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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. Dolphin

    Dolphin Senior Member

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    You had already highlighted them:
    An interesting thing was that the findings with the MRI were consistent over time but not with the SPECT scans - some people with the latter had them on the first time but not the second test and vice versa.

    It also made clear that the definition of abnormality they used was somewhat arbitrary and another paper had used a different definition.
    Also the locations for the abnormalities in the second paper were similar to the depression cohort.

    These were authors who did say the abnormalities suggested a biological process.
    Anyway, I'll need to see more evidence to see how good they are in M.E. specifically. For example, I had relatively mild M.E. for the first few years - would it have shown up I wonder.
  2. Angela Kennedy

    Angela Kennedy *****

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    Well no. Are we talking Holmes or Fukuda? Oxford? Australian? I can't access the pdf which is why I'm asking.
  3. Dolphin

    Dolphin Senior Member

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    It may seem out of place given the thread title but I read them to try to understand what sort of abnormalities are involved in SPECT scans.

    Earlier in the thread, it was claimed:
    but no specific details were given. I think if people read these papers, they will get a better understanding of SPECT scanning (unless they have a good understanding already that is).
  4. Dolphin

    Dolphin Senior Member

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    Apologies, I thought it was only one paper you couldn't access and you had got that information about the three criteria from the other one.
  5. Dolphin

    Dolphin Senior Member

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    He didn't make that particularly clear:
    e.g.
    http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

    Also, where is the evidence that this or other imaging is so good? Lots of things can sound good in theory but are not so good in practice: that is one of the reasons one does biological research, to test out hypotheses.

    Also, it is my impression that in this field, abnormalities tend to be more frequent in more severely affected patients.
    So in particular I would like to see evidence before believing that such tests work well for the more "mildly affected" patients.

    BTW, I was talking to the person who saw Byron Hyde yesterday and they said "poetic license" is a very good way to describe not just a bit but a lot of what he says.
  6. WillowJ

    WillowJ Senior Member

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    in regards to how he is cited?
  7. Dolphin

    Dolphin Senior Member

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    No, with regard to what he says. A lot of it I think was to do with the contrast between what he says in lectures in print and then what happens when you are a patient of his. As I said in the other thread, based on what this person said, it put doubt into my head about how definitive SPECTs are in diagnosing M.E. and in general what he says about lots of things.

    It is a pity he hasn't publish research more in peer-reviewed journals so we could be more clear about what exactly he has found.

    Even if everything he says is true, things that aren't published in peer-reviewed journals tend not to hold that much weight e.g. when dealing with those who fund healthcare (government agencies e.g. NHS/NICE, health insurance companies, etc.).
  8. insearchof

    insearchof Senior Member

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    Hi Dolphin


    Yes - correct. That is his preferred method and he has good reason - I already mentioned it when contrasting the SPECt to say the MRI.

    But you know Dolphin, its very easy to make a case by cherry picking statements to support your position - rather than reading and puttting both his statements and material in context. Also, I suggest you read more of his materials.

    I referred you to his recent book - a small easy read that you can buy for a few dollars online. If you have not read it, I suggest you do so.



    Maybe you should ask the FDA who regulates the introduction of the machines before they are put out onto the market.

    Spect machines investigate the operation of the brain and CNS dysfunction. They have done this successfully for at a long time. Like a lot of tests and machines (they need to be calibrated regularly, and used in the correct fashion) they are not infalible. IF your searching for a test in medicine in relation to ME CFS or any other area that is 100% reliable 100% of the time - good luck with that.


    That is your impression and your certainly entitled to form one, and this might be so, but I would rather defer to a man who has spent his life examining them and thousands of ME patients.

    However, any severe aspect of any illness is more likely to be more frequently seen and easier to detect. So what? Its a problem right across medicine, if it were otherwise, we would have tests that could detect the onset of a cancerous cell and introduce treatment much earlier.

    Frankly, it appears to me that you are seeking something that does not exist anywhere - and not only in modern medicine: perfection/infalibility.

    Yes, you stated this on the other thread. I do not hold myself out as an expert on ME, far from it. However I have done a great deal of study and research and my encounter with Hyde, was actually quite the opposite of what your friend reports.

