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Diagnostic Criteria - can we resolve our community's differences?

Discussion in 'Action Alerts and Advocacy' started by Bob, Feb 2, 2011.

  1. Nielk

    Nielk

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    I was always under the impression that











    I was always under the impression that PEM is the basic requirement for a true ME/CFS diagnosis.
  2. Dolphin

    Dolphin Senior Member

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  3. WillowJ

    WillowJ Senior Member

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    I think everyone other than the hfme crowd is with you on that
  4. Angela Kennedy

    Angela Kennedy *****

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    Hi Bob,

    I completely get the complications here that you've said, especially around severity of illness.

    ME and some criteria using CFS show infective or post-infective organic dysfunction similar to other infective diseases. A good use of parsimony would address that. The problem has been the the LACK of parsimony: the tendency of doctors to practice fallacious neo-Freudian psychogenic diagnoses by defualt on illnesses they have problems understanding, and the intention of psychiatrists to claim power and status in mainstream medicine by claiming psychogenic causation in many illnesses, but especially those difficult to diagnose. Frightening gender discrimination, historically and even today, has also had a larger part to play in the social construction of illness experiences than people realise.

    You say you believe your depression is different to your 'whatever' (CFS or ME) though? The question is - why? Even with problems with lack of access to knowledge about say, neurological dysfunction, do your symptoms concur with a certain set of criteria, for example? What makes them different to your 'depression' (I'm not asking directly- just making the point, and not using the term 'depression' in quotation marks to be insulting in any way, just to show even this diagnosis can be unsafe).

    Psychogenic dismissal is the elephant in the room here, sadly.

    If, for example, 'depression' in the absence of distressing life events (let's face it, most depression is caused by distressing life events!) has a neurological cause, then it is a neurological disease. If bipolar/schizophrenia are caused by disturbances in the brain, that makes them neurological diseases, not psychiatric, as it turns out!

    But there are many neurological conditions in the absence of mental dysfunction also. Many people have ME/CFS in the absence of 'mental health' problems as such. There are many variances in severity within neurological illnesses also- which, in the absence of the spectre of "it's your disordered mind, love" beliefs, are, in biomedical terms, understandable.

    That's before we even address the problem of what is 'mental illness'? Bearing in mind the psychiatrists' tendencies to psychopathologise what are likely normal responses - and in the case of Canadian or Ramsay defined 'ME' normal responses to distressing illness.

    The complications are there, especially around illness severity. They need addressing - but in a critically deconstructive way. I think this woudl help address most of the inevitable problems uncovered here. But it's a big job of course.
  5. Bob

    Bob

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    Thanks Dolphin...

    Oh, so this is this the paper that I'm still waiting for Jason to publish! Doh! :rolleyes:

    I'd read that Leonard Jason was still working on an operationalized model of the Canadian Consensus Criteria definition that will allow it to be used for research purposes, and so I didn't think it had already been published.

    I haven't read the paper yet, but do you think this is the work that I was referring to? (i.e. "an operationalized model of the Canadian Consensus Criteria definition that will allow it to be used for research purposes.")

    I suppose I should print it out and have a look at it... :(
    (This might be where I go strangely quiet on the subject!!!) (At the thought of reading the paper!)
  6. Dolphin

    Dolphin Senior Member

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    The short answer is that it is:

    -a model of the Canadian Consensus Criteria definition - see title:
    - designed for research - see term "research criteria" below:

    - is talking about "operationalizing" (the phrase "operationally explicit criteria"/similar is used a few times).
  7. In Vitro Infidelium

    In Vitro Infidelium Guest

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    If you want to limit the terms of what is discussed in a thread it would be helpful if you stated upfront what you consider to be permissable. My response was to this specific paragraph as posted by Sickofcfs:

    IF we agree on all the above questions -- which I realize we may well not -- then I suggest that we consider ourselves patients with neuro-immune, or neuro-endocrine-immune illnesses. We might even give ourselves a common name, even if it's not used by the medical authorities, that allow us to work as a group. For example, we might call ourselves, as a group, patients with NEI diseases, or some such.

