The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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GET not improving fitness in PACE surprises me: any views on what happened?

Discussion in 'Latest ME/CFS Research' started by Esther12, Feb 3, 2015.

  1. Esther12

    Esther12 Senior Member

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    This is a really trivial thing that's just been bugging me.

    This is how they measured fitness:


    results: ____________________________APT_____________CBT___________GET___________SMC only___

    PACE data for step test.JPG


    Edit - @Dolphin pointed out what a poor choice I'd made with the results presented, and more complete ones are available here:
    PACE fitness data.GIF

    Few patients reported being actively harmed by the form of GET tested as part of the PACE trial, and adherence to therapy was reported as being good. Assuming GET did no real good, and any improvement in patient questionnaire scores was just down to problems with bias, I'd still expect some improvement in fitness for GET just from patients substituting in exercise and dropping off other forms of activity.

    I find that if I choose to prioritise exercises I can increase them by putting less energy into other tasks. Also, I often find that this does mean that I can improve my fitness and the amount I can do of a particular exercise. (This has led to me wasting much too much of my time on different forms of exercise/activity as a treatment, as for the first six weeks or so I am able to steadily increase what I can do, just from having practised a particular routine and developed particular muscles, rather than receiving any real improvements in energy levels).

    If GET were not actively harming patient's health (and it seems that in PACE it largely was not, even if it was wasting there time and part of a system which causes problems elsewhere), how could adherence to a programme encouraging the prioritisation of exercise not lead to improvements in fitness in a group which starts with low levels of activity?

    If walking was the most commonly chosen activity (I think it's been reported that it was), surely that should lead to significant benefits on the step test?

    Maybe I'm unusually able (for a CFS patient) to manage some sort of exercise, and these patients weren't even able to substitute activities in a way which would let them exercise for fitness while cutting out things which were actually more enjoyable/important? Maybe the therapists were being so cautious while they knew that harms were being assessed as part of PACE, that adherence to their programmes didn't really promote any additional exercise?

    Reference 11 was:

    11. James D. Formula for fitness. University of Gloucestershire: Research Faculty of Sport, Health &
    Social Care 2012.

    So this was a post-hoc analysis... surely they could have come up with some way of claiming a significant improvement! Almost disappointed in them. [Edit - this was when I thought GET did numerically best, based on 12 weeks data - at 52 weeks GET did numerically worst] Also, I can't find this paper, or reference to it, anywhere. It must be this David James: http://insight.glos.ac.uk/academicschools/dse/staff/pages/drdavidjames.aspx

    It looks like this book might include some relevant info, but you cannot read much of it:

    https://books.google.co.uk/books?id=j3x9AwAAQBAJ&pg=PA74&lpg=PA74&dq="David James" "9.81"&source=bl&ots=lUMJH7PDL8&sig=OoNMGnI3HKjfkr6KOWa9L4r9cAc&hl=en&sa=X&ei=zZLRVPuAO4u67gbplICAAQ&ved=0CDcQ6AEwBA#v=onepage&q="9.81"&f=false

    Slightly regret having spent so much time on this and searching through David James' work, but just thought I'd throw it out there in case anyone else can think of something I've missed.
     
    Last edited: Feb 22, 2015
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  2. taniaaust1

    taniaaust1 Senior Member

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    No real improvement does fit with my experience of exercise.

    I did 2 hrs walking with some of that time being jogging per day in the past, I could jog for 40-45 second periods (didnt do anything else to do this exercise!!).

    I did this 2 hrs of exercise often daily thou at times I missed a day. I did this in a way I didnt crash and did it for 6-8 weeks. By the end of that 6-8 weeks, there was no real noticable benefit in my fitness at all. My ability to run had approved by 1 second a week so unless one counts that. Two hours exercise per day for a week for 1 second of improvement!

    Needless to say I was severely disappointed. I'd been watching The biggest looser at the time and had started my exercise program when they started... they were running 10kms by the end of this time, and I still couldnt run for 1 min period!!

    I didnt notice any extra leg strength or ability to do anything easier at all after this 6-8 weeks exercise. (my leg muscles "may" of looked a little less flabby but I dont care about how those look).

    From my experience I can say exercise doesnt help and it just wasted soo much time I could of spend doing things which I would of benefited in my life from doing eg cooking a decent meal. It showed me even more that there is something going very very wrong in my body.
    ..........

    If you can exercise and increase this weekly, it probably means you could do a little bit more in your daily life and maybe you would of had the same result?? (in my case Im already doing things to my max but it still surprised me this didnt help thou I was doing it very carefully so I didnt crash or have it negatively impact me at time other then not able to do lots of things in my life to do it).
     
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  3. daisybell

    daisybell Senior Member

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    This just seems to prove that the deconditioning theory is false, as we know. If in fact we are operating at or beyond our aerobic thresholds much of the time, then any activity isn't going to improve a system which is incapable of recovery/shift in function.

    I know from how I feel that when I have had good periods, I can surprise myself with my ability to walk. That can disappear overnight though, proving to me that although I am far less fit than I used to be, that is not actually the issue now. My ability to generate energy is severely awry, and exercise ain't goin to fix it!
     
