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Investigating the origins of GET (graded exercise therapy)

Discussion in 'PsychoSocial ME/CFS Research' started by Lucibee, Aug 21, 2018.

  1. Lucibee

    Lucibee Senior Member (Voting Rights)

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    While reading the Ciba Foundation Symposium 173 papers (Wiley, 1993), I came across this quote from Peter White in one of the discussions (after Sharpe's presentation on Non-pharmacological treatments - p310):

    And thus, CBT/GET was born!

    However, I looked back at David McCluskey's presentation, and there wasn't any mention of a graded exercise therapy, as he was presenting on pharamacological treatments. So I wondered if he had mentioned something at a previous symposium - and sure enough, he had.

    This is from the British Medical Bulletin special issue on post-viral fatigue syndrome (McBride & McCluskey, April 1991):
    But it's clear he was referring to previous work by Wessley.

    McCluskey's other study (reference 1 in the above quote) looked at exercise capacity in patients with CFS and IBS vs normal controls and found a reduced aerobic work capacity in CFS patients compared with the other two groups. This paper is also cited in the PACE GET manuals.

    McCluskey comments that patients seem to overestimate their previous exercise capability before becoming ill.

    I then looked to see what White had done with this info. In 1997, he published his own trial of GET (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2126868/), which seems much more careful than the PACE version. Pts had to monitor their heart rate and make sure that they didn't go above 50% of max, and exercise intensity was modified accordingly.

    In another paper in Physiotherapy (May 1998), this section caught my eye [my emphasis in itals]:
    "The key to success is adherence to a structured and monitored programme, whereby they
    do not overdo or exceed their exercise prescription, even on good days, but where they also
    continue to exercise, albeit at a reduced level, on the bad days."

    The 1997 trial doesn't mention reducing the level on bad days (but I suspect that's what happened). This is the relevant section:
    It seems striking to me that the GET eventually adopted in PACE seems particularly harsh and careless in the light of these earlier studies.

    To me, it seems that the original intention of any exercise therapy was to manage the ill-effects of deconditioning that could potentially exacerbate symptoms of pain and fatigue, rather than trying to combat the underlying condition itself. Does that seem a fair assessment?
     
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  2. strategist

    strategist Senior Member (Voting Rights)

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    Read the older papers by Wessely. That's where the idea comes from and I don't think the intent was as reasonable as you are proposing here.
     
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  3. chrisb

    chrisb Senior Member (Voting Rights)

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    The Wessely, Hotopf, Sharpe interpretation of the Fulcher, White study was;

    "A key finding of the Fulcher and White study is that objective measures of physical fitness were not associated with outcome (i.e. clinical improvement was not related to improving physical fitness). Instead we suspect that the benefits were linked to confidence, predictability, and overcoming avoidance, lending support to our view that disability is more related to behavioural avoidance and confidence than simple physical fitness."

    Not able to comment further at present.
     
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  4. Lucibee

    Lucibee Senior Member (Voting Rights)

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    The whole notion that the condition is "perpetuated by deconditioning" makes no sense if you then have to tell patients not to overdo it on their good days!
     
  5. Lucibee

    Lucibee Senior Member (Voting Rights)

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    As far as I can tell, Wessely's older papers are entirely theoretical. He cites no practical evidence to back it up. This is what he says in the 1989 JRCGP article:
    It's back-of-envelope stuff!
     
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  6. Lucibee

    Lucibee Senior Member (Voting Rights)

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    In contrast to Wessely's approach, Dr Ho-Yen (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1371214/) says the following (in 1990):

    Approaches to treatment
    It has been suggested that a new approach to the treatment of patients with post-viral fatigue syndrome would be the adoption
    of a cognitive behavioural model.[3] However, many stages of this model appear to be based on patients who have been
    ill for more than five years rather than those who have been ill for between three months and two years (Table 2). Those who
    are chronically ill have recognized the folly of the approach which is taken by the recently ill and, far from being maladaptive,
    their behaviour shows that they have insight into their illness. The model, which has been claimed as a new approach[3] is no
    more than the conventional view - patients have been told for decades to 'get out and exercise' or 'go back to work. Indeed,
    the truly new approach is that of moderating activity. This approach is based on patients' experiences that of all treatments,
    rest is by far the most helpful.[9]
     
    Last edited: Aug 22, 2018
  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    Plus ca change ...
     
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  8. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Lucibee,

    There is an Australian maybe Physiotherapist ? who comes comes out of the woodwork every now and then and claims to have an early model of treating ME or CFS with exercise.

