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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. Bob

    Bob

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    Insearchof, I've brought your quote over from the other thread because I think it's more appropriate to discuss it on this thread.

    Thanks insearchof, for sharing your views on these issues. I find your views very interesting and helpful.

    First of all, apologies for this enormously long post... It's a subject that I'm very interested in exploring, but I understand if other people don't have the energy or the same interest in it, so I'm not making assumptions that people will be inclined to engage with this.

    I think that most of our disagreement about these issues probably comes from the different way we use the terms 'ME' and 'CFS'.
    Both the terms can be used in a strictly evidence-based sense; or also a political (official) sense; or a personal sense.
    For example, I believe that I suffer from 'ME' and that's how i refer to my illness. But I am officially diagnosed with 'CFS/ME'. And if I lived in the US, then I would probably be officially diagnosed with 'CFS'. I have never been officially diagnosed using the strict definitions of 'ME', but I still refer to my illness as 'ME'.

    When I talk about the 'ME community', I'm talking about it in a practical sense, and I not talking about people who purely have an actual 'ME' diagnosis.
    From a UK perspective, when I talk about the 'ME community', I'm actually talking about ME patients who only have a 'CFS/ME' diagnosis.
    In the UK, a diagnosis of 'ME' is not available, unless, possibly, if you go private. But almost no one goes private in the UK, so there isn't an 'ME community'. So when you talk about an 'ME community', there isn't one in the UK. Not when using official nomenclature.

    So when you talk about an 'ME community', based on diagnostic definitions for 'ME', in the strictest scientific sense of the term 'ME', then where is this 'ME community' that you speak of? We don't have one in the UK at all. And I suspect it is a tiny, minute, community in the USA and Canada, only for those who go and see specialists such as Dr Bell or Byron Hyde. So I don't know where you would find an 'ME' community, unless self-diagnosed, or one of the fortunate few patients of Bell's, Hyde's etc.

    So if you don't have an ME community, then how can you make changes in the ME community?

    The way that I see it is that the disease 'ME' doesn't officially exist at the moment, in a wider practical or political sense, either in the USA or the UK.
    Governments are blind to it, society is blind to it, many scientists are blind to it.
    Officially speaking, ME only truly exists in the WHO classifications, medical history books, old research papers, and a very very small number of clinicians, with probably just a hundreds of patients between them.

    Only 'CFS' and 'CFS/ME' officially exist, in a wider practical sense, in the USA and UK at the moment.

    So my opinions are coming from a place of practicality and pragmatism for the wider community who are diagnosed with 'CFS' in the USA, or 'CFS/ME' in the UK.

    I believe that making incremental changes to the CFS and CFS/ME diagnosis is more likely to move us towards the ideal situation for ME patients in a shorter time frame, than attempting a make an immediate change to the ideal political situation for ME patients.

    I believe that we are more likely to take patients, scientists, researchers, advocacy groups, governments etc. with us, if we advocate for incremental or step changes to the current situation for the CFS diagnosis.

    And in the current political climate, almost everyone with 'ME' gets diagnosed with 'CFS' or 'CFS/ME'.

    So when I talk about using the CCC as an improvement for the 'ME community', what I actually mean, is that I think it would be an improvement for all those patients who have 'ME' but are currently diagnosed with 'CFS/ME'.


    This is why I wanted us all to have this conversation, because every time someone talks about 'ME' or 'CFS', we all mean different things.

    You only refer to 'ME' in the very strictest sense, whereas I often use the term 'ME' to cover everyone I know who has a 'CFS/ME' diagnosis in the UK, and a 'CFS' diagnosis in the USA.
    If I were to refer to the 'CFS community', then many people would think that I was only referring to people who have idiopathic 'CFS', so I usually refer to it as 'ME'.
    I'm now trying to have more clarity and accuracy in my use of nomenclature.


