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Is there any evidence that deconditioning alone causes pain and fatigue?

Discussion in 'General ME/CFS News' started by oceanblue, Apr 29, 2012.

  1. oceanblue

    oceanblue Senior Member

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    Thanks for digging that one out. I had seen it and of course it commits the schoolboy error of confusing correlation with causation (what the ???? are reviewers doing?). Compare this with the pregnancy and pain/deconditioning study DQ posted which looked at a time sequence and found that in fact pain came before deconditiong.

    very belated edit: For completeness, it's worth pointing out that the 1998 Lorenzo failed to used properly sedentary healthy controls so the differences between controls and patients tell us nothing.

    Like you I have found surprisingly little evidence linking decon to symptoms - and actually haven't seen any evidence that atrophy causes pain and fatigue either, so rest easy in your bed... Think the NASA review of decon of healthy volunteers will be key but it's a bit of a monster and I don't have the energy right now.
     
  2. Esther12

    Esther12 Senior Member

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    Thanks for all the papers fire.

    From what I've read recently, I've got the impression that few psychosocial types are still defending the notion that deconditioning is a significant cause of disability in CFS... even if they still want to be paid to recondition patients. It's not quackery though... it's sophisticated biopsychosocial pragmatism.
     
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  3. Firestormm

    Firestormm Guest

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    You know all I see when I have been working/socialising with other folk with neurological conditions is the NHS pushing exercise. It isn't just us although with little else being advanced and accepted by NICE it certainly feels like it.

    Patients admitted to hospital are these days discharged more often than not before they are ready. Rehabilitation involving predominantly exercise is seen as the carte blanche approach to everything including pain and especially fatigue but also strokes, MS, Parkinson's - you name it and exercise is the prescription.

    'Improve your quality of life with exercise - you can beat it - keep fighting - don't give up'. Trouble is that when you can't you feel like shit for not being able to and dread the inevitable hints to your lack of 'motivation' and then enter the 'depression' diagnosis.

    Enter the whole 'positive thinking' meme. To which I direct you to e.g. 'Why staying positive WONT speed recovery': http://www.dailymail.co.uk/health/article-2081407/Why-staying-positive-WONT-speed-recovery.html and 'Smile or Die: How Positive Thinking Fooled America and the World' http://www.amazon.co.uk/Smile-Die-P...1738/ref=sr_1_1?ie=UTF8&qid=1325598899&sr=8-1

    It's just this whole business of them assuming we are not doing all that we can when what is really happening is that we are not capable of doing all that they want in the way in which they want us to.

    Apologies for the digression Blue :oops:
     
  4. barbc56

    barbc56 Senior Member

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    What I don't understand is why GET and CBT are suppose to be the only treatment options that are proven to work. Setting aside the topic if these studies are even valid, what about medications? Sleep interventions? Pain management? Have there been no studies that these and other treatments can help with the symptoms? I would think there would have to be such studies.

    GuessI need to do a search.

    Barb C.:>)
     
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  5. HowToEscape?

    HowToEscape? Senior Member

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    My 2c:
    I have always found that for me at least, moderate lack of exercise - that is, work at a desk with no particular workout regime - caused general malaise, muscle tightness, back problems and poor sleep, at a minimum. That was before CFIDS, during a period of about a year when I "didn't have a spare minute" for exercise. After getting a clue of the effects I resumed working out. It took several years to get back into decent shape.

    Life with this disease is quite different. I cannot imagine how inactivity which was a bad thing before has become a good thing now, unfortunately it's largely enforced by the disease and a 70% drop in income. There were times where I didn't make it further than the front door for some days - the front door of a small apartment, not front door of the building. I believe my severe lack of exercise now is making matters worse, but first I have to hunt for a stable place to live, answer the mail, cook, shower and get to the doc before I can budget energy and post-action crash time for exercise.

    slightly O/T:
    I find that the crash from targeted exercise, such as going for a "run" (typically averaging a brisk walking pace, but attempting to run) for a strictly limited time is different in kind and quality than a crash from running errands, standing too long or any prolonged period without a horizontal break. The post exercise crash is more certain to occur, of shorter duration and resolves more fully. If I'm able to sustain it for about a month, the post exercise crashes become shorter but do not disappear entirely, and I feel lees bad in general, even having a good day occasionally.
    For me at least, it's much better to attempt 10-20 minutes of working up a sweat than seemingly harmless "normal" activities. 45 minutes of slow walking or 7 hours with no "exercise" but without being horizontal in a quiet place can lead to a several weeks long crash with no well defined resolution and (obviously) no benefit of any kind.

