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Old thread on deconditioning, by oceanblue at PR

Discussion in 'BioMedical ME/CFS Research' started by Sean, Sep 6, 2018.

  1. Sean

    Sean Senior Member (Voting Rights)

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    Been some discussion here of late about deconditioning. So it seems timely to recall the (now inactive) thread on it started by oceanblue way back in April 2012, over at PR. In particular oceanblue's excellent summary comment.

    Obviously been a fair bit of water under the bridge since then, especially on the research front. But it is still informative and insightful, and useful background info at least.

    @dave30th, @Jonathan Edwards
     
    Last edited: Sep 6, 2018
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  2. Hip

    Hip Senior Member (Voting Rights)

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    One severe bedbound ME/CFS patient on Phoenix Rising (who also has Crohn's) used once weekly doses of corticosteroids like prednisolone to completely obliterate PEM, and by this approach he was able to visit the gym and engage in vigorous aerobic exercise once a week (but this only works if you do the exercise within around 4 hours of so of taking the prednisolone). See the bottom of this post.

    This is quite amazing, because for the rest of the week he is bedbound. After a year of these weekly gym visits facilitated by prednisolone, and after slowly building up his cardiovascular fitness, he found that his POTS symptoms disappeared. But all that exercise had no effect on ME/CFS symptoms, he said.

    So that anecdote would tend to argue against deconditioning playing a role in ME/CFS.
     
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  3. andypants

    andypants Senior Member (Voting Rights)

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    My POTS always gets worse after long periods of being bedbound, but my ME symptoms are usually reduced by the same.
     
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  4. Barry

    Barry Senior Member (Voting Rights)

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    "So it appears that while some patients are deconditioned - and those that are bedbound must surely be - many patients are not deconditioned yet still have CFS. This does rather rule out a primary role for deconditioning in perpetuating the illness."
    [My bold]

    Which is exactly the case for my wife I'm certain. As I've said before, I'm sure my wife is much fitter than your average couch potato. Her problem is not lack of fitness - it is lack of available energy supply to utilise the fitness that she has! If you were to take a top athlete, and in some way seriously obstruct of the flow of energy to their cells, then you would have a person at peak physical fitness, incapable of doing anything much ... because to do anything you need energy. It doesn't matter what the obstruction mechanism is - physical obstruction to the transport of energy, control (i.e. regulation) malfunction so less energy is made available than is needed, energy not converted fast enough in a form that is useful, whatever - if the energy is not supplied fast enough for what is needed, then the fittest person in the world will be floored. You can have the fastest most souped up car in the world, but if the fuel does not get to where it's needed fast enough, you end up with a very expensive door stop.
     
    Last edited: Sep 7, 2018
  5. Mij

    Mij Senior Member (Voting Rights)

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    Some ME patients (me) have enough 'energy' to go out for a 30 minute run/workout and feel perfectly normal, but the next day PEM is almost deadly- PEM has nothing to do with deconditioning.
     
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  6. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    There was a thread earlier this year about a Vice article, which featured the journalist spending 70 days in bed for science

    https://www.s4me.info/threads/how-i-felt-after-70-days-of-lying-in-bed-for-science-2015.3588/

    https://www.vice.com/en_uk/article/jma83d/nasa-patient-8179-200

    The article is oddly comforting. In showing that someone who didn't move at all for 70 days could return to absolute normal within 2 weeks, which honestly kind of surprised me. Whenever I fear I am starting to suffer from deconditioning, even though I still walk around the house, and move up and down the stairs multiple times every day with absolutely no effort. I always remind myself of this article, and that forcing myself to do all those unpleasant forced walks outside, which leave me feeling terrible, isn't a good use of my limited energy.
     
    Last edited: Sep 7, 2018
  7. Barry

    Barry Senior Member (Voting Rights)

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    Whilst PACE etc premise that the mindset of PwME prevents them doing what is needed to recover for year upon year.
     
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  8. Michelle

    Michelle Established Member (Voting Rights)

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    I've always thought the PACE study was actually a good study in ruling out deconditioning as the cause of ME/CFS. The 6-min walk test is a terrible test to show any improvement in a group of patients with a disease that is highly variable from day to day. Having someone walk for 6 minutes one day, then come in a year later and do it again is very unlikely to yield any useful information -- unless you didn't see any real improvement in their performance. Which, of course, is exactly what happened. If these patients were simply deconditioned, you would think after a year of graded exercise, they would be performing far better than they had originally. The fact that they didn't -- unless they all happened to be in PEM that day-- suggests deconditioning has nothing to do with this disease. I've never understood why we didn't hound that point into the ground.
     
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  9. Sisyphus

    Sisyphus Senior Member (Voting Rights)

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    Agreed about the six minute walk test. It’s really like spitting on the patients; what useful life activity can you do by walking for six minutes? Go out your door, go do ONE simple errand and come back. Can you do that in six minutes? It’s as if the test is designed to avoid touching on any of our landmine areas.
     
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  10. Mithriel

    Mithriel Senior Member (Voting Rights)

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    This really made me angry. The Mythbusters TV programme did a few shows that involved walking speeds and for each they did 10!!! tries and averaged them so they could get a more accurate result. A TV show, not a 5 million pound scientific trial published in the Lancet!!!
     

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