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Australian "PACE" type trial?

Discussion in 'Latest ME/CFS Research' started by ukxmrv, May 10, 2013.

  1. ukxmrv

    ukxmrv Senior Member

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    I''ve been hearing about a soon to be published trial by an Australian University (UOW) on CFS and treatment with exercise.

    Details are scetchy but I thought a new thread may be useful that we can add info to as it comes to light.

    An initual report from a patient on another closed group says that the trial has finished and the paper due soon. It claims to be about CFS but that none of the (poor) recognised criteria have been used.

    The trial contrasts several types of exercise therapy - one arm by a physiotherapist, another by someone who uses graded exercise and another by someone who exercises the group under a specified heart rate measure.

    There is no practical measure at the end apart from a medical examination of some sort, some sort of test of their movements and a blood pressure monitor reading.

    The criteria for the intake group is that they must have the following symptoms

    1. Pain
    2. Weakness
    3. Insomnia
    4. resting pulse rate over 100bpm

    and that patients were not excluded for any mental illnesses. An exclusion that was applied was to people with low blood pressure.

    This of course, could be entirely wrong in any part (or the whole part of course!)

    I've been mulling over this today and wondering which group they were trying to select and why?
  2. alex3619

    alex3619 Senior Member

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    It depends on what group is doing the testing I think. I have heard rumours of this research, but know little. We do have a few pain units that research this kind of stuff. It might not be a coincidence that pain is listed number one, or is that just how you wrote it down? In any case I wish they would use activity monitors or VO2 max testing, or even better the Stevens test.
  3. ukxmrv

    ukxmrv Senior Member

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    I think Alex that it just how I wrote it. Get the impression that it was the >100 BPM that was the most important.

    Question is why? and what population will they select with that criteria?
  4. alex3619

    alex3619 Senior Member

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    Why with at least mild tachycardia? There are obviously looking for something specific.
  5. ukxmrv

    ukxmrv Senior Member

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    That's what I thought Alex. Why the BPM of over 100.

    Is anyone aware of any papers that would link CFS with a high resting heart rate?
  6. alex3619

    alex3619 Senior Member

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    This has to be fishing for a subset. Most of us do not have a high resting heart rate, unless we have clear POTS ... in which case why not diagnose POTS?
  7. ukxmrv

    ukxmrv Senior Member

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    I heard that a patient who was part of this study died. It will be interesting to see if they report this at all.

    Have no idea what the cause of death was or which part of the study they were in. May be unrelated of course. Just something to follow up.
  8. WillowJ

    WillowJ Senior Member

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    but if they have POTS, wouldn't they have low BP (unless it is ok sitting in a chair?)

    The Australian CFS criteria doesn't generally exclude any psychiatric-classified disease.
  9. ukxmrv

    ukxmrv Senior Member

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    Willow, I don't have any further information on the BLOOD PRESSURE side of things apart from seeing a post from someone who claimed to be a patient on the trial who said that people with low blood pressure (as opposed to the HEART RATE BPM) were weeded out.

    I'm confused as to what they were studying and why. There is supposed to be a theory being examined somewhere.

    The only thing that I can think of is that they have been looking at the exercising under your HR would by Klimas - but why pick a population with a high resting HR.

    (I have low BP but not a high resting HR so would have been excluded if my information is correct)
  10. alex3619

    alex3619 Senior Member

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    Those with POTS typically have low bp but high beats per minute. However this is not universal: some with POTS may have high bp, though I cannot confirm this. I know some with NMH have high bp though, because I am one of them.

    The Australian CFS criteria is not often used for research so far as I know, its a clinical definition. PHANU doesn't use it in any case, again so far as I know. I think Fukuda has been used here quite a bit over the years.
  11. ukxmrv

    ukxmrv Senior Member

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    Alex. this was resting BPM.

    When I was dx'ed with POTS it was the change between resting and standing. For these patients it was purely their resting rate which confused me.

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