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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. Simon

    Simon

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    An interesting exploration of why GET etc do badly in patient surveys compared with clinical trials.

    Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME [Disabil Rehabil. 2013]

    Abstract

    Purpose:
    First, to explore the experiences of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) of rehabilitation therapies so as to build an understanding of reasons for the discrepancy between the notably mixed experiences regarding effectiveness reported in patient surveys and the RCT evidence about the efficacy of Graded Exercise Therapy (GET). GET is a form of structured and supervised activity management that aims for gradual but progressive increases in physical activity.

    Second, to review patient experiences of two related rehabilitation approaches, Exercise on Prescription (EoP) and Graded Activity Therapy (GAT).

    Method:
    An online survey conducted by the charity Action for ME generated qualitative data about 76 patient experiences of rehabilitation undertaken during or after 2008, examined using thematic analysis.

    Results:
    Both positive and negative experiences of rehabilitation were reported. Positive themes included supportive communication, the benefits of a routine linked with baseline setting and pacing, the value of goal setting, and increasing confidence associated with exercise. Negative themes included poor communication, feeling pushed to exercise beyond a sustainable level, having no setback plan, and patients feeling blamed for rehabilitation not working.

    Conclusions:
    The negative themes may help explain the negative outcomes from rehabilitation reported by previous patient surveys. The negative themes indicate rehabilitation processes which contradict the NICE (National Institute for Health and Clinical Excellence) Guideline advice regarding GET, indicating that some clinical encounters were not implementing these.

    These findings suggest areas for improving therapist training, and for developing quality criteria for rehabilitation in CFS/ME.

    Implications for Rehabilitation
    The insensitive delivery of rehabilitation support for people with CFS/ME can explain negative outcomes reported in patient surveys. Therapist-patient collaboration, establishing a sustainable baseline and agreeing a setback plan are all examples of higher quality rehabilitation indicated by this research.

    Greater awareness of the positive and negative experiences of rehabilitation therapies should enable avoidance of the potential pitfalls identified in this research. Positive experiences of rehabilitation therapies include supportive communication with a therapist, treatment which included routines and goals, and value attached to baselines and controlled pacing.

    By contrast, factors leading to negative experiences include poor communication and support, conflict in beliefs about CFS/ME and rehabilitation, pressure to comply with treatment, worsening of symptoms, baselines experienced as unsustainable, and feeling blamed for rehabilitation not working.
  2. biophile

    biophile Places I'd rather be.

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    Interesting, even if the diagnosis of ME or CFS was not verified. It makes sense that "insensitive delivery of rehabilitation" would help to explain the negative experiences of GET, but I am concerned that this still promotes the optimistic view that the only thing wrong about the theory speculative hypothesis and practice of GET is when it is applied too forcefully.

    I would go further and state that since there is no convincing evidence that GET can actually sustain increases in patients' total activity levels and reduce symptoms at the same time, perhaps the key to its "success" is, ironically, not achieving its end goals of increased activity levels. Isn't it then deceptive to call it rehabilitation and GET if there is no rehabilitative increases in activity? Even if there are other components of "GET" which can help some patients with broadly defined CFS, how long will this descriptive charade and false expectation continue?

    Furthermore, no GET study has ever selected patients based on strict criteria which emphasizes the all important post-exertional symptomatology, such as that described by the ICC for example, not the watered down versions. Many patients have found that the rationale of GET simply does not reflect the nature or reality of their illness, and sustained increases in activity are impossible. Some even find it insulting because of the inaccurate assumptions and arrogant expectations involved. It is therefore reasonable to suspect that differences in illness characteristics between patients can also help to explain the negative reports of GET.
    meandthecat, Dolphin, MeSci and 11 others like this.
  3. Bob

    Bob

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    Thanks biophile, for that excellent post, which I totally agree with.

    It seems to me that GET is being developed to be more and more like pacing, where there is a sensitive focus on the patient's safe limits and ability, and to set adaptive goals according to safe limits. So the term 'GET' is becoming more and more misleading, as GET is quietly transformed into pacing.

    A problem with this study, as far as I have insight into it, is that their interpretation of patient feedback seems to be superficial.

    For example, looking at the following listed bad experiences: conflict in beliefs about CFS/ME and rehabilitation, worsening of symptoms, and feeling blamed for rehabilitation not working... To me, this suggests that GET is simply inappropriate.

