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Experiences of daily activity in CFS/ME and their implications for rehabilitation programmes.

Discussion in 'Latest ME/CFS Research' started by Firestormm, Jan 1, 2014.

  1. Firestormm

    Firestormm Guest

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  2. A.B.

    A.B. Senior Member

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    The pattern of activity, crash, rest is acknowledged which is good. Unfortunately the message is still wrong, as it insinuates that patients have brought their illness upon themselves with unhealthy behaviour and beliefs. What the author calls pushing activity levels is attempting to resume ordinary, or below ordinary but still increased, activity levels. What causes the crash is not the patients pushing themselves to extraordinary activity levels, but an underlying pathology making it impossible to sustain ordinary activity levels. Also, while activity is clearly a trigger for a crash, the severity of symptoms also clearly fluctuates independently of activity. I note that this is pretty typical for a number of autoimmune illnesses.

    My two cents.
  3. Bob

    Bob

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    The abstract seems slightly muddled to me, and I'm not quite sure exactly what message they are attempting to convey. However I've only got access to the abstract and we need to read the full paper to understand it.

    Perhaps it is useful in parts. For example the following extract provides evidence against the (discredited) hypothesis that fear and deconditioning play a part in the illness:
    "In this small qualitative study, patients expressed negative feelings and beliefs towards the concept of doing nothing and therefore sought to push their activity levels when this was available, leading to recurring cycles of symptoms and activity."

    In the following extract it isn't clear whether they mean pre-illness or pre-relapse (i.e. temporary periods of improved health):
    "The emergent themes described a premorbid state of constant action with difficulty stopping an activity once it had commenced."

    If they mean pre-illness then the extract just seems patronising and quite pointless (it doesn't tell us any thing useful and they seem to be attempting to summarise the pre-illness personality traits of millions of patients in a single sentence.)

    If they are talking about temporary periods of improved health (i.e. pre-relapse) then it's not surprising that patients have a lot of stuff to catch up with when they are feeling relatively improved in health. Apart from this phenomenon apparently being twisted/distorted to suggest a personality disorder, it could otherwise be a useful observation (even if it's stating the obvious), because it again dismisses the (discredited) fear-avoidance-deconditioning model of illness. (The patients are clearly not afraid of engaging in activity nor are they attempting to avoid activity.)
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  4. Bob

    Bob

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    Good points A.B. I think this is a case of me being so used to appalling research that I'm grateful for some crumbs (i.e. research that isn't quite so appalling.) I agree that there is an unhelpful lack of emphasis on the biomedical nature of the illness, and it inappropriately places all blame on the patients, it potentially distorts (or invents) reasons for over-activity, and overall it doesn't seem like the study has much focus or has achieved anything particular useful, and it certainly isn't ground-breaking.

    However, I do think there is a place for honest research that explores the relationship between activity and the severity of symptoms, to help improve the understanding of the illness and how best to manage it, as opposed to any pretence of treating or curing the illness. (Most illnesses require managing.) Such understanding is how pacing came about.

    Post-exertional malaise is widely acknowledged to be a fundamental feature of ME, in which case it's good to understand what part PEM plays in the illness.

    Not everyone with CFS experiences obvious PEM, but it is a major feature of my own illness, and I know that a combination of resting, pre-emptive resting and pacing (including regular mild activity if/when possible and safe to engage in) are the key to improving my own symptoms over time, and for attempting to avoid relapses. (But I know this isn't the case for every one and that many patients don't improve or respond to rest or pacing. And I know that symptoms and illness include a random element, or unpredictable environmental triggers. And I agree that the research emphasis should be on the biology of the disease and not simply re-stating the obvious.)

    I'm not sure if this paper adds any thing useful to the field but I'd need to read the full paper to judge it.
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think I sense a possible sub-text of the authors gently criticising the proponents of GET but being very careful not to state it explicitly, either because frank criticism of such a widely-used treatment would be rejected by journals or because they don't want to antagonise a certain knight of the realm and his cronies for reasons of professional diplomacy and/or other reasons.

    For example they say:

    They are not saying outright that the concept of rehabilitating people without biologically-based disease-modifying treatment is absurd, but they may be thinking and implying it.

    They seem to be saying to proponents of (CBT)/GET that they should NOT assume that patients are deconditioned, inactive and misguided in their 'illness beliefs', and perhaps that they should take into account what patients tell them, AND that GET could cause them harm.
  6. Bob

    Bob

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    @MeSci, yes, that's an interesting observation. Perhaps that's where they are coming from, and why the abstract seems rather muddled to me. The cognitive-behavioural model is so deeply ingrained in the UK (CBT and GET are prescribed by the NHS) that it's necessary to sometimes engage with the the bio-psycho-social proponents on their own terms in order to challenge it.