    The changes that I am proposing for CFS or CFS/ME definitions are aimed at making the lives of both CFS and ME communities better. I see this happening because I believe that if the CCC, for example, were used for a CFS definition then this would bring benefits to the ME community through more specific criteria being used on a vastly larger ME patient population (i.e. ME patients with a CFS diagnosis) than currently is the case. Most ME patients have a CFS diagnosis in the USA, and all ME patients in the UK have a CFS/ME diagnosis.

    I referred to these communities as an 'ME community' because I know that I, and the people I know, have 'ME'. But officially speaking, I should refer to the 'CFS' or 'CFS/ME' community.

    So, yes, when I suggest using the CCC, it would apply to the current 'CFS' community in the USA, and the 'CFS/ME' community in the UK, if we are using official nomenclature. Of course, when using the official name ('CFS' community), this would include patients with undiagnosed 'ME'.


    I believe in taking a pragmatic approach forwards for our wider community, which will take all the patients, researchers, scientists, governments etc. with us in making incremental changes that would benefit our community.

    I acknowledge that you (I'm going to attempt to paraphrase you, so please correct me if I've got your position wrong), believe that nothing except the strictest interpretation of 'ME' is permissible, in a political and wider practical sense, and anything else goes against us.




    My opinion is that it would be a stepping stone to less confusion than the current political situation, but I agree that it's not an ideal situation.

    Yes, I agree that it would continue to bury ME in CFS, but in my opinion it would be a better situation than we have now, in the political sense.

    If I truly believed that we could take everyone with us (patients, advocacy groups, scientists, researches, the medical profession, and governments) in one large step to make everything as it should be for ME patients, then I might agree with your approach to this issue.

    But I think you are mistaken if you think that would be immediately possible, without incremental changes.

    I think that incremental changes are the only realistic way we have of making changes.

    I understand what you mean when you say that the CCC should only be applied to the 'CFS community', and not the 'ME community', but then we need to define what the 'CFS community' is. If we define the 'CFS community' as everyone who currently has an official diagnosis of 'CFS', then this would include a lot of 'ME' patients. So in this case, practically speaking, the CCC would also be applied to patients with ME.


    I think that I am approaching this issue from a mainly pragmatic and practical perspective, whereas you prefer to approach it from a strictly scientific perspective. As long as we are both clear about exactly what we mean, then I think we agree with each other on the facts, but differ slightly about the way we would expect to implement changes for the CFS, CFS/ME and ME communities.


    I believe that most of the disagreements on the forum about this subject arise from mixed and confused use of the terms 'ME' and 'CFS'. for example, you might be clear in your own mind about what you mean by the term 'ME' and 'ME community'. But like I said earlier, your definition of 'ME community' is different to mine. And my definition of 'ME' is anyone in the UK with a 'CFS/ME' diagnosis. I should be more clear about what I mean.
    When i talk about the 'ME community', I'm referring to people with 'ME' who mainly have a 'CFS' or 'CFS/ME' diagnosis.
    Like I said earlier, I'm going to be more careful with my words now, so this thread has been very useful to teach me that.


    Everyone has a different approach to this, and that's why I set up this thread...
    For example, the IMEA, are proposing scrapping the term 'CFS' and replacing it with the term 'ME', which I don't disagree with, but then that leads to all sort of arguments about what diagnostic criteria should be used, and what happens to people with CFS who don't meet the new criteria. These things need to be thought about.

    And their proposals also lead to the other discussions we've had on this thread, about people with mild ME, or recovered ME. How do they fit into the proposed diagnostic criteria?


    No one seems to be having those discussions in our community, except here in this thread.

    I agree.


    ISO, Would you acknowledge that the scientific situation and the political situation are two entirely different things for people with ME?



    Thanks for the discussion ISO. I appreciate that you might not be able to fully respond to this ridiculously long post.

    ISO, I do acknowledge and understand all the discussion points that you have made.
  2. insearchof

    insearchof Senior Member

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    Hi Bob


    Bob

    There is a lot of confusion and a general lack of understanding in this thread on ME and the use of SPECT within ME and generally, how medicine operates.