    And looking at the following positive experiences: treatment which included routines and goals, and value attached to baselines and controlled pacing... suggest that pacing, and help with setting goals, is more valued and appropriate than graded exercise.
    WillowJ, Dolphin, allyb and 6 others like this.
  4. Firestormm

    Firestormm Guest

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    It's like I always said GET should equal Graded Activity Therapy aka Pacing, Bob. Our specialist lead is Carol Wilson. Look her up. That's her philosophy, and the practice of her and the team down here is sunny Cornishland - as I have learned since coming to this fabulous county. It's always been her approach and is certainly reflected by the views and application of my own home-visiting therapist who is part of Carol's team. And t'was Carol who helped pen the Guideline. Although - as she told me once - not all of the published language was as she would have liked... Will have a proper read of the survey later. Knackered and off to rest. TTFN :)
    warriorseekspeace likes this.
  5. Sean

    Sean Senior Member

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    That is my take on it. It is their face saving way out.
  6. Valentijn

    Valentijn Activity Level: 3

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    It's a bit funny seeing how GET evolved. Initially it was intended as more of a complimentary cognitive treatment, based on the theory that it would help us realize there's nothing wrong with us and exercise isn't actually harmful. Even the BPS crowd were saying the physiological effect of GET was negligible.

    And when that was getting the same results as CBT in studies, instead of evaluating whether either treatment was actually helpful at all, they decided GET must be as helpful as CBT was presumed to be. This gave them a nice way to tie in OI (since it's undeniable that it exists) to the BPS model by declaring it was a result of behavioral changes.

    And now they're moving toward a form of GET which is almost identical to pacing - something we've already known for decades is the most effective "behavioral" treatment :p

    Congratulations, BPSers ... twenty-five years of churning out papers and you're back where you started, and without having learned a blessed thing. :thumbsup:
    taniaaust1, SOC and Bob like this.
  7. alex3619

    alex3619 Senior Member

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    The history of ME is in part a history of patients being right, and doctors wrong. Doctors jumped to conclusions. Of course we are not always right, neither as individuals or a group, but:

    We complained we got worse after activity. Doctors who favoured CFS said fatigue (though ME docs were not fooled). Now we know post exercise cytokine studies and repeat VO2max testing we were right all along.

    We have said pacing is better than GET. Are they conceding we were right all along?

    We have said we felt like we had a viral infection. That was dismissed as crazy talk. Yet with modern understanding of both herpes family and enteroviral family viruses, we now know we were right all along.

    Who is delusional? Us or doctors who don't listen to their patients?

    If its not us who have the false illness beliefs, then who should be in therapy? ;)
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  8. A.B.

    A.B. Senior Member

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    I'm interested in how many of these patients reported gains with GET.
    Bob likes this.
  9. Purple

    Purple Bundle of purpliness

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    Only 76 patients? Surely with an online survey, more responses could be collected. (Though that would presumably increase the cost of analysing the data.)
  10. Bob

    Bob

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    Good point.

    And we know the answer to that from the PACE trial: GET benefits no more than 15% of CFS patients.

    But that's inconveniently too simple a statistic for them to repeat anywhere!
  11. Esther12

    Esther12 Senior Member

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    If the deconditioning model of CFS is bullshit, then promoting it will harm patients. We can point out that this will occur through different mechanisms: "feeling pushed to exercise beyond a sustainable level, having no setback plan, and patients feeling blamed for rehabilitation not working", etc/whatever. None of that should distract from the primary problem: treating patients as if deconditioning is a key perpetuating factor in CFS when this is not the case is quackery.

    In addition there are all the problems which stem from the lack of informed consent, and the dishonest claims about efficacy. The more I read about GET and it's justifications, the more angry I get about the way it was sold to me and the fact that I wasted so much time and effort on it.

    Also, these 'positives' for rehabilitative approaches sound pretty worthless to me (at least for what I want).

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  12. biophile

    biophile Places I'd rather be.

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    Good point. GET is becoming more similar to pacing. The PACE Trial even describes CBT and GET as versions of pacing. IIRC, the earlier papers and guidelines on GET were not exactly "push exercise at all costs" either, there is at least some minimal advice to approach it somewhat gradually (I would however be very interested in links to cruder versions of GET). Now there is even more regard being given to symptoms and limitations than before, but the failure of GET to increase total activity levels is still being swept under the carpet with spin and hype.