    So
    1. No, CFIDS is not caused by lack of exercise, should anyone reading this have that notion
    2. Lack of exercise, in my experience at least, does cause an overall weakening which increases the effects of the disease. The times when I made some degree of progress were also when I had the physical ability to exercise in controlled doses, was in a neighborhood where I could work out starting from the front door *and* had other things in place so that I could afford the crash for a few hours or days afterwards. That was only possible once I'd gotten past the flat on the bed stage - the exercise periods were preceded by near total rest. If you can't make it to the front steps without getting woozy then do not try going out for a run.

    The human body is built so that it requires activity. If we don't move, we rot. Of course with this disease if you put your energy into exercise, you will have burned through the functional time needed to answer your mail, cook the next meal, and so forth. 20 minutes of exercise plus a shower knocked out at least a full day back when I was able to handle it.
     
  6. barbc56

    barbc56 Senior Member

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    @HowToEscape I heartily agree with the points that you have made. Even people in comas get some kind of physical therapy, movement even if it's to prevent bed sores.

    As far as our cure DD, deconditioning has to play a part but only a small part. I try to exercise within my capabilities without crashing. This sounds easy but it isn't and TBH, I often don't do this.

    Deconditioning can lead to fatigue but that's not CFS/ME


    Thanks.

    Barb C.:>)
     
  7. oceanblue

    oceanblue Senior Member

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    Missed your earlier comment. It's explicitly in the PACE GET rationale. From the paper:
    That's one of the reasons I want to go after this claim.
     
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  8. Esther12

    Esther12 Senior Member

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    @ OB: I think that in the PACE editorial they revel in the evidence against the likely truth of these assumptions, and talk about the pragmatic basis for continuing such treatments anyway.
     
  9. oceanblue

    oceanblue Senior Member

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    Can you do me a favour and dig out the relevant bits?The PACE authors themselves didn't retrreat from their decon argumentso I still think its worth pointing out.

    ETA: found it. The reason they push decon less is it's the Dutch school talking and their (deeply flawed) analyses concludes the underlying problem is symptom focusing not deconditioning. Still seen nothing from Wessely, White or Chalder that retreats from decon as the basis for GET- let me know if I've missed something. Thanks
     
  10. Esther12

    Esther12 Senior Member

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    Hi OB. This isn't something that I know much about, or have been collecting references for, so it could be that all the pieces I've seen have referenced the same paper and given me a misleading impression.

    I remember starting this thread (and I start few enough threads that they can be easily found): http://forums.phoenixrising.me/inde...deconditioning-not-seeming-to-play-a-pa.6659/

    Linking to a review from 2008 that says:

    "However, research findings about the precise role of physical deconditioning in CFS/FM are equivocal. Taken together, findings converge to suggest that the degree of physical deconditioning varies significantly among patients and that in contrast with previous theories this factor does not seem to play a specific pathophysiological role in the illness.27"

    Van Houdenhove B, Verheyen L, Pardaens K, et al: Decreased motor performance in patients with chronic fatigue syndrome: should we treat low effort capacity or reduced effort tolerance? Clin Rehabil 2007; 21:1121–1142[Abstract/Free Full Text]

    Really, the piss-poor results from GET alone should indicate that de-conditioning is not the primary problem.

    I thought that there'd been some work from non-psychosocial researchers which seemed to challenge the significance of de-conditioning in CFS too, but I can't remember details I'm afraid.

    edit:

    Purely for fun, just after acknowledging that, in contrast to previous quackery promoted to patients, deconditioning does not seem to play a specific pathophysiological role in the illness, they go on to say:

    Stuff like that, I really want to be fictional, so that I can enjoy the comedy of it without having to acknowledge the impact these people have upon the way in which I'm viewed by others.
     
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  11. CJB

    CJB Senior Member

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    Sorry, I haven't read through the whole thread, but the answer to the OPs question in my own personal experience is a big fat NO.