    Medicine does not operate in a vacuum. It seldom uses any test to diagnose without reference to other factors. Today, patients may expect and medicine would ideally like, a test that does this, with 100% specificity and sensitivity for that one illness alone - but that is not the reality. Sadly, we live in a world so technologically advanced in comparison to our parents and grand parents, that we believe that this expectation is valid.


    Consequently I strongly disagree that an immense amount of work is required to be done using SPECTs as a diagnostic aid in ME. In the context of the medical literature on ME, they are not promoted as a sole definitive test for diagnosing ME at all. In point of fact, ME was diagonsed successfully prior to SPECTs introduction.


    I understand though, to someone that does not fully understand the context of the subject matter - it might appear that an immense amount of work might be required, but that is in fact not the case.


    Here is the summary I posted on the other thread.


  3. Bob

    Bob

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    I've finally got around to reading some of this paper...
    I find the categorisations that Jason has proposed, above, quite helpful.
    I'm not sure about the 'atypical' category, because it just seems like 'mild' CFS to me, rather than a different kind of 'atypical' CFS.
    I've got much more to read.
  4. Bob

    Bob

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    Then why is everyone arguing about SPECTS then, if they aren't important?

    If not a lot of work medically and scientifically, then definitely a lot of work needs to be done politically.
    I don't think that the political situation is going to change until government funded research dollars are pumped into ME research.
    I don't know what the situation in Canada is, but the USA and the UK are not going to realistically adopt ME science in the short term.
  5. insearchof

    insearchof Senior Member

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    Hi Angela,



    That was my theory (and not just mine, as I pointed out) of the community as a collective - not directed towards individuals. I was sharing it - I dont think I was preaching, but if you choose to see it as such, and want to sit in the pews - feel free.

    I'f I was preaching -when was that a crime? Preaching can also refer to campaigning - which we need a lot more of in my opinion. By the way, given that your quite into analyzing peoples argumentive style etc, 'preaching'' in the way you used it, is fairly denigrating. Another form of shooting the messenger perhaps? But I am not really interested in this sort of discourse, because it is purely deflective.

    ISO
  6. insearchof

    insearchof Senior Member

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    Bob

    Finally...thank you.........I asked this question a while ago - on the other thread - I asked Dolphin - why she was going on and on about SPECTS.

    It is not that they are not important or useful - but they have been promoted as the sole diagnostic tool that in and of itself, will distinguish ME from CFS or another illness. This is not correct.

    I concluded that the reason for this, was due to a lack of understanding and a failure to see them to their proper context in ME and the practice of medicine generally.

    People might read a little on ME from one or two articles that Hyde has written but dont go looking at the historical medical literature, or they read a little of Hydes work, without reading more widely on his work, and then they seize on a couple of choice words by Hyde, ie will only define ME with a positive spect - and then incorrectly assume - that this is the sole and definitive diagnostic test for ME etc.

    Having said that - Hyde would know though, how well they work to detect evidence of CNS in ME patients - as distinct from other tools and he has probably found them to be more useful. They are also more accessible and cheaper than PET scans apparently. Further, for the purposes of litigation, he is definitely not going to comfirm a diagnosis without all the evidence he can get. So to say he does not confirm a diagnosis of ME without a SPECT - would be understandable in that setting.

    Absolutely.....which includes awareness raising on these matters.

    ISO

    ps:

    Its been hard - because of the dual threads and my trying to play catch up - which I am still doing :(
  7. insearchof

    insearchof Senior Member

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    Hi Angela


    Mikovitz has because of the fact that it was a new finding. Its hot and topical. ME is not, as you well know.

    I may be mistaken, but I was under the impression Hyde had tried. Why not write to him and ask him and/or encourage him to do so - if this is usch an issue for you?