    There isn’t anyway to answer your question because it is posited in relation to a falacy – it’s not possible to give a reasoned answer without disposing of the falacy, and you are insisting that the falacy (neuro-immune disease = something to which an alternative could exist) is not falacious.

    To be clear, what I wrote was: There is no clinical description anywhere of such a thing as neuro-immune disease and the term seems exclusive to the WPI who apply it to a whole pick and mix of unrelated conditions in the style of the worst psuedo science quackery. That is, it is stylistically comparable to the numerous quack operations who use scientific language to present a non scientific premise.

    What the WPI does is a matter for its Board and its funders, but that’s not the issue I was raising – the issue is what does neuro-immune disease mean ? and the only source for the term is the WPI. What the WPI is claiming about clinical linkage is not clear, but they are classifying M.E within a disease ‘family’ that uses the title neuro-immune disease, and as that term is currently only used by the WPI, the WPI classification has relevance.

    IVI
  8. insearchof

    insearchof Senior Member

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    For Bob

    They are not exclusively used by Hyde and I think you will find some very influential names in the CFS arena use and endorse them too - because they represent the best evidence of damage of central nervous system dysfunction. I have seen numbers quoted by others as something like 80% of patients sent return a positive spect.

    If you have ever seen one - they give an immediate and vivid picture of a lack of blood circulation due to vascular damage etc. As stated earlier, they are more commonly employed for use in litigation.


    Studies:

    The only one I have (but am uncertain if there are others - pubmed search?) is this one:

    1. Mena, I Study of Ceberal Perfusion by NeuroSpect in Patients with CFS

    I think this paper was published in 1991.

    Mena is a world leading authority in the field of Nuclear med. That study also refers to others specifically on the technical aspects of SPECTs but unless your a radiologist or a nuclear scientists, I dont think you will get much joy there.
  9. Bob

    Bob

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  10. insearchof

    insearchof Senior Member

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    Is exercise prior to a SPECT scan necessary to ensure an accurate result?

    For Dolphin

    Dolphin you raised on the other thread the issue that your friend who was sent off for a spect scan questioned the result becaue they were not told before hand, that exercise could affect the outcome.

    I stated that I thought that where a subject underwent exercise before the scan, this would most likely increase circulation and give a better indication of how much flow was getting to the brain and therefore provide confirmation of hyperpofusion or poor blood flow. I also stated my belief, that should a subject be at rest (no blood flow due to little circulation) I would still expect a positive spect - and the condition to be present.

    This is what I have found consulting my notes: hypoperfusion is increased (ie lack of blood flow is more evident) after exercise. This was referred to by Mena in the paper I cited above for Bob and which I coincidentally found referred to in another unrelated paper by Goldstein.

    I also examined the information you referred me to in Hyde's text book.

    For those who don't have access to that - what Dolphin and I were looking at was the display (and commentary) on three sets of Spects taken on a 37 yold patient and interpreted by MENA

    SPECT scans take images of the brain in slices and build up a 3 D picture of it.

    The images Dolphin and I were examining were taken of the same subject at rest (figures 1-3), post exercise (figures 4-6) and 24 hours post exercise (fig 7-9)

    It was a particular type of SPECT scan called an Xeon Spect (just the name of the machine brand I am told) but it is the one Hyde prefers and recommends.



    MY COMMENT ON IMAGES and COMMENTARY MADE ON THEM

    Dolphin, I note that whilst images 4-9 show what is described as ''a significant decrease in perfusion'' and ''severely decreased brain perfusion ...24 hours after the brain has been stressed by physical exercise'', it is also reported that at rest the subjects scans showed prefusion defects, that became ''aggravated'' with increased activity.

