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Australia: MindFood: Misdiagnosing ME

Discussion in 'General ME/CFS News' started by Firestormm, Jul 23, 2012.

  1. alex3619

    alex3619 Senior Member

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    Hi peggy-sue, I love your story about the Prof! :D One of the problems that occurs in these arguments, from my experience with philosophers, is that they use highly specialized alternate definitions for things that help keep their thinking in check. When talking to them and they use a word, such as "context", it may not mean what most people think it means. I also agree with you about the science. While it is not true to say that all such degrees have very little science, I know of some that have a lot of neuroscience content, but psych has been dominated by babble for too many decades for every subject of every degree to be grounded in hard evidence.

    One of the longest disagreements I ever had (it was never resolved) was about "meaning". In the sense I use "meaning", I intend for it to be similiar to understanding. To a philosopher it is related to truth values. To a linguist its related to definitions. I had a signed statement on the wall of a profs office at my university, which stated my opinion on something (and I still think this is correct): "The Rosetta Stone had no meaning until sombody deciphered it." Meaning, as in understanding, has little to do with symbols. Its in the brains and culture of people. Its something we create. To get meaning from text you need a symbol-brain-culture interaction. Culture of course exists as memories in the brains of people.

    We simply do not know enough about the brain to make the kinds of diagnoses that some psychiatrist like to make, including hysteria and functional somatic syndromes. The fact that so many schools of thought in psychiatry exist should be a wake-up call to the profession that its mostly hypothetical - but while some acknowledge that they still act as though it were based on hard evidence.

    Bye, Alex
    Valentijn likes this.
  2. peggy-sue

    peggy-sue

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    "We simply do not know enough about the brain to make the kinds of diagnoses that some psychiatrist like to make, including hysteria and functional somatic syndromes. The fact that so many schools of thought in psychiatry exist should be a wake-up call to the profession that its mostly hypothetical - but while some acknowledge that they still act as though it were based on hard evidence."

    Exactly :thumbsup:
    Enid likes this.
  3. Ember

    Ember Senior Member

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    Then you're mistaken. Some of your comments seem disingenuous and dismissive of an ME diagnosis.
    Response by the International Consensus Panel:
    Pacing is proposed for ME. Though GET may sometimes be useful in treating CFS, it is contraindicated in the treatment of ME.
  4. Firestormm

    Firestormm Senior Member

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    The monkey study, (yes Alex was asking me about that), I understand was in respect of what was thought to be a transmittable virus (and one that was capable of going back and forth between species), and when only two monkey's were cut up there were some findings of 'red spots' along the sciatica. Shame this doesn't appear to have been followed-up on or mentioned elsewhere in other outbreaks:

    PELLEW, R.A.A. & MILES, J.A.R. (1955) Further investigations on a disease resembling poliomyelitis seen in Adelaide. Medical Journal of Australia, 42, 480.

    Did not Wallis's work refer to an outbreak in the lake district? Again though I think both these studies are talking about specific outbreaks that might not be applicable to today's dilemma of large patient cohorts not necessarily stemming from those outbreaks or outbreaks generally.

    I did find this article from the BMJ which referenced the monkey-study, that I hadn't read before:

    Endemic Myalgic Encephalomyelitis (over two pages): 3 June 1978: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/?page=1

    And it does talk about there being in a minority of cases frank neurological signs observed on close examination.

    I don't really know what impact or importance can be given to these studies when considering where we are now. Surely research in the past 50 years would have established clear evidence of inflammation that would endorse the use of the term on modern cohorts of patients and to my albeit limited knowledge it hasn't. Indeed I find it quite telling that research has not gone in this direction, when you'd expect it to have done.

    The quote from Ember above refers only to the study of what I think was only 4 autopsies. And the BMJ letter I referenced above referred to only two, and one of those was found to have Multiple Sclerosis and the other is not mentioned - presumably because it didn't reveal anything unusual.