    I don't think I'm familiar with these authors, and I can't see any other research by them on PubMed, so I don't know what their background is.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I clicked on the first name in PubMed and got all these studies.

    I got this lot for the second author. Yikes - it includes the PACE study! Is the author distancing him/herself from it, and/or has s/he been reading the criticisms and taking them on board? Or...?
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  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Just found this other ME/CFS study including Sue Pemberton (whose name I recall from elsewhere), and she is listed as clinical lead of Leeds & West Yorkshire services, which have been widely condemned by patients.

    Cox is Diane L. Cox who co-authored a 2000 paper with Leslie Findley :( and there is a short version of the paper here (third paper down). Also a 1994 paper with Findley called "Chronic fatigue syndrome in adolescence" which I can't find, and a 1993 one with Findley simply called "Chronic fatigue syndrome".

    (The papers are listed in the huge ME Research UK database - a very useful resource.)

    Just hope that they have both seen the light..
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  9. Bob

    Bob

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  10. Bob

    Bob

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    Not very likely, IMO, but any small progress is welcome! I think the full paper is necessary to understand their interpretation of their study.
  11. ukxmrv

    ukxmrv Senior Member

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    Sue Pemberton was active on the original NICE guidelines with the section on exercise. pacing etc. This I didn't find useful at all.
  12. biophile

    biophile Places I'd rather be.

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    At first I had MeSci's interpretation, but on another reading, I ended up with one of Bob's interpretation. The authors appear to be blaming CFS boom-bust cycles on patients continuing their (retrospective) premorbid behaviours when ill. The abstract itself appears to be a little ambiguous in what is being recommended or how it is being framed.

    Objective evidence suggests that so-called activity modification or "rehabilitation" programs are not actually rehabilitating patients. At best, some patients may be re-organizing their lives, but not increasing total activity levels, due to therapy. So I take issue with the notion of rehabilitative therapies, when they are not actually rehabilitating patients.

    Diane Cox also worked on the PACE Trial APT manuals, which attempt to stop boom-bust cycles. The authors of this paper write that "patients expressed negative feelings and beliefs towards the concept of doing nothing", but how many healthy people do not have negative feelings and beliefs towards doing nothing? Where is the control group?

    Perhaps patients can also have difficulties stopping because starting required the mobilization of a lot of resources and the brain/body is geared up to move (but cannot sustain it without consequences). Autonomic dysfunction, possibly caused by chronic immune dysfunction or oxidative stress, may promote agitation and hinder normal stopping procedure.

    The boom-bust cycle is a commonly accepted characteristic of CFS, one which I experience personally, but have struggled to find objective evidence for it in the research. I think it occurs, but is also overstated and distorted or misunderstood by those who wish to portray CFS as a behavioural problem that can be fixed by spacing out activities.

    At face value, it sounds reasonable to arm-chair propose that patients spread out their activity more evenly, but achieving a Goldilocks-like balance is often impractical and elusive in real life. For many patients, going to the store for groceries or even merely checking the letter box is the so-called "boom" part of the cycle. Some tasks require completion regardless, you cannot just immediately stop grocery shopping half-way into it and pause until next week.

    I am not a perfect robot, sometimes I just overdo it and pay later because I wanted to achieve something, and needed to throw myself into it and let it take over my available capacity, especially if it requires learning and pushing through symptoms.

    It is not a behavioural deviance which usually makes patients boom and bust (out of incompetence or impulse), but the harsh realities of the illness. We try to do our essential activities during times when symptoms are less, and pay the unavoidable consequences later. A.B. beat me to it, and probably explained it a little better too:

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  13. katcoff

    katcoff

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    This sounds like gobbledygook. I think we all know that there is a correlation between exercise and the symptoms, but I try to exercise to keep in reasonably good shape. That way the symptoms stay relatively constant.
    I usually do about 20 minutes of body-weight exercises per day, plus either a half hour of running or jumping rope on alternate days, followed by a half-hour swim, for a total of roughly one hour and 20 minutes per day. I'll do a little less one day a week. I usually have one really bad day every week with an excruciating headache, followed the next day by a dramatic reduction in symptoms, and the cycle starts over.
    I can feel the bad day coming because the previous day I have a lot of pressure in my head, fatigue, and cardiac arrythmias. I've been sick about 42 years with some gradual improvement to the point that I can function at my job fairly well despite feeling lousy.
    I think the vagus nerve theory is correct, based on my own research and symptoms - that's my two cents.
  14. Bob