    However, these results show that in this patient, there was evidence at rest, of damage that plays a role in hypoperfusion activity. Exercise only seems to show hypoperfusion in action, but there is evidence of damage at rest. Exercise would only show hypoperfusion in action. But if you knew what to look for that would contribute to that ie damage, exercise probably would not be necessary.

    The remarks that accompanied those scans said:

    "The pathological brain changes demonstrated in 1, 2, and 3 (subject at rest) were exaggerated by normal physical activity''

    That suggests to me, that exercise is inconsequential. If pathology is evident, it will show up and will be exaggerated by ''normal' activity.

    I also note that they speculate, that positive spect findings in ME patients might be produced as a result of the following also:

    * sleep deprivation
    * secondary infection (persumably that affects and gets into the brain)
    *cognitive, sensory or emotional factors.

    ISO
  11. Dolphin

    Dolphin Senior Member

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    SPECT scan discussion

    I just read the following paper which is freely available. I was pleasantly surprised that I believe I understood the vast majority of it so hopefully others would also (if not understand more):

    Full free text: http://www.ajronline.org/cgi/reprint/162/4/935
    Here's the conclusion:
    It briefly mentions the Mena and Villanueva-Meyer study:

  12. Angela Kennedy

    Angela Kennedy *****

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    That looks like a mixed bag of patients- and there were only sixteen of them?!
  13. Dolphin

    Dolphin Senior Member

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    The sister paper, drawn from the same group using the same criteria (CDC=Holmes) were used in the following free paper http://www.ajronline.org/cgi/reprint/162/4/943 :

    The researchers did hope to develop them but I'm not sure that ever happened:
  14. Angela Kennedy

    Angela Kennedy *****

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    Dolphin - for some reason I cannot access the paper. But the abstract is saying THREE definitions of 'chronic fatigue syndrome were used to select sixteen patients! What were those three?
  15. Dolphin

    Dolphin Senior Member

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    The same criteria were used for both papers.

    I'm trying to find out what SPECT scan abnormalities there are that might be used as a diagnostic test.
  16. Bob

    Bob

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    To everyone who has posted on this thread, especially recently,

    Some people seem to have very specific, but different, opinions about how ME is (or should be) defined, and I'm interested in exactly what diagnostic criteria everyone would ideally use for ME. So please could you share your views if you are happy to do so?

    Also, would you view the CCC, or similar, as an acceptable temporary compromise, practically speaking, for either clinical or research use, for the CFS/ME community? Or could using the CCC be an acceptable first step towards your ideal situation?

    I refer specifically to the CCC because they seem to have quite a wide recognition factor, and seem to be better known than some of the other definitions. So I think they would be the easiest change that could be pushed for immediately (politically speaking, to use for CFS/ME), especially to use in research in the USA and UK.
  17. Angela Kennedy

    Angela Kennedy *****

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    All three criteria were used for each paper? What were the three criteria? The reason this is relevant is because they look like a mixed bag at best, meaning the usual problems with findings, or lack of such.
  18. insearchof

    insearchof Senior Member

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    CONT of POST due to GLITCHES.............................


    Because CFS by virtue of the way it is defined, is the
  19. insearchof

    insearchof Senior Member

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    Love to contribute, but will have to do so another time. The system has some serious issues. Have tried to alert Adin, without success.
    Have left some of the problems I have been having in the nuts and bolts thread but it looks like its taking time to rectify.
  20. insearchof

    insearchof Senior Member

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    The spect studies are very interesting

    However, it must be pointed out that they relate to a co hort of patients that were selected using CFS definitions, not ME.

    Therefore, the conclusions are not surprising, as CFS on any definition used, is so very wide that it catches a number of persons who have other illnesses. For this reason, the ''cause'' of CFS will always remain elusive - there will never be a consistent singular cause when the definition catches such a diverse cohort and as such, there will never be a single tool or aid that will be found to diagnose it.