    40 years ago, I suffered an appendicitis attack that went undiagnosed for a week leading to peritonitis. I was literally on my back in bed for 4 weeks in the hospital and was in such a state of deconditioning that sitting beside the bed in a chair while the sheets were changed totally exhausted me to the point of falling asleep for 4 hours.

    The next day I made it to the door of my hospital room and back to bed. The next day out into the hall. The next day down the hall and the day after that I was doing laps.

    Ditto after two other abdominal surgeries and a rear-end car crash. I was able to slowly walk my way back and the improvement could be noted on a daily basis. Every day I got stronger.

    Contrast that with CFS. Every attempt I have made at anything that resembles exercise or repetitive movement (particularly arms overhead or something like walking) increases flu-like symptoms, malaise, mood and pain. Exercise makes me sick.

    I was an active person before CFS. I cycled and did aerobic exercise and yoga on a regular basis. I got together with friends to go on puppy walks - each with our dogs. I believed that I could cure myself with a good diet and the right exercise.

    I was wrong.
     
  12. oceanblue

    oceanblue Senior Member

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    @e12. Bleedin' hell, another paper to read! I mean, thanks, that looks highly relevant.

    Meanwhile, here's one I prepared earlier:

    A Google search reveals surprisingly little about deconditioning and fatigue - beyond assertions about CFS
    which makes me suspect there may be no good evidence out there. It's been suggested as a mechanism in both stroke and MS but the evidence available doesn't seem to back up the assertion.

    Here's a recent Review of the link between fatigue and deconditioning in stroke:

    Love their wishful 'conclusion'.

    A cross-sectional study on 112 MS subjects:

    Annoyingly they don’t mention the findings on fatigue & deconditioning in the abstract, but as it was a specific hypothesis and they don’t mention it, I suspect they drew a blank on that too.

    A 2007 pilot study and a larger one from 2009 found that exercise training substantially increased walking ability in fatigued MS patients (unlike GET for CFS), but had no impact on fatigue. Which is particularly interesting as the authors believe the reason their intervention worked was that it overcame deconditioning ie reducing deconditioning improves walking yet not fatigue. Yet the 2009 study still recycles the deconditioning argument:
    Conversely, another study found cycle ergometer training did improve fatigue - though so too did Yoga, which doesn’t improve aerobic conditioning. Finally, two studies promoting energy conservation, the second one quite large, also found improvements in fatigue – despite being the opposite approach of exercise therapy. Overall, the balance of evidence is against deconditioning from having a substantial role in fatigue in either MS or Stroke, despite researchers believing it would.
     
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  13. Esther12

    Esther12 Senior Member

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    Sorry to add to your reading list OB.

    There does seem to be a hunger to emphasise the role of deconditioning in all manner of conditions. I could make some guesses as to why that would be, but I also feel like there's something going on there that I do not understand.

    The conclusion you put in blue was pretty good. It's a shame that there's so little concern about that sort of thing. It seems so commonplace for a paper's conclusions to be unsupported by the data presented.

    PS: I think that often more can be learnt about CFS by reading non-CFS papers than those by 'CFS specialists'. A lot of similar issues can be found, but tend to be discussed more seriously, and with greater concern for the interests of patients.
     
  14. Sean

    Sean Senior Member

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    Slam dunk, in my book.


    Never underestimate the tenacity of a false belief, once it is established wisdom, and a convenient source of authority and income.
     
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  15. alex3619

    alex3619 Senior Member

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    Hi Barb, its about Evidence Based Medicine and the insistence that RCTs are the only Gold standard. They use this as their mantra, ignoring the way that RCT grade of evidence is actually treated, and so can claim that they are the only evidence based treatment.

    In reality high quality evidence can be evidence standard upgraded under EBM. The results from antivirals in CFS and ME for example are so strong that I think they constitute at least an equivalent evidence base to that claimed by CBT/GET proponents.

    The opposite is also appropriate under EBM. I think the effect size of RCTs of CBT/GET is so small it qualifies for evidence downgrading - its well within the range that can be accounted for by bias.

    Under these conditions the evidence base for antivirals is higher than for CBT/GET. They do after all get an order of magnitude better response in patients.

