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Scary new paper on CFS and exercise

Discussion in 'Latest ME/CFS Research' started by biophile, Jun 3, 2012.

  1. biophile

    biophile Places I'd rather be.

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    Can they? I have not seen the full text yet, but the conclusions are concerning if they are based on 12 CBT and GET studies which generally do not demonstrate compliance from patients and just assume patients are exercising. This is one of the reasons the PACE conclusions are so dangerous, they concluded that CBT and GET, with the rationale that patients should challenge their self-imposed boundaries and increase activity, is "safe", yet without published evidence that patients were actually increasing activity as presumed.
  2. floydguy

    floydguy Senior Member

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    Once again demonstrating the dangers of defining "CFS" based on "fatigue". At least if it was based on "Low NKC Activity" the goal would have to be to increase that level. But basing it on "fatigue" opens it to being a field day for the psych industry.
    beaker and Enid like this.
  3. SOC

    SOC Moderator and Senior Member

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    Idiots.
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  4. alex3619

    alex3619 Senior Member

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    No paper on exercise that does not mention the biomedical evidence on ME and CFS regarding exercise has any credibility. This is just one more bad study based on claimed evidence. The evidence base in support of these is misleading. The success rate is so poor or so poorly characterized that it falls within expected bias - there is no objective evidence in support of it, and indeed all the objective evidence (actometers etc.) show that exercise doesn't work or makes things worse. You would think that after 862 patients in Belgium failed to recover, and the average patient got worse, that they would have figured this out. If insanity is repeatedly doing something that does not work then these people are lunatics.

    Even worse the underlying disease model they are using is completely unsubstantiated and untested - its just popular. Popularity has no place in medical science ... witchcraft was popular once too. To the extent that they have tested treatments based on their model they have in fact demonstrated that their model (the idea of dysfunctional beliefs in CFS) is inappropriate at best, and completely wrong at worst. There may indeed be a small subset of patients who benefit from their approach but their methodologies cannot identify them. They claim to be into BPS but they ignore biomarkers - that would be part of the B part of BPS. Only biomarkers are going to tell them who to treat and not treat. Its time they woke up or abandoned the approach entirely - and I think the evidence is fairly strong that abandoning the dysfunctional belief model is the wiser course of action. Most of Freudian theory is dead, this is a last bastion of Freudian thought (along with conversion disorder) that survives only because they keep redefining it and then claiming the newly defined disease has not been disproved.

    Bye, Alex
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  5. SOC

    SOC Moderator and Senior Member

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    Yeah, that's what I meant. :p
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  6. PhoenixDown

    PhoenixDown Senior Member

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    You got a link to that study?
  7. alex3619

    alex3619 Senior Member

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    Hi PhoenixDown, there is a thread here: http://forums.phoenixrising.me/inde...gian-cbt-get-rehab-clinics-large-sample.6072/

    This was not really a study, it was a report on the use of CBT/GET in real life. While they claimed improved fatigue based on questionaires, the only objective outcome was work participation: it went down four percent. Other studies using actometers have shown either no improvement or a worsening of functional capacity.

    I don't care about fatigue, I care about what I can do. What I can do is my functional capacity. If they want me to feel better they can save themselves a lot of money and send me a regular gift basket - it would be cheaper than CBT/GET. If they want me to actually be capable of doing more, they are going to have to lift their game into the realm of real evidence.

    Bye, Alex
  8. Sean

    Sean Senior Member

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    I stopped there.
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  9. Hope123

    Hope123 Senior Member

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    Does anyone have the full text?

    This is the same journal that published this article by Julia Newton last year and it might help to refer to it, among others, if people are planning to write in.

    Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case–control study

    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2362.2011.02567.x/abstract
  10. ramakentesh

    ramakentesh Senior Member

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    Interesting but I dont find it particularly scary :) Some recent work on POTS and OI suggest that exercise can have significant benefit at least in the short term.
  11. Valentijn

    Valentijn Activity Level: 3

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    Too bad we're not able to appreciate those theoretical benefits while extremely sick from PEM.
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  12. user9876

    user9876 Senior Member

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    They have never really tried to test their dysfunctional beliefs theory. If they had they would do CBT aimed at changing beliefs vs CBT aimed at helping people cope and compare the results. I think they know what they would be and therefore don't do the experiment.

    On the subject of exercise. I believe there are some theories that suggest some exercise can help with mitrocondrial problems (ok I can't remember where I read this) and there is a trial with exercise + suplements. Again it would be interesting to contrast this to their "deconditioning" theories.