    I would not be surprised if in several years, common "GET" is basically just pacing with slightly more emphasis on tolerating temporary symptom exacerbations and testing the waters. Except these were never entirely prohibited or discouraged in pacing in the first place, this is a false distinction perpetuated by GET proponents who present their therapy as a reasonable self-efficacious tolerance of symptoms with a time-contingent approach vs pacing as naughtily giving in to otherwise modifiable symptoms in a symptom-contingent approach. Modern GET is not purely a "time-contingent" approach anyway. PACE GET encouraged a tolerance to supposedly-temporary symptoms while adjust to the new exercise level, but discouraged any worsening of symptoms which affected daily functioning.

    I think GET proponents must bear some responsibility for the inappropriate application of GET too. They cannot be blamed for enthusiastic health care professionals not following their instructions properly, but they are certainly responsible for promoting dangerous myths that the ongoing symptoms and disability in CFS are largely due to deconditioning, psychological hypersensitivity to ordinary sensations, symptom-focusing, and "faulty" (correct) beliefs about exercise.

    It is interesting that your real world experience of GET is basically pacing instead of strict GET, but it would be unfair if pacing was slowly being re-labelled/re-packaged under the GET banner, especially if it is done so that GET proponents can save face after decades of being wrong and essentially opposed to pacing. People naturally refine their models over time, but failing to admit previous errors and even gutting the rival approach and calling it their own without credits is unethical.

    Yes, good point. Patients were right all along about the adverse effects of exercise, the activity ceiling, the benefits of falling back on pacing as a default (which even CBT/GET does now), the descriptions of symptoms as we experience them, the importance of case definitions, the probable physiological nature of symptoms, etc. Patients may have no special insight into what exactly is causing their illness, but they have deep insight into the characteristics of it, characteristics which were generally ignored in favour of whimsical ideologies. Haha yes! "Who is delusional? Us or doctors who don't listen to their patients? If its not us who have the false illness beliefs, then who should be in therapy?"

    Like Esther12 above I was also stung with the GET paradigm. Now I simply refuse to sacrifice what limited function I have left to engage in meaningless exercise again based on just another fad in a long history of fads in psychological medicine. It makes my skin crawl when thinking about how every time patients meet a new doctor they have to get past the probability that they are going to be condescendingly, dismissively, and ignorantly lectured about structured increases in activity levels as if the hundreds of previous failures to do so in the past somehow doesn't count.
    Cheshire, Dolphin, MeSci and 4 others like this.
  13. Snow Leopard

    Snow Leopard Senior Member

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    Well the more GET is like pacing the better. Cognitive treatments in general can lead to improvements in quality of life (though patients won't necessarily have higher functioning), but the key is not to claim that they are going to lead to any sort of significant recovery. As long as they claim recovery is possible/likely, it will continue to be a point of division.
    mango, Dolphin, Simon and 2 others like this.
  14. Valentijn

    Valentijn Activity Level: 3

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    biophile

    In 1991 references to it were very basic and crude, also based on the psychological benefits, not physiological:
    That study describes itself as a "pilot" study, and uses the basic CBT approach with GET tacked on. Regarding GET it says:
    I think they cite to the wrong source for a more in-depth explanation of their methods, since they source is pretty irrelevant to treatment. It seems more likely the meant to cite to the preceeding source, which was "Wessely S, Butler S, Chalder S, David A. (1991). The Cognitive Behavioural Management of the Post-viral Fatigue Syndrome. In; "The Post-viral Fatigue Syndrome (M.E.)". (eds. Jenkins & Mowbray). Chichester, John Wiley, 305-334.". It's not available without paying for the book.

    By 1997 they're a bit more refined, and advocating getting to a maintainable baseline before pushing their limits:
    Still ignoring symptoms in 2001:
    It's definitely achieved a place of prominence in 2002:
    And it's still a problem with "sensitization" in 2003:
    Oh, and here's some boom-and-bust attribution from 2009 (ie, you're either doing too much or too little, but it's definitely your fault for doing the wrong thing):
    And in 2012 the strongest argument in favor of GET seems to be that the BPS school is pro-choice:
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  15. Firestormm

    Firestormm Guest

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    Am gonna have a better read through the comments on this thread later when I've properly woken up a bit; but if my experience can count for anything it is that - based on the individual (both patient and therapist) - the perhaps more concerning aspect of GET - the 'graded' bit; is used as a general term.