    No if we are to establish that modern patients are experiencing the effects of significant neurological inflammation then specific research needs to be carried out and it seems that this can only occur pathologically. But the message appears to be that clear neurological signs are not being reported that warrant even further investigation.

    If there is inflammation of the brain and/or spinal cord causing the symptoms we experience then it seems subtle as do many of the reported abnormalities generally. But as I said perhaps with the establishment of tissue banks and the ability of patients to undergo autopsy and have samples taken on death, something like we have seen in those few instances, will be revealed to play a greater role.

    In the absence of this I can't see how a clinical or research criteria for Myalgic Encephalomyelitis specifically will be accepted or will serve to improve our chances of better treatment. The research has to come first.

    Apologies for the font-size. My whatsit is playing up.
  5. Ember

    Ember Senior Member

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    The research has to come before the research criteria? I think you got that backwards.
  6. Firestormm

    Firestormm Senior Member

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    No. Not at all. It is only presumed at this stage that the ICCME without testing, will result in a distinctive ME cohort of patients. Whereas for example the CCC has been proven to provide a far better cohort of patients than what occurred before. And don't forget all these old studies did not rely on any criteria - they were looking at 'outbreaks'.

    No research has been conducted on even a cohort of patients using Fukuda that has demonstrated inflammation to any degree, let alone significant, even in a minority of patients, and the same is true of CCC. The ICCME is essentially claiming the criteria will identify cohorts with ME without demonstrating encephalomyelitis even exists in any sub-cohort.

    That study you referred to from Chadhuri and Shepherd did not use ICCME for example and it was a very small study. Until such time as research demonstrates clear and significant occurrence of inflammation in a cohort of e.g. ME/CFS CCC then in this respect I simply cannot see ICCME being accepted as defining a patient cohort with inflammation.

    Look at it another way. Say the ICCME comes into force. It assumes that all those left behind, do not have inflammation and all those included, do. How can that be when there is no evidence to support that assumption?
  7. Valentijn

    Valentijn Activity Level: 3

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    My own personal experience suggests brain inflammation. I realize that's not as convincing as a study, but I think it's more reliable than assuming their is no inflammation based on a lack of studies.

    I had a headache pretty much constantly in the early weeks of being sick. If I take fish oil, the headache goes away after a day or so. If I stop fish oil, the headache comes back. Every time. Since fish oil is involved in reducing inflammation, and it makes my headache go away, it's seems plausible that inflammation is causing the headache.
  8. Ember

    Ember Senior Member

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    Both the ICC and the CCC are ME definitions. Why so much focus on the name? Are you invested in supporting the NICE Guidelines?
  9. Firestormm

    Firestormm Senior Member

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    The CCC are guidelines for what we have: ME/CFS as are the NICE Guidelines. Personally, I prefer the Canadian criteria as I feel the NICE Guidelines are too loosely interpreted - although with any diagnosing doctor - if he is worth his salt and has experience of our condition then he will better ensure those he diagnoses do not have alternate diagnoses without recourse to any criteria specifically.

    ME/CFS or CFS/ME - it makes no difference. the '/' means either name is acceptable. It is recognised 'even' by the World Health Organisation that 'ME' is connected to 'CFS'.

    We are now in 2012. The research has not in all this time determined a distinct/significant neurological cause for patients with a diagnosis of our condition, not one that fully supports the encephalomyelitis definition - but they acknowledge that our condition is neurological with other systems playing a likely role.

    The NIH http://grants.nih.gov/grants/guide/pa-files/PAR-12-032.html has, as I said, has now moved to a position that echoes both what the British have gone - to some extent - and what the Canadian Criteria exemplified.

    Indeed if you look at that link to the NIH's open call for research proposals you will see that they have really recognised more than what has been the case in the UK - or rather compared to the MRC, the NIH are more detailed in their appraisal of what could be involved in causing our debilitation.

