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Scary new paper on CFS and exercise

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

  1. eve789

    eve789

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    hey, for you guys who know a lot of acidosis, can you please check this out: http://forums.phoenixrising.me/index.php?threads/acidosis.17808/

    And yes, scary, but it does explain a lot of my symptoms! I find that when I can understand what's going on in my body, why it's happening, and how to be good to myself, it becomes a lot less scary.
     
  2. oceanblue

    oceanblue Senior Member

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    Thanks - but did they recruit house-bound patients into the study, or were they merely advising outpatients to exercise at home (it would be expensive and impractical to bring patients in for supervised exercise)?
     
  3. biophile

    biophile Places I'd rather be.

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    They don't seem to discuss house-bound patients specifically, but they do say that the FINE Trial involved home visits and "showed significant improvement (P < 0.05) in fatigue and physical functioning".(?!)

    I don't know how they came to that conclusion, since the FINE paper itself indicates that immediately post-trial there was only a (rather small but still statistically significant) improvement in fatigue but not physical functioning, and no significant improvement in either fatigue or physical functioning at one year followup (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2859122).

    In a rapid response letter the FINE authors later said they recalculated changes in fatigue based on Likert scoring instead of bimodal scoring and found that the earlier improvement in fatigue was maintained at one year followup. There was no mention of physical functioning (http://www.bmj.com/rapid-response/2011/11/02/fatigue-scale-0).

    Perhaps there is a remote possibility that the authors of this recent systematic review (Van Cauwenbergh et al) extracted the FINE data and re-analyzed or combined it with Stulemeijer et al 2005, since both papers are discussed in the same paragraph on the issue of studies which used 10 individual sessions of CBT or GET, but the wording doesn't really suggest that is what they did.

    More likely the authors have committed a common blunder: claims are made which are simply not supported by the cited reference, despite being a "systematic" review. This seems common enough for CFS papers in general to become naturally skeptical about all claims being made, but who has the time and energy to evaluate every single citation of every paper while reading it, isn't that supposed to be the peer-reviewers' job?! I only picked up the discrepancy because I'm already aware of the FINE Trial data.
     
    Dolphin, oceanblue and taniaaust1 like this.
  4. Desdinova

    Desdinova Senior Member

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    Hum so they're part of a research group. I can't help but wonder how much real research with real patients especially ME/CFS patients?


    http://translate.google.com/translate?hl=en&sl=nl&u=http://www.chropiver.be/welkom-wie.htm&ei=Qg7OT8v5LoGy8ASDyN32Cg&sa=X&oi=translate&ct=result&resnum=9&ved=0CGsQ7gEwCA&prev=/search?q=Deborah+Van+Cauwenbergh&hl=en&safe=off&prmd=imvnso






    http://bodyinmind.org/primary-care-physical-therapy-treatment-of-fibromyalgia/


    http://www.researchgate.net/profile/Kelly_Ickmans/


    http://www.c4n.be/Main page/C4N/Members/MFYS/Leden/Predocs/Margot De Kooning.html


     
  5. Dolphin

    Dolphin Senior Member

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    Basic rules for letters for this journal:
    Article itself:

     
  6. Sherrie

    Sherrie

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    For me, it was weight training that bought out my ME and started the whole downward spiral. I found for reasons unknown to me at the time I couldn't find the "oomph" to do cardio including in intervals, whereas weights I enjoyed so weights I did. But after a while, I went down hill, my strength started dropping, fatigue until eventually I couldn't do it at all, lots of hormonal problems as well and eventually being diagnosed with a goiter and then 6 months later CFS. When I improved after a pregnancy then relapsed a few years later, same thing in regards to my activity levels suddenly started dropping and going backwards because of increasing weakness and fatigue for no reason.. How the fudge graded exercise would help that beats me!
     
    Dolphin likes this.
  7. ramakentesh

    ramakentesh Senior Member

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    The papers by Dr Ben Levine for OI and POTS are exclusively about cardiovascular challenging exercises like rowing and running.

    Im not syaing these findings are correct but just that the challenge the often cited view that all exercise is dangerous in CFS - at least in forms where OI and POTS predominate.
     
  8. ramakentesh

    ramakentesh Senior Member

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    I had PEM with POTS and managed to push through it with further exercise at one stage, yet at other I was sent on my arse.
     
    alex3619 likes this.
  9. SOC

    SOC Senior Member

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    I have a serious concern with their suggestion of aerobic exercise, too. In my case, and I think this is true for many PWME, there is very little aerobic range. Exercise testing showed that I do okay in the low-level anaerobic range, but in the aerobic range (where aerobic metabolism takes over most of the energy production from anaerobic metabolism) there's very little capability. I shoot from low-level anaerobic to high-level anaerobic in about 3 minutes, meaning there's very little time spent in the aerobic range because there's no energy there to work with. This is not what fat, deconditioned looks like.

    If I were to try to do any so-called aerobic exercise (walking, swimming, cycling) at this point, I would just shoot up above my anaerobic threshold in 3 minutes or less and be at the physiological place marathon runners are at the end of the race -- working at an intensity at which my body cannot produce enough energy by aerobic metabolism and has to rely on inefficient and waste/toxin producing anaerobic metabolism.