    In the meantime, we can work with what we have - agreed: both CFS definitions for CFS research and ME definition in existing literature, for ME research.

    ISO
  8. insearchof

    insearchof Senior Member

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    Hi Dolphin


    Dolphin please read my posts to you previously, including the one on the other thread which is posted also at Bob at post 142 above.

    Beyond that Dolphin, I cannot help you with your lack of comprehension on the matter I am afraid.

    ISO
  9. insearchof

    insearchof Senior Member

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    Hi Dolphin


    I am only interested in their diagnosis, not their personal views of Hyde.

    Some people..... may not like him challenged

    No Dolphin, most people do not mind a discussion of his work in its proper context and with someone who actually has knowledge about it. What people dont like is unnecessary personal attacks on the man himself.

    For example, how is the following even relevant to the science on ME, Hyde's scientific work on ME or our discussions on this thread?

    You then make reference to the hero worshiping of Hyde by some - again, how is this relevant to the science we are discussing? In any event here is my reply - which I posted in response to this made on the other thread:


    Dolphin, you then go on to say this:



    Heres an idea, instead of you trying to prompt others to put pressure on Hyde to publish - (even though there is already 50 years worth of scientific published peer reviewed literature that already exists on the subject that you could use) why not approach Hyde yourself - if it is so important?
  10. insearchof

    insearchof Senior Member

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    Hi Bob

    I know that this thread has a lot of information in it and there is a lot going on - its hard for me to keep up with, so I imagine that it must be more so for you.

    I did address that point Bob in the post from which you refer (#122 here: http://forums.phoenixrising.me/showthread.php?10017-Diagnostic-Criteria-can-we-resolve-our-community-s-differences/page13


    As for XMRV making the discussions redundant as well as my theory - I think you might find otherwise.

    Not everyone in the community wants to see XMRV being confirmed Bob. As I mentioned, whilst some org's across the world have issued statements on the matter, others have remained mute and some publicly stated that it would be a mistake for their members to engage in politically lobbying on the matter!

    There are those within the community and the org's - that do not like the association of XMRV to HIV/AIDS.

    The moment it is confirmed however, the org's and all those who are fearful of this state of affairs - are going to be forced to deal with it.

    Not all persons will receive a +XMRV/MLV diagnosis. Lombardi et al test was based on the CCC CFS criteria and those tested were amongst the sickest of CFS patients. Given this, it may well transpire that persons with this positive test result will be regarded as having a HGRV and will no longer qualify as a CFS patient -remember - CFS is a syndrome - a syndrome is a collection of symptoms the cause of which remains unknown. Once the cause of most of your symptoms are identified - problem solved - and you are treated for that illness accordingly. However, the percentage of those from the overall community - that test positive, might be a relatively small number. It is hard to say, but it is a possibility.

    Alternatively, if XMRV is found to be the cause of CCC CFS - then those who have a CCC CFS diagnosis - and XMRV is found to cause CCC CFS - then it might transpire, that CCC CFS disappears, with CCC CFS simply being recognised as the end product of XMRV ie CFS is to XMRV what AIDS is to HIV. But that would require proof of causation - and that wont be without its problems because of the breadth of the definition.

    If CFS survives as a criteria, then those who do not test positive, will remain within the CFS criteria. And so for these people, the issues, and these discussions will remain alive.
  11. Dolphin

    Dolphin Senior Member

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    Good point

    It shouldn't be forgotten that Byron Hyde has published very very little in peer reviewed journals. Replication suggests to me it has been published before.
  12. Dolphin

    Dolphin Senior Member

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    Whatever the level of Byron Hyde's influence, I think he would have a much bigger influence if he published in peer reviewed journals more. As Angela, myself and probably others in this thread have said, one can't get that far quoting what individual doctors said in many situations - one is expected to reference published research.
  13. insearchof

    insearchof Senior Member

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    As stated on the other thread, publication of Hydes work will not add - in any significant way - to our understanding of what ME is and how to diagnose it.

