5 responses to “The PACE Trial: an analogy

  1. Brilliant! I have used the diabetes analogy with an ME friend to convince her that she needed to treat her symptoms seriously but without the cleverness of taking the analogy to such clear, thought provoking conclusions. Well done you!
    blakey x

  2. Genius….having severe ME, not only does this clearly explain to those who tell me PACE is good news for me that it clearly is not, but also concisely explains the premise of the trial so that I can adequately explain it without brain fog getting me confused…thank you. Really.

  3. Yes, and how about we define diabetes in such a way that only persons with the most severe symptoms (who would never consent to such a trial in the first place) actually have diabetes. So unless you fall down dead, side effects of increasing sugar in your diet are in your head.

    I get that doctors are trying to move away from prescribing bedrest for people. That does sound pretty miserable and there are conditions that you can overcome if you actually get out of bed. Think Elizabeth Kenny & polio. But I think the real problem is that it’s really hard to understand the gravity of CFS/ME unless you have it. It’s not impossible; but you definitely have to make an effort to really get to know someone and understand the ins and outs of their life.

    I’ve written a lot about this on my blog. One doctor I have who has been profoundly understand spent a significant amount of time in medical school babysitting chronically ill children and teenagers. He said encountering people in day to day life completely changed his perspective. If getting out of bed and walking across the room is laborious, “exercise” should be about incorporating movement or muscle strengthening or whatever into your existing routine.

    You know how new moms walk and rock their baby at the same time or carefully watch their diet? You can’t just tell them that you need to work out for 45 minutes three times a week otherwise you’re a terrible person. You try to figure out ways in which they incorporate a healthy diet & call doing the laundry exercise. Because you certainly can’t just throw the baby out with the bath water.