    To Oceanblue, I think the question you originally asked is a good one - I agree with DQ in that respect. Our problem though is they will say deconditioning is only part of it, the other symptoms are really due to psychosomatic effects, so the question is irrelevant. They have a double standard of evidence, biased in their favour.

    Asking questions is the only way to deal with dogma and ignorance. Its at the core of my philosophy.

    Bye, Alex
     
  16. barbc56

    barbc56 Senior Member

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    Actually, it's a bit more complicated than that.

    The scientific method, and RCTs are the gold standard. First RCTs, followed by a priori (plausability) as well as the knowledge base of how the body works. It's a hirarchy.

    The scientific method in not simplistic but includes a wide base of knowlege such as statistics, methodology, etc. as well as a knowlege base of the subject being studied. I have taken courses in statistics and experimental design and that's only scratching the surface of what is needed to know when running an experiment. The scientific method didn't suddenly appear from nowhere but years, decades, centuries of knowledge built upon knowledge. Science evolves and is not static and that is what's so exciting about it. 

    Part II below as my reply was shortened. I also coulndn't spellcheck so please exuse any errors in spelling.
     
  17. barbc56

    barbc56 Senior Member

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    Technically there is a difference between evidence based and science based medicine. Science based medicine takes into account the probability of a hypothesis whereas evidence based medicine doesn't take this into account as rigorously. So in EBM the studies may have a lot of flaws. it's this category that tends to" ignore the grade of evidence".


    SBM does not just rely on RCTs. The following is from the Science Based Medicine blog. There are lots of clickable resources within the article which are absolutely fascinating.
    http://www.sciencebasedmedicine.org...l-in-the-journal-of-clinical-oncology-part-1/

    As for my question about the reliance on CBT/GET, it was suppose to be rather rhetorical. But I may have failed to make that clear. There are studies which include medications, sleep interventions pain management but I believe that claiming CBT/GET is the only treatment is a skewed view and does a disservice to those with our DD when these treatmennts dontt appear to have equal weight.
    Barb C.:>

    ETA
    I have no idea what is going on with the font size. I think this subject would make a good thread and was going to do that as it's really off topic but atm,, I hesitate to move it. before I go to the technical support forum.
     
  18. alex3619

    alex3619 Senior Member

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    Hi Barb, the psychologizers don't recognize science based medicine, only evidence based medicine, and yes there is a heirarchy in EBM and ONLY RCTs are at the top in the original view. This is their claim to being evidence based. The more recent interpretation is that outstanding results can be raised a category, while poor results can be dropped a category. Maybe I should write a blog on EBM. There was a Cochrane review of CBT/GET a few years ago that I am sure they are citing as evidence that they are the only evidence backed treatment.

    The main point of EBM is to debunk and deny anything that is not RCT. So many cases of highly probable studies, based on sound known mechanisms, have been shown to be wrong. I have previously given the example of drugs to treat heart arrhythmia. This gives preeminence to studies from drug companies, as not many have the funds to do RCTs.

    SBM is a competitor to EBM and is not recognized by proponents of the EBM, has not been widely adopted, and currently has limited influence. EBM is being backed by those who want to take administrative control of medicine - science doesn't sway them very much I am afraid. They are using management principles and not scientific ones, its not a scientific agenda.

    I do love the parachute article though - its a beautiful parody. I am not claiming that EBM is optimal, only that the psychologizers use it in their defence.

    It is well known in logic circles that prior probability often fails as well - RCTs have frequently debunked prior high probability assessments.

    To sum up, SBM is irrelevant to the point of my post, as the psychologizers are not using it for their evidence claims.

    Personally I would like to see a lot more science and a lot less management in EBM.

    Bye, Alex
     
  19. Esther12

    Esther12 Senior Member

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    re RCTs: One other problem with them is that they seem an enitrely inappropriate way of assessing psychosocial interventions.

    eg: Encouraging patients to view deconditioning as a vital perpetuating factor may encourage a greater sense of control and responsibility for their condition which could improve some measures of functionality compared to patients in a control group... but there are also social affects which will not be captured by the RCT. Societies which view deconditioning as a vital perpetuating factor in CFS are likely to treat patients with CFS very differently to societies which do more to acknowledged the uncertainty around the cause of CFS (and the evidence against the importance of deconditioning as a perpetuating factor). Having society wrongly assume that deconditioning is a vital perpetuating factor for CFS is likely to cause all manner of problems for patients.