    Its interesting that they say aerobic exercise (which I assume suggest very low intencity) since this would avoid many of the problems with Lactic acid which is what I assume Julia Newton's article is about. However they then go on to suggest just scheduling an exercise programme and saying don't look at symptoms. This is worrying since it removes a feedback loop to suggest the exercise is too much. I get the impression that a major problem with GET is that patients are told to over do the exercise and thats when the really servere damage is really done.
  13. alex3619

    alex3619 Senior Member

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    Hi ramakentesh, the issue with OI and POTS is that building up the leg muscles can be done with weight training or similar load bearing exercise. It can be done in interval training style. The research is showing that the damage is done to us by exercise from primarily extended aerobic exercise, exactly what is prescribed in this paper. Bye, Alex
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  14. biophile

    biophile Places I'd rather be.

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    I used the word "scary" in the title and "concerning" in the post.

    The reason this paper is "scary" is because of the notion that a review of the evidence for CBT/GET suggests there is no reason why patients cannot start doing 5-10 minutes of "aerobic exercise" 5 times per week and work up to 30 minutes per session. That represents such a dangerous disconnect with the reality of many patients' lives. This amount of exercise may not sound like much of a problem for either mildly affected patients or patients who do not experience much post-exertional symptomatology. But for other patients it is literally scary and could ruin their health, not because they have an irrational fear-avoidance of activity, but because their activity ceiling is real and they know what awaits them when they breach it.

    The reason this paper is "concerning" is, I know enough about CBT and GET studies to be suspicious at the kind of sweeping conclusions made in the abstract of this review paper, although to be fair they included a caveat. Anyway, I since had a look at the full text. The introduction is average for a review paper, although it would annoy some people that they refer to the 2011 ME-ICC as a "CFS" definition. Moving on ...



    We can? Well I don't have the equipment to measure VO2, but I'm always suspicious about claims about what patients can supposedly do without symptoms. ([12] = Wallman et al 2004 - Randomised controlled trial of graded exercise in chronic fatigue syndrome.).



    The caution wording of "if" and "may" is later replaced with allusions that it actually occurs in CBT/GET studies (despite no convincing evidence that it does).



    This paper is littered with p values without accompanying effect sizes, that is just one example.




    My previous suspicions about this review paper are confirmed. Here the authors make claims about what the PACE cohort supposedly did, it is just assumed the GET group successfully worked towards 30 minute sessions of light exercises 5 times a week and then increased intensity, even though there was no published data to support this assumption.

    Similar claims are made about another study but I would have to re-familiarize myself with that before commenting. (Fulcher & White 1997 - Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome.)



    You couldn't pay me enough to do several hours of walking/swimming/cycling per week.



    But didn't the only RCT available on delivering CBT in primary care setting find it to be useless?



    Finally some reason, except of course the psychobabble about patients needing cognitive restructuring. Better not tell the authors of the editorial accompanying the Lancet publication of PACE, that recovery is "rare", since they (erroneously) claimed a 30% recovery rate and have claimed elsewhere that recovery should be the common goal.

    Under study limitations they state that "Most studies gave no information addressing the treatment compliance." Yet almost the entire paper is based on presumed compliance! I'm sort of surprised they could make such a blunder as to call these recommendations "evidence based" when there is little or no evidence of compliance for which these guidelines are based on, am I missing something?

    They also mention that the review quality would have been better if the studies "were assessed by an independent jury" but point out that the assessor (with a master of science degree in rehabilitation sciences) was new to CFS and had no ties to GET authors so therefore could be regarded as independent not biased. However, one could argue that someone fresh to CFS might still already have presumptions about CFS. Just mention CFS at any dinner party and watch the psychobabble and quackery flow.



    So according to these authors, I can supposedly do exercises up to 140 bpm without causing symptoms? I wish. I can't even take a shower without symptoms and POTS, which doesn't usually exceed 140bpm in the shower.

    Overall, I conclude that my suspicions were correct. The review paper does not support some of the sweeping claims it makes. It is unsurprising that "The most common shortcomings in the RCT’s were a lack 4 of adequate randomization, failure to apply intention-to-treat analysis, inadequate or missing information about the blinding of patients: assessors and impact assessors, and inadequate or missing information on the degree of compliance: side effects and co-interventions."