    As an idea, I wonder how much Dr Lloyd may have had with propagating his work and given that Lloyd was at some of these meetings and in contact with some of the main players I wonder if it came from there?

    Just an idea. I'm having a look to see what I can find.
     
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  9. Lucibee

    Lucibee Senior Member (Voting Rights)

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    @ukxmrv - I noticed that Lloyd was cited in some of the early papers. This one is cited in Wessely 1989 [ref 18 in the extract below]: Lloyd, Hales, Gandevia 1988 - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1032921/

    Following on from the previous quote:
    "In general such advice is counter-productive, and must be set against the following:
    - the harmful effect of disuse and inactivity on muscle function, in addition to respiratory and cardiovascular performance;[14]
    - the psychological benefits of exercise on emotional disorders;[15]
    - the adverse psychological effects of lack of exercise;[16]
    - the deleterious psychological effects of avoidance of feared situations, as in agoraphobia;[17]
    - recent evidence [from my mate in Australia] that dynamic muscle function is normal in patients with chronic fatigue syndrome, muscles being neither weak nor fatiguable.[18]"

    I thought the issue was more with central fatigue rather than muscle fatigue per se. Not sure whether these types of study are going to assess that?
     
    Last edited: Aug 22, 2018
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  10. dave30th

    dave30th Senior Member (Voting Rights)

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    @Lucibee this is very interesting, thanks for pulling the timeline together. Andrew Lloyd in Australia also did a 1993 study that showed no benefits for CBT. Later, of course, he changed his mind on that one.
     
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  11. WillowJ

    WillowJ Senior Member (Voting Rights)

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    This one?




     
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  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Yes. Him. Another one with a magic cure only he knows, but he won't share the answers unless he gets paid. *rolls eyes*
     
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  13. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    The problem is that if you limit the exertion to 50-60% of max heart rate, you aren't going to build any fitness. This type of therapy is purely psychological.

    The same goes with the fad of high step counts - it is intensity, not step counts that builds fitness or strength. Higher activity might lead to weight loss, but we're talking about an average of 15,000 steps per day to have significant weight loss versus the more effective approach of changing one's diet.
     
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  14. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Oh he invented graded excercise, until people told him that was bad. Then he had invented pacing. It’s all in how you look at it.

    ETA: actually I feel a little bad for him. His account of the beginning is that a university asked him to write a thing, and, iirc, without any clinical trials experience, training, or assistance he conducted an experiment and wrote it up. It wasn’t what the university wanted, but rather than explain, teach, or help, they evidently told him to buzz off.

    He seems to be a little stuck, but that’s a normal human thing.
     
    Last edited: Aug 22, 2018
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  15. Inara

    Inara Senior Member (Voting Rights)

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    This is correct wrt. resistance training (you need to train around 70-80% of max. strength in order to increase muscle mass), but a GA1 training (~ 75% max. heartrate), for instance, is an aerobical training for improving endurance, so it's not about intensity alone, and GA1 is a very important part of an endurance training.

    50-60% would be a recovery training and therefore it's not supposed to increase strength/endurance/capacity. An exception is if you start with a training. Any training for the first 6-8 weeks will show improvement; this is about building "neurogenic structures" for a better "communication" between brain and muscles.

    Whenever reading those GET exercise papers and manuals, I really wonder about their "knowledge" about sports medicine.
     
  16. Trish

    Trish Moderator Staff Member

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    Even if they know about sports medicine, they don't know about the differences there may be in ME that might affect that knowledge. I think the Workwell foundation have shown this training model doesn't work for us??
     
  17. Inara

    Inara Senior Member (Voting Rights)

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    The Workwell foundation seems to know their stuff...whenever I read GET things, this seems very different. By the way, who were the professionals who set up the GET plan, and what was their aim? It doesn't seem to be anything I came across during my training phase. But that doesn't have to mean anything.
     
  18. Barry

    Barry Senior Member (Voting Rights)

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    A simple one word response would suffice :).
     
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  19. Barry

    Barry Senior Member (Voting Rights)

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    If it was really aimed at overcoming true deconditioning, then I would agree. If an oblique reference to PwME being deconditioned patients falsely believing they had an illness they could not exercise themselves better from, then I would disagree. And I don't know which it is.
     
  20. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Deconditioning is not common in ME anyway. While all this was going on, none of them actually asked patients if they were deconditioned (or even what their coping styles were). It was assumption after assumption. They said what they assumed to be true about patients, then stated what they assumed would fix it.
     

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