    Saying that the ICC and CCC are 'ME definitions' appears to shoot your previous argument in the foot. The main argument - there are more - for not doing away with CFS as a name is that research has not proven inflammation. Back in the day when I was diagnosed, 'ME' was the only thing to diagnose with.

    That changed. We are now in 2012. And calls to sub-categorise or replace 'CFS' with 'ME' still need to address the main criticism - the one about inflammation. The rest of the ICCME is trying, in my opinion, to jump before the research supports a move.

    The CCC had not even been accepted as a research definition as a replacement for Fukuda. It appears that CCC has influenced the IACFS/ME Primer (though that's my assumption not having read it but seeing as Lenny Jason was an author).

    Now along comes this ICCME trying to do more than the CCC has yet been able to do. I just cannot see that it will be accepted by those whose acceptance is key.

    Not until such time as studies using e.g. Fukuda and CCC, or CCC, reveal the kind of inflammation for example that suggests a cohort of patients are 'different' clinically and pathologically.

    Took you long enough. I'm rather disappointed nonetheless to see you suggest that. Ember - the NICE Guidelines are what we have now. There is a review of them next year (2013) at which time we will see pressure applied from the publications relating to the PACE Trial. That remains a key focus for me.

    I cannot turn back time. We are where we are. I suggested earlier in this thread that maybe in the USA they would have more success with a specific criteria for 'ME' than we ever did over here - I wish them well. But the way things are going the USA are joining us in the same boat.

    The research - so desperately needed - remains very patchy and whilst revealing some interesting findings about the aetiology of those with our diagnosis, has failed to specifically determine what is causing it. Until such time as research can influence the NICE Guidelines and the authorities behind them - we have what we have and have to work with it.

    Read that link from the NIH. See how they are at least now acknowledging what might be influencing our continued disability. Until research proposals are forthcoming of sufficient quality and size that identify, e.g. diagnostic markers - we will not move forward with any official guidelines or treatment.

    Attempts to define 'ME' as being something distinct from something else we really don't know enough about - seems to me to be at least premature.
    PhoenixDown likes this.
  10. PhoenixDown

    PhoenixDown Senior Member

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    But you're making a positive truth claim without proof. That's a bad idea. Your experience suggests you have a symptom, without a test or scan you can't "know" that you have brain or spinal cord inflammation.
  11. Enid

    Enid Senior Member

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    Mind - food - anyone know a defination of the mind would be great to hear. Brain function and cognitive problems yes as the old bod (including neural functioning) slows. However like any other pathology can be restored. How come high spots on my own brain scan and loss of all recognition now has better memory than those well all around me.
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Exactly right. Though in principle the position may be even more complex, because although a clinical feature (say inflamation of the meninges, either localised or general) might be present in an identifiable subgroup, the presence of that feature may itself be a product of differing aetiologies across the patient population. Or indeed be a product of a wholly separate disease process which is randomly present as a co-morbidity across the patient population. M.E/CFS may turn out to be multiple illnesses expressed in multiple and varied co-morbidities across the global patient population.

    Ramsay described M.E was (nearly 60 years ago !) a vitally important nosological conception, but there's never been the consistency of evidence to allow a description of "Ramsay's Disease" - what there is, is 6 decades worth of accumulated evidence of an "illness complex" that remains poorly understood. No criteria set, based on gross symptoms is likely (by pure chance) to bracket a definitive aetiology, at this stage a criteria set that ensures a broad selection of patients with a commonality of symptoms is what is needed for research that aims at establishing aetiological processes. Notions of 'true M.E' and 'M.E that is not CFS', are not science based, and even if they were, make no sense as far as medical advocacy goes, where 'coalitions' of the affected are far more effective than salami slicing definitions of who is and who isn't a 'true' patient.

    IVI
  13. Ember

    Ember Senior Member

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    I have difficulty understanding your point of view. To my mind, you often seem to be arguing against the ICC and the CCC and in favour of the NICE Guidelines. Yet this very suggestion seems to offend you.

