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Positive vs negative outcomes of Exercise rehab in ME/CFS probed via online survey (Pheby 2013)

Discussion in 'Latest ME/CFS Research' started by Simon, Jun 7, 2013.

  1. Esther12

    Esther12 Senior Member

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    Could it have been?:

    We'd be so much better off if Action for ME shut down.
    peggy-sue, Valentijn and ukxmrv like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    I think some people who have a strong compulsion to respect authority run into some major brain malfunctions at times. Instead of accepting that an authority might be wrong, they'll do logical backflips to try to find a way to get reality and the statements by an authority to mesh.
    peggy-sue, Dolphin, Sean and 3 others like this.
  3. alex3619

    alex3619 Senior Member

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    Rationalizing rather than rational. ;)
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  4. biophile

    biophile Places I'd rather be.

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    The positive experiences in the full text are themed around everything except increases in total activity levels. So there is something about GET, except the graded increases in exercise, which helps a small proportion of broadly-defined CFS.

    The negative experiences sound like a natural consequence of taking GET too literally or at face value. Obviously "insensitive delivery of rehabilitation" is undesirable even for GET proponents, but after therapists read through the claims and GET rationale they may aggressively wonder why the patients can't do more or aren't improving as expected.

    Again, the available evidence suggests that GET does not increase total activity levels or employment etc, despite decades of promoting these therapies as reducing disability. Ironically it would seem that the key to successful GET is not making patients increase their total activity levels as the GET rationale expects. Some of the proponents must have realized this at some point, and are now saying that self-reported improvements in CBT/GET are associated with (supposed) changes to perceptions about illness/symptoms/abilities, rather than actual changes in activity levels or fitness levels. However, if these cognitions have changed, why aren't patients doing more? Cue the spin.
    WillowJ, ukxmrv, Dolphin and 5 others like this.
  5. biophile

    biophile Places I'd rather be.

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    Appeals to authority are part of the confidence trick being played out. We are shamed into accepting the evidence-base of CBT/GET lest we be accused of being unscientific extremists who rather patients remain unwell, something which no one wants to be branded when it comes to debating the science of medical issues. Fortunately, not everyone has bought it.
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Psychologists, heal thyselves...:snigger:
  7. Dolphin

    Dolphin Senior Member

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    Bob and Firestormm like this.
  8. Firestormm

    Firestormm Senior Member

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    Also in pdf. Here.
    Bob likes this.
  9. Esther12

    Esther12 Senior Member

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    I think that their conclusion should be: the positives of NHS 'rehabilitation' are so minor, and the negatives such a predictable and common occurrence, that any spending in this area should be provided directly to patients, who can then decide for themselves how to make their lives better.

    Instead we get more of Action for ME's excuses, and pleas to go on giving more money to those who have been responsible for patients being mistreated. How 'positive' and 'constructive' they are, and unlike those militant organisations who want to bring about real change.
    MeSci, Valentijn, biophile and 2 others like this.
  10. Dolphin

    Dolphin Senior Member

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    Graded Exercise or Graded Activity means one should either do the same amount, or increase. If one can do less than previously, the same as previously or more than previously based on how you are, that's much more like pacing.
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  11. Dolphin

    Dolphin Senior Member

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    From the paper:
    GET isn't supposed to be flexible. It's about breaking the association of activity with symptoms.

    Some quotes from Clark & White (2005)

    And
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  12. Firestormm

    Firestormm Senior Member

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    Actually, 'grading' means measuring. Taking a look at what you need to do and then considering how best to achieve it and/or if those goals are really necessary. Thinking about the efforts will be involved etc. Not automatically discounting them and saying 'nope' but trying to find a way of doing them that is least likely to cause any increase in symptoms above and beyond what is bearable/manageable.

    There are various prescriptions for a programme of GET. And one is to try and increase the activity over a period - as a goal. And yeah, some of the practitioners out there are reminiscent of schoolmasters with canes to hand: they have little if any flexibility of appreciation of the patient or of the condition and are remorseless in their dogged pursuit of unrealistic timeframes and like nothing better than to blame the patient: or so we hear.

    However, for others, GET is more akin to activity management - and the 'exercise' is part of that e.g. trying to include a walk that is reasonable, but as part of a routine or with routine as a goal; while retaining flexibility to account for fluctuations in the condition. Clinical practice can be different to PACE Trial manual. There are clinics who 'nod' towards PACE and GET as per the manual - and then try and provide a personalised service - as per NICE - and with the individual at it's heart.

    That said, I have never been lectured on adopting GET per se - our NHS Service adopts what I/they would term Graded Activity Management which is in itself personalised and adaptable to the degree to which the patient is affected by the condition. It is very much a common-sense approach (but then I have been around a while as you know), however, that takes away nothing from it's inherent need to be taught - if only as a means of confirmation and reinforcement that the patient is going about their illness management in the best way possible. Of course we have no 'evidence' that such an approach has any merit - shame really...
  13. Dolphin

    Dolphin Senior Member

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    I don't recall "graded"/"grading" being used in this way in manuals for get or CBT that involves the scheduling of increased activity.
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  14. Firestormm

    Firestormm Senior Member

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    That's the definition of grading/graded as is taught within the CFS/ME Service here in Cornwall, my friend, and not out of any manual that I am aware. Imagine my relief - when I went 'undercover' - one hears such stories and I had misgivings of my own: hence the 'undercover' need. Not that I was really in disguise of course. I just wanted to find out for myself what was what and so undertook a 3 hour a week, across 7 weeks, ME Management Programme in group, run by the Service. Normally Prof. Pinching would have been on the course to provide the 'bio' aspect, but they managed well without him to the extent that they could, and our new neurologist is - I heard yesterday - very very good. We had the ME Association Team down to Liskeard for Question Time and I got to meet several fellow patients. I was desperate to know how she was settling in and what her knowledge and abilities were: and all good from those to whom I spoke - she's even prescribing (or recommending to GPs) medications. It ain't perfik down here: but they do a good job with what they have and what they can offer.
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  15. Dolphin

    Dolphin Senior Member

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    Thanks.
    However, the question is what should or should not be a graded activitiy or graded exercise programme. If one just measures out activity or exercise, that could describe almost any management system.