    His studies on SPECT might provide interesting reading but that is all.

    Further as stated, he has been busy seeing patients across the world, lecturing/raising awareness, writing, consulting to governments, running the Nightingale Foundation, raising funding - pretty much on his own in the last few years. Mikovitz has been a busy woman but has not had to juggle half these things on her own. People expect him to publish and continue to do all these things - but whilst your supporting the WPI, how many of you are actively supporting the Nightingale Foundation? Those who hold these expectations - are you doing so or are you simply content to hold these expectations and criticize?


    ISO
  14. insearchof

    insearchof Senior Member

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    Dolphin

    Re your post at #151 - I note you over looked #142, #144 and #146 .

    ISO
  15. Dolphin

    Dolphin Senior Member

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    I am reading this list chronologically. I have nearly caught up now. I was replying to Bob so I don't feel I did anything wrong in that message.
  16. Dolphin

    Dolphin Senior Member

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    I find this a strange statement to make.

    At the moment, it is hard to refer to much of what he says as it hasn't been published.
    And in particular, how specifically SPECT scans may be used and how accurate they are can aid clinicians, health systems, etc.

    Medicine has changed from decades ago. Expert statement has a lower value and if the experts are no longer alive to make their case in a discussion, it will likely have lower value again unless what they found has been published or it promted others to publish research along similar lines.
  17. Dolphin

    Dolphin Senior Member

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    Around a week ago, I asked specific questions about the SPECT differences found in M.E. (what thresholds, etc.) - sickofCFS asked a more general question along the same lines.
    I don't believe either of us have received a specific answer to this question.

    I have had various things on but I have now looked at four SPECT scan
    papers:

    -----
    The thing that comes out is that different findings were found in different studies. It is not clear how contradictory they might be. Also, in the second Schwartz paper, there were a lot of similarities between the CFS patients and the depressed patients. In the Costa study, the average difference in the brain stems when one excluded those patients who also had depression (as well as patients who had other psychiatric disorders).

    As I said, average differences do not necessarily translate to differences at an individual level.
    For example, in Mena & Villanueva-Meyer, of the 6 regions assessed, there was only a statistically significant difference in the Right temporal region
    59.3 +/-14.1 vs 69.2 +/- 3.2. This means that the CFS patients are only 0.7SD away from the mean of the healthy controls i.e. a reasonable percentage are likely to have similar scores to healthy controls.

    So it is still unclear to me which tests are supposed to be used faced with an individual patient (e.g. Schwartz counted deficits while Costa and Mena measured perfusion).
    It is certainly unclear to me how good these studies would be for everyone (i.e. the sensitivity and specificity, the "bread and butter" of tests).
    As Bob have said, more research needs to be published in the area.



  18. insearchof

    insearchof Senior Member

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    Dolphin


    I have answered your question on both threads now re spect scans......maybe when you catch up in your reading ie posts I referred to above the penny might drop......and if it does not, I am afraid I can't assist you in aiding your comprehension of the subject matter on SPECTS any further....other than to say....it might be a good idea to start researching the history of ME and read widely. You really can't be expected to run before you can walk. Nothing will be clear to you unless and until you do this.


    ISO
  19. PhoenixDown

    PhoenixDown Senior Member

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    It would none the less be a better state of affairs to sub type these illnesses based such scans, until light is shined on more comprehensive evidence. For one it would help change attitudes toward these illnesses which would have a great positive impact on patients, in some cases preventing permanent or long term damage that arises from ignorant attitudes.

    Edit: shone/shined/whatever
  20. WillowJ

    WillowJ Senior Member

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    of course. I'm in favor of using all the tests which have been shown to demonstrate pathology in any of our patients.

    Additionally, any way we can stratify/subgroup based on robust evidence is good with me.

    ETA: I'm not actually aware of any robust evidence for anything which we can use to definitely say we know this ME patient to be qualitatively different from that one

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