    You write, “Saying that the ICC and CCC are 'ME definitions' appears to shoot your previous argument in the foot.” Then perhaps you haven't understood my point of view either. I'm not aware of having made any other claim.

    The ICC and the CCC represent one perspective, while the NICE Guidelines and the Reeves case definition represent another. In its conclusion, the ICC recommends that ME patients “should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.” Does this recommendation offend you?
  14. Valentijn

    Valentijn Activity Level: 3

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    Indeed, I don't know. But the contrary (no inflammation) isn't known either, nor is anything else conclusively agreed upon. But it has to be called something, and with the scattered reports of inflammation, ME is as good a name as anything. Though personally I'd prefer we call it "WTF".
  15. peggy-sue

    peggy-sue

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    I used to call it WIG.
    (Whatever I've Got.)
  16. Firestormm

    Firestormm Senior Member

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    NICE = CFS/ME

    CCC = ME/CFS

    ICCME = ME leaving those who don't meet the criteria with CFS

    Calling for a separate criteria based on a 'neuro-immune' disease without having established a sub-set exists that adequately conforms to the ME definition in WHO but relates to the patient preferred myalgic encephalomyelitis nomen; sounds terrific but has no research proving such a specific disease entity exists within even the CCC cohort of patients.

    Put it yet another way. Say the ICCME comes into force and then research reveals that low and behold definitive evidence is discovered of neurological inflammation, but that the cohort of patients it embraces do not feature in the ICCME.

    Unlikely perhaps given that ICCME seems likely to embrace so many (a general assumption) currently defined as having 'CFS' or 'CFS/ME' but it's possible because the ICCME is not based on research it is based largely on a belief that ME exists as a separate entity.

    Similarly, it could be discovered that everyone currently diagnosed using the NICE Guidelines - or a statistically significant majority of them - have inflammation. We just don't know.

    I suspect that whatever is happing in my body it is subtle and involves more than one system. Inflammation may play a role but not the significant role that the WHO definition implied when it was formed based on very limited 'outbreak' evidence.

    Hence I was saying earlier, that if we had our time over again [shudder] I suspect WHO would not have been so specific in their nomenclature or definition, and encephalopathy might now be more relevant, or [perish the thought], CFS would rule the day. Or the research that has made some inroads into both definition, and aetiology would have resulted in more appropriate definition and nomen.

    And all of this is (as you said) only relating to concerns I have over the appropriateness at this time in moving towards a separate criteria and definition for ME. There are of course other concerns with this ICC also, included the one mentioned above - the use of 'neuro-immune'.

    But my main concern at this time is trying to achieve what this sets out without biological markers in place to assist in objective testing. It is frustrating that we tend to see criteria like the NICE Guidelines or Fukuda and think 'they're too loose' and are tempted to conclude that too many people are being afforded a diagnosis when they don't really have what we do. I get that.

    But I also get that the CCC has been demonstrated to be a better criteria for either research or clinical diagnosis. And I recognise that specialists in our condition do not need to refer to any NICE Guideline necessarily to determine that referred patients have alternate diagnoses.

    The problem - in that respect - is that there are not enough of them. There is a significant problem with lack of knowledge among Primary Care Physicians and general in the medical profession. Patients are referred in some number to dwindling numbers of ME specialists who find they have alternate diagnoses.

    This is an education problem and a lack of awareness. The NICE Guidelines might not be perfect, they might need to be supplemented as any criteria need to by expertise and awareness, and cannot be used simply as a tick-sheet, but require doctors to listen to patient history and exclude (as in any diagnostic process) - but I just can't see how the ICCME will help in this regard.

    Or how it might work in the absence of research and alongside for example the Canadian Criteria.

    n.b.

    I wasn't offended in as much as I tend to attract comments believing I am supportive of things that other posters are not. We've talked and talked about the ICCME admittedly not for some time now, but as with other things, I just tend to see what I like to believe are 'practical issues' for want of a better term.

