New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Subtyping Patients with ME and CFS By Course of illness (Dr Jason and team)

Discussion in 'Latest ME/CFS Research' started by Kati, Jul 12, 2017.

  1. Kati

    Kati Patient in training

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  2. Kati

    Kati Patient in training

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    In looking at table 1 in the article, disability rate ranges from 40% to 69% across all groups. Quite telling.
    Their cohort consists of 77%-90% women across all subgroups.

    FullSizeRender.jpg
     
  3. pattismith

    pattismith Senior Member

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    getting married may not be beneficial (50% are constantly getting worst), I may think about changing my status :lol:
     
  4. RogerBlack

    RogerBlack Senior Member

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    Looking at the mean age, minus time since illness puts the mean age of diagnosis at 25.
    That seems high.
    (I know this is statistically inaccurate.)
    It is a shame that age of patient reported onset is not reported.

    I need to re-read the paper when I'm awake.

    This is a review of data they obtained from other scientists.
    Showing the importance of sharing data freely.
     
    Last edited: Jul 12, 2017
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  5. Webdog

    Webdog Senior Member

    Agreed. Decades can separate onset from diagnosis.

    Another thing: this disease can change "subtypes". I would described it as "relapse/remitting" for the first 22 years, then "fluctuating" for the next 17 years. Not sure how a patient like me would be classified in this study.
     
  6. RogerBlack

    RogerBlack Senior Member

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    As I understand it, it's at time of report.
    Which yes, is a problem.
    It is _INSANE_ that modern trials don't get approval for 'light touch' contact of patients.

    Being able to ask the ~700 people by email/... even if that has logistical problems even a 5 question multiple choice questionaire would have enormous benefit.

    For the above study, for example 'has your work status changed', 'when do you believe your illness first started', 'has your illness progression changed since you reported it was X', 'are you better or worse than then', ...
     
  7. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I thought exactly this. Even for the short period I have had this I would say that the first year was constantly getting worse, then when I started pacing and doing less the second year constantly improving, for the 3 years since then fluctuating.

    it seems this is a little open to interpretation? I think sub-types can only be determined by biomedical profiling to make any sense.

    The biggest fact that was shocking was how little were working as opposed to retired or on disability. I thought it would be higher for the mild\moderate split.
     
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  8. RogerBlack

    RogerBlack Senior Member

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    I have not properly looked.
    But, from my skim of the paper, there is significant risk this is biased.
    The samples in question were point-of-time studies of people mostly in secondary care clinics.

    If you're stable enough to be working, then you will 'rapidly' in most cases stop going to a secondary care clinic and fall off the books.
     
  9. trishrhymes

    trishrhymes Senior Member

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    Thing I noticed was that the small group described as constantly improving had the lowest proportion who suffer from PEM. In other words very few are constantly improving, and some of them probably don't have ME. A bleak picture.
     
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  10. hixxy

    hixxy Senior Member

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    If 1.9% are constantly getting better without being relapsing remitting shouldn't they no longer have ME?
     
  11. RogerBlack

    RogerBlack Senior Member

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    Eventually, but not perhaps at that moment. You can be constantly climbing a hill without having reached the top.

    I've raised before the question of if anyone truly gets better.

    If you can't do a marathon (whatever your time) and then do another in 5 days (again, whatever your time) without getting PEM (you will of course get many symptoms that in some ways mimic it), you've still got CFS.
     
  12. Kati

    Kati Patient in training

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    Hi @RogerBlack this sentence is confusing to me, what are you trying to say?
     
  13. Chrisb

    Chrisb Senior Member

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    I think most of us would settle for the PEM if we could run just the one marathon.
     
  14. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Speak for yourself...I've always hated running. :p
     
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  15. RogerBlack

    RogerBlack Senior Member

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    Makes sense to me.

    Anyway.
    If extreme exercise causes atypical physical responses beyond normal reaction to exercise, and brings back ME/CFS symptomps, you're not cured. And the question is, in that case, are people who are 'cured' at really high risk of relapsing again, even if they don't do the extreme exercise, with a stress, virus, or other challenge.

    This is assuming that experiencing PEM is correlated with the risk of relapse.
     
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  16. Kati

    Kati Patient in training

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    Dr Bell said a few years ago that his long time patients who believed they were 'back to normal' were not recovered but they simply learnt to live within their limitations.

    However you (not specifically you, @RogerBlack) will notice that the 'constantly improving' group is N=10 amongst 541 total study participants. A very small fraction.
     
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  17. hixxy

    hixxy Senior Member

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    I think I'd end up hospitalised doing a marathon even pre-illness.
     
  18. RogerBlack

    RogerBlack Senior Member

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    'Exercise to complete exhaustion' might have been a better way to put it.
     
  19. Dolphin

    Dolphin Senior Member

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    Though there was no difference on the energy quotient compared to the other groups i.e. the ratio of energy expended compared to energy available.

    It is quite possible that a lot of the people constantly improving wouldn't have taken part. But it could be interesting how small this group is.
     
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  20. Dolphin

    Dolphin Senior Member

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