    Bob

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    And I think I might now agree with A.B's interpretation more than my own. :confused:
  15. Firestormm

    Firestormm Guest

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    Wasn't she also active in that Talkhealth forum that @Valentijn wrote an article about? I think it was her anyway.
  16. Firestormm

    Firestormm Guest

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    I need to also read the full paper. I suspect though that rehabilitation applies also in the sense of rehabilitating patients to their condition i.e. restructuring their lives and the way in which they approach their lives. You could therefore argue that pacing was a form of rehabilitation. Indeed, if you think about it, the olde convalescent homes - which I often regret we no longer have - used to try and prepare a patient for a life with a long term condition or disability: hence also a form of rehabilitation.

    For what it's worth, on the sole basis of this abstract, I believe they are saying that patients still expect to return to pre-illness levels of activity, and pre-illness approaches to life. I am in 'two minds' about this. I think right up until I finally accepted the offered pension from the Bank, after 3 years or so, of enforced convalescence and attempted return, sometimes in a reduced capacity; I think until I had tried my hardest to return to what I once was, and failed, I had not accepted my situation and felt that 'feeling better' and 'recovery' was to be expected and striven for wholeheartedly. Indeed that the only thing holding me back was, well, me. But that proved not to be the case - there was no 'going back'.

    Of course the hardest part - aside from periodically being unable to do very much at all by way of participation in a job, let alone in education - was in trying to get others to accept by reduced abilities. This is something the above study makes no reference to. If everyone you are surrounded by is expecting you to recover and 'be yourself once again', to assume the roles and responsibilities, and station, you once had: it makes it even harder for the patient to accept his life is changed now.

    So I think there is responsibility on 'both sides' as it were in terms of rehabilitation. I recall one letter I received a copy of from the local ME Service, saying to some effect that 'Russell is adjusting well, and coming to terms, with his inability to work'. Of course such letters of support, are dependent on individual circumstance and I am not suggesting that a diagnosis of ME should automatically equate with a person's not being expected or able to work. And it does very little to remove the 'guilt' or feelings that I do still possess to want to do more.

    What I think is therefore at times missing from any proposed 'treatment' programme, is the degree of personal follow-up intervention and support that I and others have received. These may not be ideal - indeed they are very much subject to available funds - but I think they are important. A published paper of course cannot seek to address patients as individuals - but as is often the case - the interpretation of the reported results are taken on board by those who apply such treatments to patients by way of clinical care. So there exists this evident danger of application without thought of consequence or of treating the patient as an individual.

    Anyway, as a result of my 'therapy' my total levels of activity have not increased - this is very true - but that was not expected. My life (whilst already on a relatively firm footing in terms of acceptance and organisation due really to the 14 years since I was diagnosed and my many failed efforts at 'return to normality'), and the attitude towards me from others whose opinions I hold in regard, has been 'rehabilitated'. And I think, my GPs attitude has warmed to the notion of ME as a consequence - for what that's worth.

    It would be marvelous I agree, to see Pemberton state that the degree to which patients are given to think they will recover is part of the problem - and that PACE has been misrepresented by those authors, the media and by clinical practitioners in that regard i.e. that exercising more will lead to recovery in the true definition of the word. But I doubt very much if even the full paper will reveal this - and anyway the study was relatively small and may not therefore be usefully applied across the board.

    It is though interesting to see I think, which is why I posted it here originally.

  17. Gijs

    Gijs Senior Member

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    Wow, i don't wanne be rude but i dont' no any ME-patiƫnt who can exercise so much as you can. I don't even know healthy people who exercise so much. Did you ever have a 24 or 48 repeated exercise test (CPET)? i would like to know how much your Vo2max and AT thresshold would be. When i only exercise 5 minutes on a bike i get PEM.
  18. Valentijn

    Valentijn Activity Level: 3

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  19. Valentijn

    Valentijn Activity Level: 3

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    The common meaning of "rehabilitation" suggests restoring to a normal or healthy level. But what you're describing here is adaption, coping, and management. In fact it's rather contradictory to the concept of rehabilitation.

    Either the paper is talking about restoring patients' health through CBT/GET, or they're accepting the horribly mangled BPS definition of rehabilitation. It could be the same thing which happened with PACE, where casual readers assumed that "recovery" meant "recovery". Theoretically that shouldn't happen to researchers, but it's certainly not uncommon.
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  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Interesting definition here.

    (my bolding)
    Particularly relevant to us is:

    Another bit that is ironically pertinent in view of PACE's failures:

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