming ill after exercise before I'd ever heard of ME.
     
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  8. Snow Leopard

    Snow Leopard Hibernating

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    Maybe we need to accept that perhaps like the Autism spectrum, CFS is a heterogenous spectrum and that ME (along with Hep-C fatigue, cancer fatigue etc) are all subsets?

    Edit - actually, there is something that I missed when I first wrote this message. The main downside of this tightening of the autism diagnosis is the denial of treatment to borderline cases right? Are there conflicts of interest at work here?
     
  9. natasa778

    natasa778 Senior Member

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    Absolutely! In theory (behavioural) treatments and support are provided according to need, not diagnosis, but in practice this principle often flies out the window. I would not for a second think that this change is being driven by desire to speed up research into causes and pinning down treatments. On the contrary - by cutting down on numbers of diagnosed children and thus 'proving' that there is no real epidemics of anything, it will be even harder to argue for research funds to go to anything other than the usual same old same old genetic and eye-gazing crap.
     
  10. Firestormm

    Firestormm

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    Morning,

    I wrote this on the other forum earlier - so am reposting. I think Snow Leopard that is one of the fears being expressed by parents and advocates yes. As I try and say below - it's a bit like comparing this 'tightening' to the welfare benefit changes happening in the UK I think - some will presume they are all for the better whereas they clearly are not.

    http://www.mecfsforums.com/index.php/topic,11206.msg130344.html#msg130344

    'I think it is a point worth considering that 'tightening' criteria (and not to mention redefining to some extent - including the name (or perhaps better justifying it?)) could be compared to the decisions recently by the UK Government to shave 20% off welfare costs whilst then going on to say they are making the system 'fairer'.

    In the case of autism (of which I have no experience or knowledge really) and ME and/or CFS (which I do as a patient and not a professional) a 'tightening' of diagnostic criteria does not mean that those who 'fail to make the grade' are not still ill or indeed that the so-called psychiatric-bias will apply only to them.

    If 30-40% of patients currently with a diagnosis the same as my own are able to receive the 'new' diagnosis of ME by way of the ICC - then I would hate to think that those 'left out in the cold' become the 'undeserving'. I know this is all hypothetical and some might think therefore that seeing the ICC accepted is I suppose overdue recognition - but what becomes of those left behind? Or those on the margins? Or even those that are included for that matter?

    Unlike - apparently and unfortunately - Autism, CFS/ME under the ICC has not (to my knowledge) gone through the procedures necessary to determine the extent to which existing patients might 'fit' the criteria or even if the criteria are 'sound' - and therefore I was rather surprised to learn that the Norwegian Directorate had seemingly adopted it as their preferred diagnostic tool.

    Whereas this Autism work is ongoing and will - I sincerely hope - be critiqued professionally and involve patient representatives (perhaps wishful thinking?); the ICCME to my knowledge has not. And yet we await a physicians guide to using the ICCME? It just seems wrong (or perhaps too assuming).

    I mean I 'like' the ICCME but I don't think that is enough by any means and it is certain (I would say) that without due critique the ICCME will not be accepted by those whose willingness to use it in e.g. research as well as diagnosis, one would need to gain.

    In the past when what I suspect many would consider was the 'true' ME (though those 'criteria' were not universally accepted or adopted of course) was used as a diagnosis by some now famous specialists; we went from a narrow (I suppose) definition to increasingly less specific ones seen by some as being too broad.

    At this point I can't see that the ICCME will become accepted as a distinct disease definition and criteria. Not without a great deal of work and supporting study. Indeed, if anything more work needs first to be carried out on existing patient cohorts to better assess commonality and try to establish clear areas when tests reveal commonality.

    There could, I suppose, be a point that is reached when what we now recognise as ICCME or parts therein becomes a defining segment or 'pot' within the overall 'CFS' cohort - or perhaps there are indeed graduations of this condition that need to be better realised - precisely because and as has been said - certain 'key' symptoms may not always be present or are present but not to the same extent.

    So separate and distinct disease definitions or smaller 'pots' within an embracing and broadly defined one? I guess we will have to wait and see, but what is happening to Autism - regrettably - will I think necessarily happy to my condition at some point and perhaps it is overdue.

    I would though like more work done on the ICC and comparisons made with the CCC ME/CFS and Fukuda beforehand I think.'

    Edit:

    I thought this was interesting too (referred to this by a friend since posting):

    'The only prevalence rate I have seen for ME/CFS (CCC) was 0.11 or 0.12%. I have seen a prevalence rate of 0.19% for Fukuda CFS, but mostly it is estimated between 0.3 and 0.4%. This means that dropping CFS in exchange for ME would mean that between 40% to 70% of patients would be left out of the pot.'

    http://www.pugilator.com/awareness/the-icc-for-me-are-finally-published-whats-next/

    Again, and hypothetically that is a lot of potentially disappointed folk out there assuming they will see it that way of course. But comparing ICCME with CCCME/CFS and Fukuda would be a good way (one of the ways) to proceed and I am surprised (perhaps) that something similar has not been proposed for Autism.

    Edit x 2 :rolleyes: : There is one HUGE assumption of course. And that is that the ICCME is not simply a REPLACEMENT for what has come before i.e. that far from leaving such potentially large numbers of existing patients on the sidelines (so to speak) it doesn't absorb all of us (or the vast majority anyway).
     
  11. alex3619

    alex3619 Senior Member

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    Hi Firsestormm, first I agree that the ICC ME needs to be tested and compared further.

    Direct comparison between CCC ME/CFS and ICC ME is not necessarily easy though. The ICC ME has a category called Atypical Myalgic Encephalomyelitis in which the patient must have PENE but only needs two additional symptoms. What does that do to the percentages? Nobody knows, which brings me back to your point - this needs further study.

    I like the ICC ME. I think its a step forward. The international scientific and medical communities are going to require time to understand the full impact of it if adopted, and to do that they need to see research in which it is actually used and so have a basis to assess how useful it is.

    Bye, Alex
     
  12. Ember

    Ember Senior Member

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    According to Dan Peterson, the CCC is now the most used and accepted clinical definition for our disease. It creates the purest cohort with the least psychiatic co-morbidity, and it's used in most clinical trials now. So I don't understand the great concern about moving from the CCC for ME/CFS to the ME-ICC. I suspect the concern is mostly about changing the name of our disease, a kind of identity shift. By contrast, nobody seems terribly concerned about moving from Reeves to Fukuda and who might be left out of CFS in that context.

    It would seem to me best if the CDC would leave Fukuda more or less intact in the US and simply adopt the ICC for the purpose of diagnosing ME. That way, those with CFS would continue with their current diagnosis until a more specific diagnosis can be given.

    NHS Scotland has taken that kind of approach in recommending that the CCC be used to diagnose ME and separate it from CFS. In Scotland, those with CFS continue to be diagnosed as before, using the NICE Guidlines. The ME-ICC authors themselves write that individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome. They don't suggest abolishing the Reeves or NICE criteria for CFS.
     

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