    Many of us have been around long enough to have tried countless different modes of self-exercise, supervised GET, resistance training, rehabilitation, etc, all without success and with significant adverse effects. I'm just one anecdote but apparently there are countless others like mine and much worse than mine. Again, the activity ceiling is real and we need capacity for other more important activities. I'm certainly not going to sacrifice other areas of my life or risk my health with several hours of aerobic activity a week simply because some physiotherapist was mislead by poorly conducted research and believes it will be safe.
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  15. Valentijn

    Valentijn Activity Level: 3

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    Just to clarify ... are they using Post-Exertional Malaise as part of their ME/CFS description? Then supporting GET as treatment for it based on studies where PEM is not a part of the CFS definition used?
  16. oceanblue

    oceanblue Senior Member

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    Thanks for a great analysis, Biophile.

    On the positive side, I did like these quotes from the paper:
    That compliance issue is key:
    I find it impossible to square these findings with the minimal improvement in 6MWD reported for the PACE GET group (relative to the no-exercise control group). I can only assume that patients were unable to comply with the planned GET regime; maybe they had PEM?

    Did they mention that all the GET studies were of patients able to regularly attend outpatient clinics, and so any recommendations would only apply to that profile of patients.
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  17. CJB

    CJB Senior Member

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    Me too. Add that to the fact that most of us have experienced positive effects from exercise before we got ill and believe it will help and you have a recipe for disaster. I know it made me push way past my limits over and over early on.

    It's unfortunate that the only indication we have presently that someone is getting ill from exercise is their feedback. So at present, the only intelligent thing to do is to warn people off doing "too much" because we know for a fact that it can make people very much sicker. Which is why seeing these recommendations in writing is always chilling.
    Dolphin and biophile like this.
  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Hm these clowns remind me of sopmeone, oh who could it be...




    "I know NOTHING!" P

    well actually, no, Shultz was a nice guy in a bad situation, lol.
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  19. biophile

    biophile Places I'd rather be.

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    They accepted papers using any "official" CFS criteria, although from memory the Prins et al 2001 CBT study they included did not technically use an official CFS criteria, but Fukuda/CDC-1994 without the requirement of minor symptoms. Which reminds me of another point, IIRC most CBT/GET studies (or at least half) do not even use Fukuda/CDC-1994 criteria but weaker criteria like Oxford and even just fatigue scales, and unsurprisingly there is a trend towards stronger effect sizes in studies using these weaker criteria.

    This latest review paper doesn't appear to analyze the influence of criteria on the effect size of CBT for CFS. However, they do state that "The lack of uniformity in outcome measures and CFS diagnostic criteria make it difficult to compare the findings across studies."

    The authors do also note that "It is clinically not so straightforward to provide very strict time-contingent exercise therapy; we should also take into account post exertional malaise associated with CFS." They mention adapting to the exercise tolerance of the patient and recommend rests after exercises/activities "to account for the delayed recovery following physical activity".

    Similarly, the CBT/GET-proponent party line is that these therapies can only cause adverse effects if applied inappropriately.Of course, appropriate application, eg as per the PACE Trial, means that patients do not actually have to increase activity as presumed. Some evidence suggests that patients do not really increase activity anyway, so it is deceptive and unethical how CBT/GET studies are being used to conclude that it is safe to significantly increase activity.


    IMO the compliance issue severely undermines the conclusions of the paper. The authors only considered fatigue and physical function as outcomes, self-reported measures. It is the year 2012 and there is no excuse not to consider more objective data in such reviews. If the next Cochrane review update doesn't consider actigraphical data in their assessment I'm going to lose respect for Cochrane. I also want to start seeing more discussion about the fact that these studies aren't blinded, and other potential biases.

    Re patients regularly attending outpatient centers, as discussed in this paper some studies were more home-based, but they don't seem to take it fully into account, especially when claiming that "home exercises have no disadvantages". Overall, they conclude that "[T]reatment sessions at the centre ⁄ practice should be limited in number and should be used to discuss and adopt the exercise programme with the patient. The exercise therapy itself should be done at home."


    Haha. Perhaps Klink could represent the person in charge of rolling out CBT/GET for CFS in the NHS, while Shultz could represent the soft-hearted NHS physiotherapist who turns a blind eye to the patients who don't strictly comply to the overbearing protocol!
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  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    30min of exercise a day is easy for cfs and many can do more, depends what it is. I watch atleast 3 games of rugby league a week, a few exercise videos, a few movies where the cops are chasing the bad guys, music videos though really where me out, that could be all the girls in them.
    lol
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