Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Article: The 'E' Work by Jennifer Spotila

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 18, 2010.

  1. George

    George waitin' fer rabbits

    South Texas
    I think that was beautifuly put UrbanTravels!!!!!
  2. L'engle

    L'engle moogle

    Likewise! Now it is easier to for others to forget we were ever 'tough'... there must have always been some weakness of character present... easier for them than admitting something could take away their illusion of having power over their body and life.
  3. jspotila

    jspotila Senior Member

    Day before I got sick: 45 minutes on an inclined tredmill at 5 a.m. before working a 12 hour day.
    Day I got sick: could barely walk six blocks home from work

    And my doctor at the time told me to keep going to the gym. It was just a virus and I would feel better in a couple weeks. That was 16 years ago.
  4. Cort

    Cort Phoenix Rising Founder

    I think that was wonderfully put at well. CFS causes people to do the opposite of what our society expects - and what a stressor that is simply to explain that. People with FM are in the same boat. People don't get that pushing too hard breaks a system that has ALREADY been pushing too hard for far too long.
  5. Cort

    Cort Phoenix Rising Founder

    It just makes want to cry to hear things like that- actually it does make me cry. As Shakespeare said "Oh what a fall was there"....What a fall.....
  6. Rafael

    Rafael XMRV+ Member

    Ontario, Canada
    OK, I'm only 2 weeks behind ....
    I always wondered if I was the only one that experienced much LESS increase in Heartbeat ... the more exerted I was.
    Say in morning .. I do a little exertion .. typical hb from 72 resting to say 90 then after resting back to 72, ok, then
    Later in afternoon ... I do the same level of exertion as in a.m. (or less) ... My heartbeat would go from say 65 to 68 and then afterwards to 60 or less. Before crashes this effect would be most extreme.
    My theory was that since our aerobic (mitochondrial function) was impaired (mine was, severely, as measured by Acumen/Myhill) ... then there really was no call for extra oxygen since it couldn't be used Aerobically anyways.
    But the people in this article must think or observe differently ... otherwise HB as a guide can be completely misleading.
    Is there anyone else that experienced the "non-demand" for oxygen = heartbeat increase.
  7. AliceZ


    Thank you for providing this article. It has really helped me understand much better what is going on with me, and exactly how little my energy use must be to avoid overexertion. Using the guidelines in the article, I basically can't get out of bed before I reach 10% below my anaerobic threshold, so using the guidelines for exercise is out for me. However, I picked up a heart rate monitor and am using it to provide feedback during my daily activities, letting me know when I need to stop doing something, with the goal of setting my alarm lower and lower so that eventually I can get down to the AT range discussed in the article.
  8. jspotila

    jspotila Senior Member

    AliceZ, you are doing exactly what the Pacific Lab advises. "Exercise" means any activity for people with CFS. Using the heart rate monitor to help you know when to stop doing something is precisely the purpose. At the very least, this method can help some of us reduce the severity and/or length of crashes. I hope it works for you!
  9. Dolphin

    Dolphin Senior Member

    Staci Stevens devised the exercise component in a four-armed trial led by Leonard Jason as well as being involved with over-seeing it in the trial:
    It's available at:

    It didn't do particularly well. The pacing arm did better.

    Just because an exercise program is different or sounds plausible, doesn't mean anyone should assume it will work. Like many others, I've tried all sorts of treatment regimes that I thought might work and sounded plausible but didn't work or didn't work that well. It's fine of course to throw out ideas.

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