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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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CBT found not to increase activity levels in 3 Dutch CFS studies

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 8, 2010.

  1. Dolphin

    Dolphin Senior Member

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    Here is a comment Tate Mitchell posted when posting it on Co-Cure:



     
  2. Dolphin

    Dolphin Senior Member

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    The actometer data and a few extracts:


    The three studies were:
    ================

    The approaches were all based on CBT manual:
    =================

    =========================
    ==============================

    =========
    Information on the outcome measures/instruments:

    [TK: My guess is the Actometer score for healthy adolescents (relevant
    for Stulemeijer et al. (2005) study) would be higher than 91 (25)m
    which was calculated from adult controls as I recall]

    =========
    ========
    [Tom: My chief observation is most people would believe that actometer data
    is more objective than outcome measures from questionnaires like fatigue
    scores. And as they shown, CBT wasn't increasing activity levels. These
    studies reported improvements in the SF-36 physical functioning subscale,
    while again many people might be more impressed by improvements in actual
    physical functioning (as measure by a pedometer) not a change in how people
    respond to questionnaires!]
     
  3. Dolphin

    Dolphin Senior Member

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    As one person on another list I'm on said:
     
    WillowJ likes this.
  4. Mithriel

    Mithriel Senior Member

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    Does this mean that actometer data was taken but it was left out of the published papers or does is it asking why it isn't done in all trials if it can be done in a few?

    I do feel that "CBT and GET are very effective treatments for CFS" is one of those myths that are only true because people keep saying it.

    I have never seen these "effective" results in any papers.

    Mithriel
     
  5. Dolphin

    Dolphin Senior Member

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    Yes, that is true. I have checked the papers in recent days. It's shocking.

    Good point.
     
  6. shrewsbury

    shrewsbury member

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    'CBT Proven to NOT Work' or 'CBT Struck Fatal Blow'

    Hi Tom

    I had 3 major reactions to this post:

    1. You do have restrained titles sometimes. Think I might have gone for something more BBCish - "CBT proven to NOT work" or "CBT Sruck Fatal Blow".

    The stated aim of the CBT was to increase physical activity. They say that CBT did not increase physical activity = DEATH BLOW

    2. It seems criminal almost for the 3 studies to have collected actometer data and then to have not included it in their studies.

    Is there a protocol for inquiring as to why they did not include the data? Something that clearly shows any scientist reading the papers that this is a significant problem?

    Wanted to add "and shoddy 'science'?", but realized that might be construed as being inflammatory

    3.Their discussion of the results states (with my bolds and spacing):
    In my layman's opinion - nice clear statement of results

    I am suspicious that they try to bring in other studies that toe the party line and bring in GET as well.

    And the final sentence says that CBT seems to have something to do with changing 'illness-related cognitions' (although that was NOT proven here), MORE THAN?????? it increases physical activity (they have just proven that it DOES NOT increase physical activity) - very bizarre wording

    Fortunately the Results and Conclusion in the abstract are clear:

     
  7. Dolphin

    Dolphin Senior Member

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    You are probably right. I am used to writing to Co-Cure where one is encouraged to be factual so I have just been using the titles of the papers.

    If a mod sees this, I'd be grateful if they changed it to: CBT found not to increase activity levels in 3 Dutch CFS studies (if that's just a little too long, knock off the "CFS" and if necessary "Dutch" also or if necessary just finish after levels)
     
  8. acer2000

    acer2000 Senior Member

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    It seems like if they were testing to see if CBT actually increased functional capacity in CFS patients, v.02 Max and Anaerobic Threshold (basically exercise test data) would have been a better marker than actometer data.
     
  9. Mithriel

    Mithriel Senior Member

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    That would be far too sensible and objective thus far too likely to give the wrong result - proving the disease is physical and their theories are just plain wrong.

    Studies which use actimeters all show the same effect, no extra activity. The strong suspicion is that the data was not published because that was the result, I doubt it would go unpublished if it supported their case.

    It is also the reason why the multimillion pound PACE trial which is due out soon used actimeters for baseline but not for outcome - very scientific.

    Objective results are the best science but is not what is being used in CFS research. If their theories were sound they would not have to manipulate the data in this way.