    As I stated on the other thread, it seems your friend was disappointed with their spect result. Did it show CNS dysfunction? Did Hyde confirm a diagnosis of ME?

    And for someone who values scientific evidence, you are placing a lot of stock in a hearsay report of ONE patient.
  9. Dolphin

    Dolphin Senior Member

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    I'm afraid you're going to need to direct me to this also - I don't remember you referring me to a recent book of his, in this thread anyway. I may have skimmed over messages on the other thread at one stage the way things worked out here.
  10. Angela Kennedy

    Angela Kennedy *****

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    Thanks for displaying the references of the three criteria Dolphin. Very much appreciated.
  11. Angela Kennedy

    Angela Kennedy *****

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    Yes. This is a seriously frustrating situation, causing a lot of problems.
  12. insearchof

    insearchof Senior Member

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    I am sure it is not for want of trying. But when you have 25 odd years of denialism, how many journals do you know would want to publish on ME?

    Maybe he and Judy Mikovitz could share their frustration ''over a cold one'', as we say here.
  13. insearchof

    insearchof Senior Member

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    Hi Dolphin,

    It was on the other thread but will repeat it here: Missed Diagnoses - Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, Hyde, B MD 2009 Lulu.com online publishers. I think it sells for around $10.

    ISO
  14. Bob

    Bob

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  15. Bob

    Bob

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    This discussion about SPECT scans is very interesting, and it would be really helpful to see more widespread research with SPECT scans.

    But my feeling is that Byron Hyde is a local clinician, local to Canada, without a wide scientific, medical or patient following.
    If SPECT scans are to be widely used, then there is an immense amount of work that needs to be done with them, and also an immense amount of work using the Nightingale Definition of ME.
    And until that research is carried out, however successful/specific/accurate SPECT scans are, they are not going to be used as a diagnostic tool by the wider medical profession or the wider scientific research community.
    Wide scale studies of SPECT scans would need to be carried out using a broad selection of ME patients (i.e. 'broad' meaning selected from different geographic areas and from different clinicians.)

    To truly test the SPECT scan theory, we would need some double blind studies to be carried out using other clinicians' patients. For example, the WPI's cohort, or Dr Bell's patients, as long as they meet the Nightingale Definition of ME.
    Sorry, I've not read through the papers yet so I'm not certain if Hyde has done successful double blind trials, but I've never heard Byron Hyde mention carrying out any blind coded trials. If he had, then I'm sure we would have all heard about it (i.e. what percentage of patients he successfully diagnosed using SPECT scans in a double blind trial.)
    Until such trials are carried out and published, and replicated by other researchers, the SPECT scans cannot, and will not, be widely used for diagnosing ME.

    It's not that I'm against his research. I've got a huge amount of respect for Byron Hyde, and I recognise myself in the Nightingale Definition, but his work is just not going anywhere fast, in reality.
    I first heard Byron Hyde give presentations about 5 years ago, soon after I became ill, but since then, I've never heard any other researcher talk about Nightingale, Ramsay or SPECT scans.

    The direction of travel for change in the CFS-diagnosed communities seems to be more towards the CCC, which seem to have quite a widespread following at the moment.
    I support work on ME using ME-specific definitions, but in my opinion we are not going to see a sudden swing to ME-specific research any time soon. I think that the change is going to come from CFS-diagnosed communities (which includes ME patients.)

    If the SPECT scans and Nightingale Definition are a very exclusive way to select patients, then I wouldn't mind them being used as a research tools.
    But I would like to know what percentage of CFS/ME patients (i.e. CFS + ME patients in the UK, who all get a 'CFS/ME' diagnosis, or CFS + ME patients in the USA who get a 'CFS' diagnosis) meet the 'ME' criteria using the Nightingale Definition and SPECT scans.
    If they only select a very small percentage of CFS/ME patients then I think I'd have a problem with it personally, because of the massive political and patients issues that this will cause, as discussed earlier in this thread.