    Here's what Clark & White (2005) say:
    From the Introduction:

    Therapeutic exercise programmes were first designed for patients with CFS on the basis of reversing physical deconditioning. However, they are also a behavioural graded exposure treatment thought to work by habituating the patient to the stimulus of exercise which has caused the conditioned response of fatigue and malaise.​
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  16. Snow Leopard

    Snow Leopard Senior Member

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    The UK approach is quite different to overseas approaches, for example:

    http://www.ncbi.nlm.nih.gov/pubmed/15115421
    Wallman 2004

    We should not pretend that the GET model pushed by certain UK psychiatrists is the only tested way. Whenever GET with an emphasis on ignoring symptoms is pushed, we need to point out that a pacing based model has been proven to be just as 'effective'.
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  17. Firestormm

    Firestormm Senior Member

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    It is not my - albeit limited - personal experience that there is a 'UK approach'. I think we (I) need to differentiate between what is prescribed in specific Trials and manuals, and what is (or can be) delivered in clinic and on a personalised basis.

    When it comes to clinical delivery, most recently, we were very much encouraged to 'take from it what we felt most useful to us'. That seems to be to be what I might describe (from my more recent University experience), as a 'modular' approach. It seems eminently sensible to me.

    I go back to what I said pre-PACE when it was announced they were embarking on the Trial, and that was that is was enormously ambitious and almost impossible to achieve. You need in a Trial a fixed delivery - such a in a drug Trial where you can measure the drug and the dosage etc. - but with what I would term a therapy approach to illness management: this is inherently difficult especially in regards to measuring outcomes and drawing generalising conclusions.

    We are all different. NICE prescribes personalisation. The 3 standard recommended therapies are known collectively as 'management strategies' and 'management' does not a cure imply. On the other hand - and to get back to Dolphin's question: I think as a patient I will naturally want to do more and I will - as I have in the past consistently - boom and bust. If I can achieve more - with goals or progress or activities that are relevant to me and my own circumstances - on a gradual basis and sustain that for longer: then it seems worth a shot.

    But forcing someone to repeatedly strive for more doing the same exercise - for an illness that is both not understood and fluctuating in nature - is not only perverse but daft. There is encouragement and then there is sense: and in Snowleopord's example above - there is some sense. Though a specific exercise is not the only thing a person does in their day's activities and that needs to be taken into account.

    A Trial might consider itself in isolation - out of necessity: but a patient is an individual. I was saying of the 2-day exercise tests: what consideration is given to the recording of incoming and outcome data to a patients e.g. journey or activity pre-and-post testing? We are not static instruments and neither is our health.

    Sorry. Bit garbled I dare say but I hope you got the gist :)
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Need to be taught? The only useful 'teaching' I have had is from reading about other sufferers' experiences and learning from my own experience.

    If something 'needs to be taught', who learned it in the first place, and how? Or did they just make it up, using guesswork?

    Thank you for posting this quote. It provides a clear illustration of the fundamental error on which CBT/GET is based, and the rationale for the theory.

    That is Pavlovian conditioning. It assumes that there is no real direct causal link between the stimulus/trigger and the consequences, or 'conditioned response'.

    You can read about it here:

    It does not apply to the adverse effects of exertion on ME sufferers, which is a genuine, biological effect.

    Just to confuse matters, the proponents of CBT/GET also claim that we are 'deconditioned', in this case meaning physical deconditioning. Or are they really such rubbish psychs that they get the terms confused themselves? Or really clever psychs trying to distract people from the fact that their theory is based on Pavlovian conditioning by adding a reference to physical deconditioning?
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  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Considering that the treatment is based on incorrect theory, I would favour taking 0% of it. That is what is supposed to happen in science. Evidence disproves the theory, so you dump it and try a different tack.

    Therapy as defined by Cambridge dictionaries:

    Management is about avoiding getting worse, and staying stable. It's not per se a method for making someone get or feel better.
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  20. Dolphin

    Dolphin Senior Member

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    If GET can mean any exercise programme, it becomes meaningless as a specific term I think. Any exercise programme should have measurements in some way so what exercise programme won't be called a GET programme then?

    Similarly people always want to do more eventually, so what wouldn't be called a graded activity programme?

    Peter White would say the Wallman model isn't GET which is about breaking the link between symptoms and activity. Similarly the diagram in the PACE Trial comparing GET vs Pacing.

    In the paper for this thread, it basically says if people simply followed the NICE guidelines and the PACE Trial guidelines for GET, there'd be no problems. If graded exercise can mean anything, it's hard to argue with it. I agree that highlighting the exercise trial you mention is useful (I've highlighted the contrasting approach myself before). By saying it's also GET, it gets confusing I think except to say it was called a GET programme.
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