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1st ME/CFS Canadian Collaborative Conference

Discussion in 'General ME/CFS News' started by strategist, Feb 12, 2018.

  1. Alvin

    Alvin Senior Member (Voting Rights)

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    It was a good talk, though only peripherally related to ME/CFS
    I felt it will be more relevant when we have more treatments available, though its one that more GPs should be attending in regards to their non ME/CFS patients.
     
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  2. Helen

    Helen Senior Member (Voting Rights)

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    Thanks @Alvin. Agree. Do you know if his claim is confirmed by a study, or was it just from his experience that he "knew" this as a fact. I got the impression that he told that PWME had more of genetic problems with detoxification than healthy people. I never heard before that this had been studied. If it even had...
     
  3. Alvin

    Alvin Senior Member (Voting Rights)

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    I don't recall him saying that (then again my memory is shot), his talk was basically a warning to be aware that taking multiple medications can cause dangerous interactions and side effects and that long term use of drugs and especially multiple drugs can also harm patients, which really applies to anyone, someone i know was on Prednisone for decades leading to severe osteoporosis, something that was very preventable.
     
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  4. Milo

    Milo Senior Member (Voting Rights)

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    I believe there as a meeting about the Canadian Consensus criteria. But i was not sick back then. It might have been 2003.
     
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  5. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I thought one of the IACFS/ME conferences was in Ottawa, something like 2011? Early on in my daughter's ME life.
     
  6. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Yup. It's a survey!
     
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  7. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    If memory serves, 1989 and 1991.
     
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  8. Andy

    Andy Committee Member & Outreach

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  9. Trish

    Trish Moderator Staff Member

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    I have just read the report and picked out this as of interest in assessing severity levels in ME patients:
    I have not heard of anyone using 'hour of upright activity as a severity measure. It seems like a potentially useful one to me.
     
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  10. Alvin

    Alvin Senior Member (Voting Rights)

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    Its not. I am moderate/severe yet her scale would count me incorrectly.
     
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  11. Trish

    Trish Moderator Staff Member

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    Thanks @Alvin, that's interesting. I was basing my comment on the sentence I quoted, I haven't seen the detail of how she uses it. Perhaps it's only relevant to those pwME who have a major problem with orthostatic intolerance. Can you explain more?
     
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  12. Alvin

    Alvin Senior Member (Voting Rights)

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    I don't remember it well but she was presenting a scale she thought would quantify severity by time spent in bed vs sitting or standing. I do more sitting then her model would account for and while i lay down often for a few mins here and there i am upright for more hours then the scale would assume given my severity.
    Its not a bad idea but i don't think it would be an ideal official diagnostic tool
    My OI seems to be less then average, though its more then i thought, i have gotten used to it and mitigate it reasonably well.
     
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  13. Jenny TipsforME

    Jenny TipsforME Senior Member (Voting Rights)

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    So also sitting upright? Although I can be up, as in not in bed I don’t tolerate sitting upright feet on floor (at a dinner table type sitting) for very long. I can pass as normal for about an hour doing this and then have to move to a sofa with my feet up as I get a lot of pain or lightheadedness. Scale seems like a good idea based on my personal fluctuations (if in combination with other measures).

    @Alvin when you sit, is it upright feet on floor sitting?
     
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  14. Alvin

    Alvin Senior Member (Voting Rights)

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    I'm sure it has merit but some have worse OI then others, i would guess severity vs OI might work better on a bell curve then trying to correlate severity to OI. I could be wrong but thats my personal view.
     
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  15. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I sit mostly in a recliner, so feet off the floor! Like Jenny, I struggle with my feet flat on the floor for any length of time, so HUA might be a useful measure for me, personally.

    If we are supposed to keep our feet off the ground, though, it would be nice to have a study exploring that. Not to measure HUA necessarily, but to give us another tool for pacing properly. That is, of course, if the supposition is correct (which it may not be).
     
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  16. Trish

    Trish Moderator Staff Member

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    I think this may be a case of a measure that is useful for an individual to track their own progress, rather than one to compare the severity of ME in different individuals.

    So for example, if I look back at my progression from mild through moderate to severe, HUA would provide a useful graph with a downward slope as the overall trend, with short and long dips along the way for PEM and bad crashes. I kind of wish I did have such a chart. It would be a great way of visually illustrating the pattern of my declining health.
     
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  17. Pechius

    Pechius Senior Member (Voting Rights)

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    Can someone tell me if the conference was filmed ? Does anyone know anything about the future availability of recordings? I tried to email the organisers, and asked on twitter, but nobody replied.
     
  18. Andy

    Andy Committee Member & Outreach

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    Don't think this has been posted elsewhere?
     
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  19. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  20. Pechius

    Pechius Senior Member (Voting Rights)

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    Does anyone have an idea about main conference recordings?

    Website says:
    "Thank you for your interest in the conference. We will notify you as soon as the recordings will be available."
    https://www.fourwav.es/view/647/info/

    It's taking quite a long time. I wonder if they will ever be made available. All my attempts to contact organisers via email or twitter were unsuccessful.
     

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