    My issue with such specific/exclusive diagnostic criteria is partly because I am of the opinion that ME (as diagnosed by Ramsay/Nightingale) is very widespread in people with a CFS diagnosis. I might be wrong about this, but I would want to see a lot of research before anyone convinced me otherwise. For me, there is the issue of mild ME, which in my opinion has symptoms that can be mistaken for idiopathic CFS. I would want to know how successful Byron Hyde is at separating mild ME patients from idiopathic fatigue patients.

    This is a very interesting discussion about whether SPECT scans are useful of not, but I don't think we can get any real answers until full blinded trials have been carried out, and replicated by clinicians in other countries.
    It's the same as the XMRV discussion. There's no real answers about XMRV yet, until further studies are published. It's all just opinion at the moment.

    So as usual with ME/CFS, unfortunately there's so many questions and not so many answers.

    (But I don't mean to be dismissive of the discussion... It's very interesting, and helpful.)


    ETA: I've just read Angela's post on the other thread, where she also discusses some of these issues:
    http://phoenixrising.me/forums/show...E.-Association&p=168708&viewfull=1#post168708
  16. Bob

    Bob

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    Hi insearchof,

    I hope that you are not feeling embattled at the moment, with this thread and the other thread...
    You seem to have a few of us arguing against you, against some of your opinions, but I'm sure that other people agree with your points of view.
    It's valuable to have you fighting your corner here, because I think it's helpful and important to explore all of these issues.

    So please keep posting!
    Bob
    :hug:
  17. Angela Kennedy

    Angela Kennedy *****

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    I get the problem with the issue of publishing in a culture of denialism, certainly. However, it would nevertheless help if Hyde published in a peer reviewed journal. It would be interesting to know if he has tried. Mikovits has published, of course.

    In the meantime- we have to work with what we have available to us. Finding CC cohorts that can be differentiated from the 'Oxford' cohorts to research should be a priority for all scientists working on ME or ME/CFS, and highlighting the flaws in Oxford cohort research and its failure to identify ME could be written and submitted for peer review also. Sadly, we just don't know if this is being done.
  18. floydguy

    floydguy Senior Member

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    PEM

    I have to disagree with those that are so supportive of PEM. PEM is primarily a symptom and not easily measured. Any critical components of a ME definition must be things that can be relatively easily measured and be at the root cause of the disease. This leaves measurable things like immune dysfunction and CNS/ANS abnormalities. We must get away from anything remotely close to being vague like fatigue, malaise, etc. Otherwise, tired people without immune and cns issues will continue to pollute the ME waters. I can easily see a bastardized definition of PEM on a checklist from the CDC that could end up applying to Olympic athletes.

    The bottom line is nothing should be in the definition that can't be easily tested. Otherwise, it will have to be mandatory to go to the University of the Pacific (or similar) for that testing. But that doesn't seem very practical.
  19. Dolphin

    Dolphin Senior Member

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    Well it's the Nightingale definition which mentions that he won't diagnose ME without a positive SPECT scan.

    I don't know if your rhetoric above convinces you; it doesn't convince me. The FDA didn't approve the machines as something that diagnoses M.E. for example or finds the CNS dysfunction posited to be in M.E.

    What convinces scientists, etc. is published research not mentions of authority, whether they be Dr. Hyde, the FDA, etc.
  20. Dolphin

    Dolphin Senior Member

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    In the first SPECT paper (Schwartz et al., 1994) it says:
    This suggests the number of defects does correlate with severity.


    It is not my definition of M.E. that requires abnormal SPECT scan results.

    Also it may not be anything close to 100% for mildly affected - so it's not just about perfect, it could be pretty low for them. It might not even be that good for moderate cases.

    I was mildly affected for over 4 years (perhaps one could say 5 - was going downhill in that year). If I had been diagnosed I don't think I would have become severe - it was the lack of diagnosis that led to me not getting time to rest, etc. I don't see it as ideal if the ultimate aim/the ideal scenario is to have a definition of M.E. that wouldn't be likely to pick up less severe cases and tells doctors that the M.E. diagnosis can't be made without such-and-such an abnormality until we have good data that the test is fit for purpose.

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