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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. redrachel76

    redrachel76 Senior Member

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    It's a shame that this information is hidden in an obscure thread in this forum. I wish I could put it in a permanent website that always goes top of google results and is translated in every language for everyone to see.

    Goodness knows what harm has been done to newly diagnosed people.

    I saw a doctor/researcher yesterday who has the power to ask the ministry of health where I live to make a special case for me to receive Rituximab as a one off case. Before I could bring it up the doc goes into the exact PACE thing that is quoted above.
    He believes it, and even if he didn't he would probably have to recommend it anyway because CBT is the official recommended treatment for CFS/ME. CBT is in most of the fibro and CFS research papers he reads, other than Cymbalta and Lyrica which were unhelpful for me. He offered to get me Rituximab at the end but I have no desire to try this experimental drug with someone so ignorant.

    This information you've all got together should really not be stuck in this thread alone.
    biophile likes this.
  2. biophile

    biophile Places I'd rather be.

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    I have a present for you oceanblue, enjoy :) ...

    p24 claims that, the deconditioning model "should apply equally if not more to" the severely affected patients who were excluded from the trial, and that the major objective of GET is to exercise adequately for full health and to prevent disease ie "30-45 minute sessions of moderate intensity physical activity at least five times a week". This is even more physical activity than most healthy people achieve.

    It is odd how they state that the "most prominent symptom of CFS/ME is post-exertional fatigue", considering how their definition of CFS is baseline fatigue as the only main symptom, not post-exertional fatigue which they do not even require for diagnosis. And as they attribute post-exertional symptoms to deconditioning, this implies that the most prominent characteristic of CFS is deconditioning, which would be a ridiculous generalization for high functioning patients.
    oceanblue likes this.
  3. oceanblue

    oceanblue Senior Member

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    The plan is to write a summary of this, which might become a blog, but first I need to deal with Biophile's challenge. . .
  4. oceanblue

    oceanblue Senior Member

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    just what I wanted, thanks! :aghhh:

    It feels like a test: 'can you spot the 25 sleights of hands in this creative misinterpretation?'. It certainly reads like a convincing argument.

    I'll have a bash now and might do some more tomorrow.
    :eek: None of these are CFS so are not directly relevant, but it's worth noting that the effects in other diseases generally are rather modest, eg a Cochrane review of exercise for cancer fatigue found an effect size of only 0.23, which is small.

    :eek: The most authoritative GET evidence now comes from the PACE trial, which found only modest improvements in self-reported fatigue and function, while the sole objective measure of fitness, the 6MWT, found only a tiny improvement over 12 months compared with the control group - leaving CFS patients on average figures typical of those with serious chronic illness. Telling results, when GET aimed to "return a patient to normal health and ability".

    :eek: This is where it really falls down. Although the authors claimed exercise tolerance was less than sedentary controls, the controls were dodgy. Fortunately, there are population norms for the measure of deconditioning used in all these studies, VO2max, and in 4 out of 5 of these studies the CFS VO2max scores were at the low end of normal, but not abnormal by any means. Only 1 of the studies (De Becker [16]) did find evidence of deconditioning. They acknowledge that 2 further studies found no evidence of deconditioning and neglected to mention that a third study, Wallman, which they cite in another context, found that submaximal VO2 levels (more relevant to normal life) in CFS patients were no different than well-matched sedentary controls. So another way to summarise this evidence is:
    "7 out of 8 studies found exercise tolerance was normal in CFS/ME participants".
  5. oceanblue

    oceanblue Senior Member

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    rebuttal continued . . .
    :eek: Unfortunately I can't access the book [13] they reference, but if you read the rest of this thread you'll see that prolonged bed rest in healthy volunteers doesn't seem to cause fatigue, apart from mild fatigue in bed rest studies over 6 months. As for post-viral fatigue, it looks a bit desperate if they can only find a reference from 1961 [15. Dalrymple W. Infectious mononucleosis: 2. Relation of bed rest and activity to prognosis, 1961]. The title implies that longer bed rest correlates with more post-infectious fatigue, but correlation does not mean causation; longer bed rest might be a marker of a more severe initial illness. The recent Dubbo studies found that the initial severity of the infection (with infectious mononucleosis and 2 other infections) was a strong predictor of later fatigue.

    :eek: 11 & 14 are both the Fulcher & White study: exercise incapacity is correlated with muscle strength and sub-maximal heart-rate response in healthy people too, so I'm not sure what point they are trying to make. The heart mass study they quote, Lorenzo, is quite large but unfortunately didn't use matched sedentary controls so doesn't necessarily tell us anything either.

    :eek: Fulcher & White again. What they don't mention is that this study found the post-GET increases didn't correlate with any improvement in patients: "we found no significant association between feeling better after graded exercise treatment and becoming stronger or fitter". That does rather contradict their deconditioning argument. See above for correlation between exercise capacity and sub-maximal heart rate in healthy people too.

    Did I miss anything?

    So yes, the pitch in the PACE GET Therapist manual does look quite convincing, until you lift the lid. Then it's clear they've used the usual approach of closing one eye and squinting with the other until they can see what they want to see.
  6. Sean

    Sean Senior Member

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    And IIRC that includes some terminal illnesses (End Stage Lung Disease, Chronic Obstructive Pulmonary Disorders, etc). Some therapy.

    And then some. Not that it will stop them invoking 'deconditioning' as a central critical assumption for their model.

    For all their claims to be the 'evidence-based' side of the debate, they are remarkably willing to persistently ignore evidence seriously inconvenient to their agenda. How surprisement.
    biophile likes this.
  7. biophile

    biophile Places I'd rather be.