    Ignoring the word 'exercise' for a moment and all that that might imply; 'grading' your activity means basing the activity and the frequency of it on your ability at any particular moment. It isn't about forcing yourself to 'do more' and more and more in the expectation that within X amount of time you will be back to work with the illness behind you.

    If anything, and again this could easily be personal of course, this whole process of 'graded activity' (not that it is 'sold' as a specific programme or can be identified as such in my visits), has been a learning experience - I am the one learning how to manage my own expectations and my therapist is learning about how this disease affects me. This 'activity management' was a similar approach from 'rehabilitation specialists' as I saw being applied to people with MS when I was based in that independent clinic the other year.

    OK it isn't for everyone and not for all of the time. Some people might find they don't need the support. But it is something you can adapt - plan for - at any stage of health; other than being wholly incapacitated of course. For me though having someone with me and being able to talk to about the challenges and effort and failures and frustrations etc. is a boon; and yeah it's encouraging and reassuring. Of course I still ****-**! I still try and do too much - but I never fail to try and if illness prevents me from doing stuff - I am learning to handle that frustration (now THAT is a learning experience for me!).

    I think the message became pretty clear to many professionals on the ground - if it was indeed necessary - that as a patient group we can't be accused of swinging the lead; not when they get to know us and are of course willing and flexible enough to alter any preconceptions. I wasn't exactly brimming with confidence when I agreed to engage with this aspect of the ME Service. After reading everything I had for several years about others' experiences I think I would be forgiven for taking a pass. But then the same could be said about seeing a GP.

    PACE was for crap. I thought it hoped to achieve far more than it was ever likely to and this proved to be the case. Waste of bloody money - but then as a patient my priorities are somewhat different when it comes to spending such a massive amount of public money on research. I don't agree with or appreciate some/a lot of the language that is used in a lot of the papers that get published surrounding all of this 'exercise' notion. Then I'm a patient and I want better answers and most of the time I'm pissed off!

    Good morning :)
  16. Sean

    Sean Senior Member

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    Quoted in Valentijn's post



    That there, folks, is straight rhetorical fluff. Pure marketing spin. Empty motherhood statements. Lots of nice words and concepts and sentiments, in order to sound knowledgeable and compassionate and concerned, but saying and offering patients absolutely nothing at all.

    Meh.
    Esther12, peggy-sue and Valentijn like this.
  17. user9876

    user9876 Senior Member

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    I think the proponents can be blaimed in that they often fail to give a good set of instructions yet they encourage a therapy to be rolled out by many doctors. I skimmed through the PACE manual and thought that it would be quite hard to reproduce and quite a lot is subjective. I know in the IT industry they have put a huge amount of effort into how to roll out soft consultancy services in a reproducable and reliable manner. It seems striking that with CBT or GET there seems to be no thought applied to this problem.

    If allowing them to save face, allows them to shut up and move on so that we can have some proper biomedical research maybe it is worth it? They could even be challenged as causes are better known and understood. I suspect, however, they have problems in moving on since there are much less medically unexplained things for them to interfere with. Perhaps this is behind attempts in DSM 5 to widen the scope of psyciatric medicine.
  18. Dolphin

    Dolphin Senior Member

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    From Action for ME. Not a recommendation - I remain uneasy about this. I'm waiting to read the full paper before thinking about it more.

    http://www.actionforme.org.uk/get-informed/news/our-news/our-survey-physical-rehab-for-me-cfs


    Valentijn likes this.
  19. Bob

    Bob

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    Thanks Dolphin. I don't know why they are pissing around spending precious research money on this sort of project. Perhaps it would be more helpful if they just disseminated the actual results of the PACE Trial, for their members. I don't know if AfME have any insight into the results of the PACE trial, as they've certainly never published them or helped their members understand them. I don't know why they haven't clearly published the results in their member magazine. They are doing their members a disservice if they don't tell them that GET will not meaningfully improve disability. And that GET will not help people get back to work, or to get off benefits. And that only 15% of patients report experiencing any benefit from treatment with GET. Why haven't they told their patients this?!? Grrrrr.... rant over.
    Dolphin, Purple and Valentijn like this.
  20. Firestormm

    Firestormm Guest

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    Bob ME Research UK had this to say on Saturday:
    Plenty more comments on their FB page...
    Bob likes this.

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