    (The above rather assumes that deconditioning style GET is more effective than it's been shown to be for the sake of simplicity.)

    Some psychosocial researchers seem to think that just saying 'that we think patients should be treated as if deconditioning is a vital perpetuating factor does not show that CFS is a result of deconditioning' will allow them to avoid these problems... which is either dishonest, or else indicates a terrifying degree of psychosocial incompetence.

    re deconditioning post-stroke, brain injury, CFS, MS, etc: very few of us are in peak condition. Generally, people balance up their desire to improve physical conditioning with other desires. Prior to getting ill I never gave a thought to maintaining physical fitness because I enjoyed going for long walks, dancing, etc, etc. I'd normally be able to win the long-distance race from club to flat!

    For a range of conditions which reduce capacity and make physical exercise less enjoyable, it could well be reasonable for individuals to choose to have higher levels of deconditioning. It could also mean that it is reasonable for them to decide to make more of an effort to avoid a cycle of increasing deconditioning. I expect that often a balance would be found at a lower level of conditioning than that found in healthy people. Some of the deconditioning work seems to start from biopsychosocial assumptions that those with health problems have a responsibility to re-shape their identity purely to pursue some imposed measure of functionality, and I do not think that is fair.

    I'm also interested to know about how they account for the costs borne by patients. eg: In a trial of cost effectiveness of getting an arthritis patient to do two hours of exercises a day, against a pharmacological alternative, which found both treatment to be equally effective, what sort of cost would be attributed to the burden placed upon the patient? Claims of deconditioning seem a good way of shifting responsibility and costs of treatment from medical services and on to patients. If this is done due to an exagerated sense of the importance of deconditioning, then that's deeply worrying.

    I see that advantages of both SBM and EBM. However think that there's a real danger that emphasising the importance of the plausibility of a hypothesis will serve to promote the prejudices and instincts of those in authority. One problem with EBM is that it can be used naively, when there are often serious flaws in the way in which medical trials are run and data collected and analysed. The embarrassing fact that EBM would seem to support the use of certain implausible alternative treatments should not be used to legitimise the use of those treatments, but to de-legitimise that use of 'plausible' treatments which have been shown to be no more effective. Researchers will be produce data to support their prior beliefs, without needing to be intentionally corrupt... this can distort the results around all manner of treatments though, and I think this means we should take a more cautious approach to the promotion of any medical intervention, regardless of how well it fits with our own prior beliefs and assumptions.

    edited: to change 'legitimise' to 'de-legitimise'. Whoops.
     
  20. alex3619

    alex3619 Senior Member

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    One of the problems is in what is measured. If we want to study deconditioning, what should we measure from a study? That is based on the model. If the model is wrong, then the wrong things will be measured. It is clear this has been happening with ME and activity - so far as I am concerned the evidence all points to graded exercise causing a compensatory decline in functional capacity - we can do more by virtue of doing much less in other ways.

    At no time is their underlying theory properly modelled, tested or examined. What they test is an outcome measure - like attitude improvement after a year of cognitive behavioural therapy. Thats just bias in my view - of no real relevance given the tiny effect size.Its a similar story for graded exercise outcome measures. The improvement is so small it is easy to account for it in other ways - they have demonstrated nothing aside from the fact that they can repeatedly create low value studies.

    Where are the biomarkers for their psychosomatic viewpoint? They have to exist, or they cannot account for the myriad biomedical findings. I am aware of at least two studies where they looked at potential markers, but having found something interesting they then drop it and go back into full psych mode. They even ignore their own biomedical data.

    To ignore biological mediators for the thousands of known physical abnormalities is also not BPS. There is no bio- in this. If they were serious about BPS, they would be looking at biological mediators of deconditioning or exercise outcomes or fatigue. They could then track the biochemistry and complete the puzzle. However this would be biomedicine - even if we presume the ultimate cause is psych. Psych cannot produce physical outcomes without biological mediators to drive them. Its impossible. If they could prove a psych driven biophysical outcome then they would have completed the Holy Grail of psychosomatic medicine. Instead they just ignore the physical. Its a deep flaw in their methodology and exposes a strong bias.
     
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