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    Good work oceanblue, I just knew you couldn't resist, hehe. Anything worth adding to the thread "Examples of misleading statements in CFS papers from biopsychosocialists"? Also, don't knock the one eye squinting method, I have a headache right now which is about the force me off the PC and I'm using that method to post! :p

    You may be recalling the paper which pooled the results from 11 different studies on a range of cardiopulmonary diseases, including end stage lung disease (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2882364/table/T1). The average 6WMD across all studies was 393+/-115m (higher than the GET group in PACE at 52 weeks ie 379+/-100m) but the specific study on ESLD was lower, at 294+/-139m, which is still closer to the PACE GET group than the latter is to a healthy group. Also, there are many other studies on COPD cohorts which score higher in 6MWD than the GET group in PACE, but this is probably not for end stages of COPD, which can be much lower (eg http://www.ncbi.nlm.nih.gov/pubmed/20040883).

    Perhaps they are practicing "citation-based medicine", where all that matters is making it look like there is a reference to back up a questionable statement which most people will never bother to investigate for themselves (ironically this often even seems to include the peer reviewers of the papers in question).
    WillowJ, PhoenixDown and oceanblue like this.
  8. Sean

    Sean Senior Member

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    "citation-based medicine"

    c-i-r-c-l-e j-e-r-k

    :whistle:

    And thanks for the 6MWT comparison diseases ref. The PACE 6MWT results might not be quite as bad as for the end stage of terminal lung or cardio-pulmonary disease, but not by much. Still leaves ME/CFS patients clearly down at the very sick end of the spectrum.
    biophile likes this.
  9. oceanblue

    oceanblue Senior Member

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    You know me too well. And I now wonder if biopsychosocialists have a perpetual headache.

    Love 'citation-based medicine'.
  10. Esther12

    Esther12 Senior Member

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    Another +1 for 'citation based medicine'.
  11. user9876

    user9876 Senior Member

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    It seems to me that too many people are doing 'evidence based medicine' with no underlying theory or model that they are trying to validate/invalidate. This means that their trials find correlation or a lack of correlation within a given situation. They or others then extrapolate to different situations and claim that this backs their views. This becomes easy to do since there is a lack of formal definition about what was tested and how that relates to the hypothesis and how that relates to any control.This lack of formality make reasoning about results hard, it means that you need to carefuly read all the papers to understand the detail of exactly what the trial was. It also makes it hard to talk about uncertanty associated with the evidence.

    There is a danger in going the oposite way and being overly formal. This is what some economists have tended to do where they describe the world in a set of equations and have a tend to ignore effects that make the maths to complex.
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  12. oceanblue

    oceanblue Senior Member

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    Think I mentioned already this is very much the Nijmegen perspective, and this seems to be is the key paper, concluding: "Physical deconditioning does not seem a perpetuating factor in CFS"

    The key figures are:
    VO2max (ml O2/ml/kg)
    CFS= 27.9
    Control=31.7
    The difference was non-significant, and, crucially, that CFS figure is within the low normal range for populations.

    I am still planning to write a summary of this thread but I've been engrossed by the Tour de France recently (why am I drawn to watching such an extreme endurance event?) which has given me better things to do. The Brits have finally arrived in Cycling.
  13. CJB

    CJB Senior Member

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    I don't know if someone else mentioned this, but the webinar just presented by the CAA spotlighted the Pacific Fatigue Lab and they said unequivocally that their testing ruled out deconditioning, motivation, depression and one other thing in their CFS patients.
  14. alex3619

    alex3619 Senior Member

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    Yes, and that might indeed be the case, but remember that severe patients are excluded from their studies. For a full account, for ME, CFS, COPD or whatever, the full spectrum of patients have to be taken into account. For a very severe ME patient thats a 6MWT of what, zero to ten meters? What will that do to the averages? Bye, Alex
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  15. oceanblue

    oceanblue Senior Member

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    Some interesting comments from the Bazelmans discussion section
    a) arguing against exercise programmes and
    b) concluding that factors other than deconditioning account for fatigue, impairment and low levels of activity in CFS patients


  16. Esther12

    Esther12 Senior Member

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    And the Bazelman's from 2001? You'd have thought it would have given pause for thought.
  17. user9876

    user9876 Senior Member

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    Only around 70% of all patients actually did the 6mwt in the pace trial. Not sure why but this could bias results significantly.
  18. biophile

    biophile Places I'd rather be.

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    Coincidently, the lowest participation rate just happened to be in the GET group too.
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  19. oceanblue

    oceanblue Senior Member

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    I'm confused, those quotes are from the Bazelman 2001 paper.


    I normally try to ignore inflammatory comments in these papers but the Fulcher & White first paper (1997) deserved a special mention for being so extreme:

    Or something else, perhaps?

    I find the timing of this interesting as in 1997 I was very severely affected and facing some very extreme attitudes from those 'treating' me. I actually think the researchers may have mellowed a teeny bit since, or become a little more circumspect.
  20. oceanblue

    oceanblue Senior Member

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    Another paper, this time for Adolescents, Katz 2010.
    Exercise tolerance testing in a prospective cohort of adolescents with chronic fatigue syndrome and recovered controls following infectious mononucleosis. Full text inc tables available here

    The study compared patients with a diagnosis of CFS 6 months after IM with a matched group of controls who had recovered from IM. Just wanted to pull out the deconditioning/fitness levels as VO2 max from the paper:

    VO2max, ml/min/kg
    CFS patients: 37.4
    Recovered: 40.9

    The difference was not statistically significant. Population norms for group of this age that is 85% female is around 40-49, so recovered patients (after 6 months) are scraping average while CFS patients are a bit below average, but by no means abnormal. This pattern must be looking pretty familiar by now.

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