    Doctors in the CFS world report high percentages of abnormal scans, as well as on other neurological and non neurological bio markers, and yet - none of them have been accepted as a diagnostic tool for the purposes of CFS. In the absence of proof of causation, they are not likely to be accepted as such and further, in the lack of a clear homogenous group, they are unlikey to ever find causation for CFS as stated.

    What they might find (such as with XMRV) that certain co horts or sub sets within this definition will have certain distinct illnesses, in which a diagnostic tool might be found. Yet, with XMRV I do not believe that that it will ever be accepted as the cause of CFS - only that a large subset within it, have it. I think what will happen is, that persons with a CFS diagnosis will be considered and tested for XMRV and if + you will then be regarded as primarily having a HGRV and treated accordingly. Those who do not, will be left in the remaining classification of CFS. Because CFS by virtue of the way it is defined, is the is the catch all that ''remains thereafter'' group and this is all due to the definition and the fact that the main characteristic of CFS is unremitting fatigue of a specific duration with PEM - which fits a long list of illnesses.

    ME is not characterised that way.

    Consequently, I do not understand why anyone would want to adhere to a CFS definition (CCC CFS) or any other, for research or clinical purposes.




    ME AND SPECT SCANS

    There appears, and I may be wrong, some suggestion that SPECT scans and the results of a SPECT scans are the sole diagnostic test/outcome that determines ME. This is not correct in my view.

    Spects are only ONE of a number of tools that are successfully used to demonstrate evidence of damage to the central nervous system.

    The key feature of ME as *required* by medical literature and existing definitions (by comparing and contrasting med lit in ME with existing CFS definitions) is central nervous system dysfunction. This is a *requirement* in ME but not in CFS (PEM, unremitting fatigue of 6 months - are the key requirements there)

    Evidence of CNS dysfunction can and does show up (including evidence of hypoperfusion) using other tools as well.

    Neurological tools like SPECT, MRI, computer driven EEGs, PET etc and cognitive testing are not mutually exclusive tests.

    Further, all tests - on their introduction into the clinical market place, might meet high levels of specificity and sensitivity for their required uses, will not always return 100% accurate results. No test results are infalible. That is why Hyde and others do not rely exclusively on SPECTs when making an ME diagnosis - it is only one test used to detect CNS dysfunction. It also provides a physican with feedback to determine if a SPECt for example, that was questionable, might require being repeated.

    CNS dysfunction does and will appear on other tests.

    ALthough Hyde has stated that he will not generally diagnose ME without a positive finding on a spect (but not hard apparently, as most ME patients do return a positive spect based on his years of research) - what you need to understand is, that this does not mean he and other physicians will not do so.

    They also consider:

    * findings on other tests that show evidence of CNS dysfunction as well and consider the outcome of all tests collectively.

    * As I understand it and have read, Hyde will repeat a SPECT scan - especially where the other results and clinical signs and symptoms suggest ME - because - as with any test - there are factors that may, from time to time, return a false finding.

    Finally, the thing to remember about Hyde, is that it is his general practice not to confirm a diagnosis of ME without a positive SPECT because his patients are largely those fighting insurers and are involved in litigation where legal evidentiary standards require the highest levels of proof.

    So he makes sure he has a water tight case.

    His patients are almost exclusively those that are invovled in the litigious process.

    Outside of that process however, I am sure that he would not demand a SPECT if there was the same evidence of CNS dysfunction on one or more of the other tests.

    The other reasons he prefers SPECT say to an MRI (just for the purposes of illistration as it is a technology most people know about and readily accessible) is probably because:

    *it is cheaper than MRI for example
    *MRI does not always show ME pathology
    *MRIs are nosiy and can cause ME patients distress and a deterioration in health

    As for understanding the distinctions between ME and CFS (CCC CFS etc) I suggest you start by reading this: http://www.hfme.org/testingforme.htm



    ISO

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