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  4. Dolphin

    Dolphin Senior Member

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    Chalder fitness 12, 24 and 52 weeks.png
    Untitled.jpg

    Here is the graph for fitness at 12 weeks, 24 weeks and 52 weeks. By 52 weeks, the CBT and GET groups are numerically the lowest (i.e. have worst results).
     
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  5. Esther12

    Esther12 Senior Member

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    Thank you - I was looking for that in the appendix, and then got distracted looking for the David James paper. I might edit that in to my first post. Also... now less surprised that they didn't try to find a way of claiming small differences were significant.
     
    Last edited: Feb 3, 2015
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  6. A.B.

    A.B. Senior Member

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    It suggests the poor fitness has nothing to do with lack of exercise. Something is preventing patients from achieving normal physical functioning.
     
    Last edited: Feb 4, 2015
  7. Valentijn

    Valentijn Senior Member

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    I think two factors were possibly at play in the different subgroups of CFS patients in the study.

    1) ME patients with PEM generally aren't capable of building up additional muscle function and/or stamina. This is especially true in aerobic exercise situations, such as walking. While we are deconditioned, we really aren't capable of become less deconditioned - and the disability caused by ME grossly overshadows any effects caused by the resulting deconditioning.

    2) Non-ME patients generally weren't deconditioned at all to start with. As such, graded exercise would be so ridiculously minimal in its effects that it wouldn't even serve as a stamina-building method for non-disabled and conditioned people.

    This would be in agreement with the earliest implementation of GET in CFS patients a couple decades ago, where it was declared that it was for over-coming fears, and was so mild it was incapable of having an actual physiological effect. So perhaps they are now coming in full-circle - they again declare there is only psychological impact from GET, and they are oddly silent on the subject of objective markers of disability failing to improve in the ME patients.
     
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  8. Esther12

    Esther12 Senior Member

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    Surely poor fitness will have something to do with exercise levels, even when there's an important problem preventing normal physical functioning.

    They still needed to start with an SF36 PF of 65 of under.

    I'd like to find some equivalent fitness data for other groups, to see how the fitness of those in PACE compares.
     
    Last edited: Feb 5, 2015
  9. Esther12

    Esther12 Senior Member

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    The results from PACE really make it clear how patients will report being satisfied with worthless treatments if they've spent a few hours with someone who acts caring:

    Satisfied with treatment: APT+SMC: 128 (85%) CBT+SMC: 117 (82%) GET+SMC: 126 (88%) SMC: 76 (50%)

    This is how so many people are able to build careers from quackery.
     
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  10. JohntheJack

    JohntheJack Senior Member

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    These figures are very interesting. I agree with the point that GET is in effect just another form of psychological therapy. In practice it becomes much less than meets the eye: it's just a form of maximised pacing. You get your own personal trainer who tries to help you do a little more than you thought possible. It is in fact 'teaching to the test'. Get a whole load of chronically sick patients and give some of them a coach to help them find their limit, as defined by how much they can walk, and you find a few can walk a small amount further than they had previously thought they could. So what?

    The problems are: First, the exaggerated claims made for this marginal improvement and its interpretation as evidence of the psychological nature of the illness. Second, the notion that exercise has made the difference and can be seen as treatment.

    As for the fitness measurements, they all look so close that the differences are probably not significant. Which is of course significant, because they show there is no treatment. (And of course we can have some fun with them: CBT-GET, the treatments which leave you worse off.)
     
  11. Esther12

    Esther12 Senior Member

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    I agree that the biggest problem is the way the benefits of GET are exaggerated, but

    That's partly as a result of them making 'pacing' more like GET though, with more of an emphasis on medical authorities telling patients how to behave. APT seems to have loads of the bad things of CBT and GET, but without encouraging the sense of control and responsibility that the positive claims about CBT and GET would be expected to lead to. The fact that 85% of patients rated themselves as satisfied with APT just show how low people's standards are for CFS 'treatments' (or else, how little value there is in asking people to complete these questionnaires).
     
    Last edited: Feb 22, 2015
  12. JohntheJack

    JohntheJack Senior Member

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    Maybe. I think a lot of these 'treatments' are in the eye of the beholder. Some GET will consist of nothing more than trying to help people find something they can do regularly, while others will see it as 'exercise treats ME' and try to get the patients to do more than they safely can.

    I think that's why in closely monitored trials there isn't much in the way of harms recorded whereas plenty of patients have been made ill by doing too much.

    I agree on both about patients' expectations and meaninglessness of questionnaires.
     
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  13. Dolphin

    Dolphin Senior Member

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    (In case anyone missed it)
    The journalist, David Tuller DrPH, has today posted a substantial piece on the PACE Trial:

    TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study
    http://www.virology.ws/2015/10/21/trial-by-error-i/

    There's an introduction and summary at the start if you don't want to take on the whole thing.

    It's being discussed in this PR thread:
    http://forums.phoenixrising.me/inde...he-pace-chronic-fatigue-syndrome-study.40664/

    ME Network have also posted their own summary piece:
    http://www.meaction.net/2015/10/21/david-tuller-tears-apart-pace-trial/
     
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