    This is why I think it's idiotic to do any exercise-based treatments on PWME without doing exercise testing to discover these kinds of abnormalities. All the CBT-GET clowns assume, based on no data (or ignoring existing data), that PWME have normal exercise capability and are just not using it. All they'd have to do is take some actual physiological data (heaven forbid) from their patient groups, sort those with normal energy metabolisms from those with distinctly abnormal energy metabolisms, exercise them appropriately for condition, and report the results honestly. That's too much to ask, though, I guess. :rolleyes:
     
    redrachel76, Dolphin, CJB and 2 others like this.
  10. Dolphin

    Dolphin Senior Member

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    Just curious whether anybody has sent a letter in reply to this article and/or is working on a letter?

    Somebody suggested I write a letter but before I start thinking about one I would like to know about any letters or draft letters to avoid duplication. It can take a bit of work to come up with the wording so I'd like to know in advance about any other letters.

    Please PM me if you have done a letter/draft letter. Thanks.
     
  11. barbc56

    barbc56 Senior Member

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    Oi!!

    Aerobic exercise? That's ridiculous. :(

    I did warm water therapy for a while which I have to say helped a bit but the problem was actually having the energy to get there. Even if someone offered to drive me, there would be times I would not have made it. The same thing happened when I was going to participate in a study on walking which was here at the University. Same with the Banabruk(???) study.

    Studies do not always take this factor into account. Although many do cite the drop out rate, what about those patients who would never be able to participate, even if they wanted to.? Researchers need to either considered this factor, do separate studies on this subgroup, at least state that the population studied didn't include this subset of patients and/or very specific definitions about the patients who did participate.

    I would be interested in seeing studies that do take the above into account but I have a feeling there are probably very few, if any. I am going to look for sources that have to do with experiment design. I have had several courses in this but tbh, I don't remember all of it. However, when I do read this information it comes back quickly. Usually.:rolleyes:

    Barb C.:>)
     
  12. Dolphin

    Dolphin Senior Member

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    They say:

    ---
    The paper has more provisos than most reviews I've seen that recommended CBT and GET. Currently I'm thinking I'll work through more items on my "to do" list rather than replying. Also, if anyone else replied, it might stand out more than me writing as I might be repeating myself. But if anyone does try and write, I should be willing to look over a draft.
     
  13. Dolphin

    Dolphin Senior Member

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    A few observations/comments for what they are worth:

    From Introduction:

    They don't inform readers about some other studies involving the corresponding author:

    and

    Do they? Given the corresponding author is in Belgium, this could be an excuse to quote the Belgian clinic data.
    ----
    There is lots of talk about exercise being shown to help "physical functioning"/"physical function". Although at one stage it is explained how this is done (questionnaires), it's not made sufficiently clear that the reported levels of functioning could be biased/unreliable.

    (will add more)
     
  14. Esther12

    Esther12 Senior Member

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    Ta D.

    They know it in the same way that homoeopaths know that they're helping.
     
  15. Dolphin

    Dolphin Senior Member

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    A few observations/comments for what they are worth (contd.)

    If the authors had used more databases as sources for their papers, or searched references, it looks like the following would have met the criteria:
    ----
    I don't think they make sufficiently clear that physical functioning (mentioned regularly) is a subjective measure, although they do mention the instruments used at one stage.
    -------
    It's interesting to see Table 1 (methodological quality), where the trials are poor in some area.

    -------
    They say, with regard to the PACE Trial, "In this study, the APT used a symptom-contingent approach,". This would certainly be true of normal pacing. However, APT also had a time-contigent component, I think it's fair to say.
    -------
    They list the following study

    as using a symptom-contingent approach [to exercise] which seems odd when they say GET in PACE used a time-contingent approach:
    --

    I find the way they treat these two papers as representing separate studies odd and non-standard.

    One (22) is just a follow-up paper on the other:

    ----
    As biophile (and possibly others) has (have) pointed out, it's incorrect what they say about the FINE Trial:

    This might be one solid point that could be included in any letter, allowing a letter writer to perhaps editorialise with other points.

    ---
    The description of the PACE Trial gives the impression patients actually did this amount of activity:

     
    biophile likes this.
  16. biophile

    biophile Places I'd rather be.

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    IIRC, in one of White's presentations on CFS, and judging from the slides alone, he was aware of the Jason et al study but just ignored it for some reason. Does that ring any bells?
     
  17. Dolphin

    Dolphin Senior Member

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    Good memory:
    I just searched my Peter White folder.
    For the Bergen 2009 presentation, he had:

    Then a bar chart of the combined results for percentage improved for each trial.
    The Powerpoint file doesn't give the text it'd be a guess why it was excluded.

    They did get over Vincent Deale to try to replicate "UK" (my words) CBT:

     
    biophile likes this.
  18. biophile

    biophile Places I'd rather be.

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    Thanks for digging that up. PACE could have learned a thing or two from Jason. He engaged in known professional/published proponents of UK style CBT to help design his study. PACE should have engaged in known professional/published proponents of envelope theory and classic pacing to help design their study, not just use a patient organization to sign off on a less-practiced APT variant which is now being used to dismiss all pacing.
     
    Dolphin likes this.

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