    Mithriel
     
  10. _Kim_

    _Kim_ Guest

    All done :Retro smile:
     
  11. Dolphin

    Dolphin Senior Member

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    The authors never said that they tested for functional capacity using the actometer data. They said in the studies this was done using questionnaires.
    However, these were CBT programs designed to encourage greater activity. Going for walks and the like are encouraged. But there was no increase in activity (in the Stulemeijer, adolescents, there was a numerical increase over the controls but not in the other two) which means they didn't do what they are supposed to do. Friedberg found that a similar thing in some studies he did and found that people must be giving up other activities to do the walk. While if their functional capacity improved, they most likely wouldn't need to do this - they'd be able to do the walk plus what they were already doing (plus one might expect more given the improved "physical functioning", fatigue and "functional capacity" they reported in questions).

    There can also be problems with using VO2Max, etc.
    (i) People can have set-backs from doing the exercise test itself
    (ii) It might not be a good way of measuring functional capacity in ME/CFS - people with ME/CFS may be able to achieve a result that is not too bad on one test but in reality, they wouldn't be able to do the number of steps a comparable non-ME/CFS case could do across a day. In the same way that some people with ME/CFS can't achieve the same results on a second day of exercise testing. Or other studies that have found exercise abnormalities.
    In the Belgium CFS rehabilitiation clinics, which involved patients doing on average 41 sessions (exercise and CBT) there was neglible difference between the VO2 max scores at the start and at the end. They did find that lots of people didn't do it the second time as they had a bad reaction the first time.
     
  12. Dolphin

    Dolphin Senior Member

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    I think so too.
     
  13. acer2000

    acer2000 Senior Member

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    I agree no measure is perfect, but even if it caused the patients to feel bad doing exercise testing at the beginning and end of the studies - the data is still relevant. The fact that you state the Belgian studies show basically what I was curious about - that CBT didn't increase exercise capacity clearly shows the limitation of CBT as a therapy for actually improving CFS patients.
     
  14. Esther12

    Esther12 Senior Member

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    This all looks really interesting, so I'm just adding a comment to remind myself to look back at this thread when I have more time. Ta.
     
  15. starryeyes

    starryeyes Senior Member

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    Epic Fail! :sofa:



    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  16. Adam

    Adam *****

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    Lol You must be an Equals 3 subscriber on You Tube. Love it.

    PS. In 2001 spent 22 hellish days in Oldchurch Hospital Romford London. 6 CFS beds. A real eye opener that made me stick my head in the sand for nine years until, you've guessed it, XMRV popped up on BBC text one day and my wife said "seen this, a study in US about a virus for CFS" and my world will never be the same again. Death to CBT. My thought processes are no more crazy than the next citizens. And as for GET. I'd love some therapist to try and cross a busy road with me. No love, you go right ahead and cross on your own. You'll be fine. Just wave to the motorists a bit and get them to slow down once the lights have changed to green. I'll stay here. I'm just fine. I don't want to get mashed up by a motor vehicle.
     
  17. Advocate

    Advocate Senior Member

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    Hi Tom,

    I can see that you are interested in ways of measuring fatigue. I hope you will go to the draft of our survey and take a look at the section on "other" tests. What words do you think we should use in asking if people have had VO2Max testing, actometer tests, etc.
     
  18. Dolphin

    Dolphin Senior Member

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    Thanks for asking, Advocate.

    I filled in the questionnaire there. I have to say I like things to be thorough but did find it a bit tiring.

    My point about actometers is with regard to treatment claims - so somebody would need before and after data. Similarly for VO2 max.

    If you collect just one set of numbers, that tells you less. But you could look for correlations e.g. see how well VO2max or actometer scores correlate with symptoms or disability scores.

    One of my objections is when "cause and effect" is read into them e.g. if people exercise, this will solve they're problems. Just because there may be a correlation between a particular outcome measure and disability, doesn't mean the person necessarily "deserves praise" or are at that higher level because they exercised. I functioned at a high level for years (pre-diagnosis) then I got stuck at a low level (probably from late diagnosis and advice to exercise).
    If you had tested my VO2 max level or measured my actometer readings when I was mildly affected, they would have been good. But it doesn't mean that now I can exercise myself up to those levels now.

    Also when I was mildly affected, my VO2 max might have been better than some people in the population but I still had specific problems and would have felt worse than healthy people the next day after the test.
     
  19. Snow Leopard

    Snow Leopard Senior Member

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    Is the data on that published? I assume it would be a DeMeirlier study?
    (I haven't done a revew of related articles so..)
     
  20. Sunshine

    Sunshine Senior Member

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