    And there's no getting around the continuing objections to 'myalgic encephalomyelitis' in the medical profession, I suspect on both sides of the Atlantic. Address them and you could be onto a winner and I would certainly welcome some solid research that leads to some kind of conclusive evidence that's for sure. But it will happen without the ICCME and not because of it I think if it is to happen at all.
  17. Ember

    Ember Senior Member

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    Please clarify what you mean here. The NICE Guidelines define CFS. The ICC and the CCC are both ME definitions. Read beyond the hybrids ‘ME/CFS’ and ‘CFS/ME’.

    If case definitions were created in the way that you seem to suggest, then we wouldn't have any. You set a standard for the ICC that isn't met by the other case definitions.

    I'm not frustrated by patients “being afforded” a CFS diagnosis, at least not because “they don't really have” what an ME patient does. I assume that CFS patients are sick and in need of medical care. I want case definitions to better define CFS in the same way that I want them to better define ME.
  18. Firestormm

    Firestormm Senior Member

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    We are at crossed purposes in our understanding and the way in which CCC has been applied in study, it would seem. I will read (re-read) your link tomorrow.

    You see I don't think NICE Guidelines are 'CFS'. How can they be, when you are saying they encapsulate people who really meet the 'ME' criteria and have something distinct?

    This is the problem I have you see. The ICCME are not 'unique' enough. Even (especially) the WHO definition of ME is not relevant enough but if you support the name - as the ICC does - then patients will prefer it to anything else.

    Until such time as research identifies unique elements of clear pathology, that then allow sub-categorisation (fine as a notion but again very hard to hang a disease on when symptoms and likely contributing factors are so similar), the ICCME is still attempting something impractical and unsupported by the research findings.

    And it is about the name. 'ME' and it's classification by the WHO is seen as the be-all-and-end-all by patients. Nobody wants CFS and yet the ICCME is proposing that some of us will not 'fit' without properly defining how or why because there are no objective tests.

    And who's to say if there were such tests, what they would be testing for properly defines one as having 'ME' and not 'CFS'? The ICCME - I don't know - seems to be assumptive and yet wants to cling on to the historical definition.

    CCC as a personal preference went further than what we had and appears to better reflect what ought to be considered by way of criteria. But even this (ME Criteria according to you) has not had the impact patients would like to have seen.

    Unfortunately, the vast majority of research is still based on Fukuda despite Jason's efforts to demonstrate how much more effective CCC is. And now they want to introduce another criteria.

    Let me read your link in the morning. I need me bed. And I'll have another think about it all tomorrow :)
  19. alex3619

    alex3619 Senior Member

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    Mind is about memory, consciousness, emotion and language. All of those things are better understood in terms of brain. To have something in mind is to be conscious of a concept or memory. It is also about how we express our emotions and needs, about what we do. Its about self talk - both verbal and nonverbal.

    Add to this is the notion of the unconscious, which is still considered a part of mind. Most of the brain is beyond conscious awareness: 99.9%+. To a Freudian is this another mind, complete with its own conscious/unconscious agenda. To me its just mechanism, albeit complex and massively interconnected mechanism.

    The concept of mind is very outdated. There is NO aspect of mind that cannot be expressed in terms of brain. If we want science to be as simple as the evidence allows, a concept of mind is then only a convenient model to discuss aspects of brain that are currently not fully understood.

    Hmmmm, theres that problem again. When things are not understood we make it up. Someone sick - must be possessed or witchcraft!. We have a voice in our head - its a little man, an homunculous. No, sorry, its a mind. People are exhausted and have neurological symptoms? They are just wrong headed.

    They make stuff up. Science should get rid of these things, and it probably will in time, but its too darn slow. Superstition is still alive and well in society including the medical profession.

    Bye, Alex
  20. Firestormm

    Firestormm Senior Member

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    Morning Ember,

    Can you please tell me how the ICCME will operate alongside CCC ME/CFS or does it aim to replace it? I am getting now very confused. Thanks.

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