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Cochrane Review protocol: Exercise therapy for chronic fatigue syndrome (individual patient data)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Apr 6, 2014.

  1. Valentijn

    Valentijn Activity Level: 3

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    Karen Wallman also looks rather problematic. She approaches CFS from the perspective of an exercise physiologist, but is quite happy to use psychological and psychosomatic explanations. She's run some GET trials directly, and a lot of exercise testing.

    Trial of GET in CFS: https://www.mja.com.au/journal/2004...rial-graded-exercise-chronic-fatigue-syndrome
    How to use GET without exacerbation of symptoms: http://www.ingentaconnect.com/content/mjl/sreh/2008/00000040/00000004/art00001
    All studies show GET is effective in improving physical function: https://www.mja.com.au/system/files/issues/183_03_010805/wal10079_fm.pdf
    Lower output in submaximal exercise testing is due to misperception of effort and exercise avoidance: http://128.121.104.17/cfs-inform/Exercise/wallman.etal.04.pdf
    Pacing can be used to manage CFS and avoid PEM (with Ellen Goudsmit, Jo Nijs, and Leonard Jason) http://informahealthcare.com/doi/abs/10.3109/09638288.2011.635746

    Her stance is a little odd in that she acknowledges immune dysfunction in one paper, and the necessity to take that into account in the GET regime. Some of her recommendations for GET more closely resemble pacing, and she was the last author listed in a pro-pacing article. But she's also willing to bury negative results (no increase in physical activity compared to controls) while making a big deal out of less relevant physical measurements.

    Either she has a very complicated viewpoint, or it's been evolving. But she's very pro-GET in any event.
     
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  2. Valentijn

    Valentijn Activity Level: 3

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    Rona Moss-Morris is a very entrenched member of the BPS school, and very enthusiastic about false illness beliefs and psychosomatic explanations for unexplained diseases. Most of her stuff regarding CFS is strictly in the psychological realm, but there is at least one GET trial she was the author of, and a lot of opinions about our psychiatric problems in relation to exercise.

    Trial of GET: http://hpq.sagepub.com/content/10/2/245.short
    Review of GET: http://onlinelibrary.wiley.com/doi/10.1111/j.1468-2850.2011.01262.x/abstract

    She uses a lot of spin to hide the ineffectiveness of GET when objective measurements show no improvement, by saying that increase in activity doesn't mediate the "effectiveness" of GET.
     
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  3. Sean

    Sean Senior Member

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    White, Sharpe, and Chalder, plus Wearden, Glasziou, Moss-Morris, and probably Wallman. So far that makes 7 out of 11 reviewers with at least a significant (and typically a massive) vested interest in a particular outcome.

    Plus using a criteria based on the Oxford version, the one created by some of the reviewers, and only used and advocated by them.

    The more I think about this the angrier I get. They have crossed way over the line this time, this is one the most blatant stacks and conflicts of interest I have ever seen. A genuine scientific scandal.

    What the hell were Cochrane thinking?

    Time to stop calling it mere 'spin'. It is shamelessly Orwellian lies, deliberately designed to deceive, and divert from the truth.
     
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  4. Valentijn

    Valentijn Activity Level: 3

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    Marianne Holth Dybwad is a rehab physiotherapist. Her only involvement in CFS research seems to have been in her PhD thesis:

    English starts on page 33: https://www.duo.uio.no/bitstream/handle/10852/28506/MasterDybwad.pdf?sequence=1

    Basically she accepts without criticism the claims that GET is effective in other studies. And in her own thesis, she relies on psychological explanations for (barely) increased performance in the (small) group treated with Qigong. She probably doesn't have an entrenched view yet, but it seems like she would be happy to follow along with those who do have entrenched views.

    That was in 2007, and I can't find any more recent data.
     
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  5. Gijs

    Gijs Senior Member

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    In this review there is selection bias and there is no objective evidence that GET will make CV(s)/ME patiënts better. I don't see any study showing that the V02max is significant increased after a GET intervention. So this is no objective science. They completely ignore all data of patiënts who said GET makes them feel more worse. It is bla bla bla.... bias of people who are mentally ill themselves and delusional like Sigmond Freud was.
     
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  6. Valentijn

    Valentijn Activity Level: 3

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    I'd say Wallman is 100% in the GET camp, not "probably". She's more moderate regarding possible pathological involvement and responding to symptoms, but is still a very strong advocate of GET.
     
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  7. Sean

    Sean Senior Member

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    9 out of 11 supporting GET, with almost all of them known to be hardcore supporters of the primary somatisation model, a model developed by themselves and for which they have strongly advocated over a long time.

    2 unknown.

    Wish I could get odds like that.
     
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  8. A.B.

    A.B. Senior Member

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    What could be done to combat this latest attempt to legitimize pseudoscience? Could Cochrance be convinced that GET studies are flawed and that the reviewers are intentionally avoiding objective measurements of physical impairment?
     
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  9. alex3619

    alex3619 Senior Member

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    They have an issue, probably many issues, but I do not think they are delusional. A cultist, brainwashed by a cult, is not delusional, they have a strong aberrant belief system that is out of step with reality. They could grasp reality, but what they believe stops them - there is no underlying pathology.

    Yet there is at least some evidence that at least some of them are well aware of the issues, and are deliberately avoiding letting them be discussed. There might be some offhand comments in the paper on the real issues, probably dismissive, but I am also watchful that suddenly their story may change. Psychobabble survives by constantly changing, its a moving target, and even though the old psychobabble is always discredited, the new one claims it isn't.

    This review should be highly entertaining, suitable for the fiction section, although it would have to be labelled dark fantasy and kept away from children. (This last statement was me wearing my political hat, not scientific hat.)
     
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  10. alex3619

    alex3619 Senior Member

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    I wonder the same thing. It is one of the subgoals of the research I am doing.
     
  11. Valentijn

    Valentijn Activity Level: 3

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    There are two relevant studies by Kjetil G Brurberg & Lillebeth Larun:

    No side effects from GET, PACE shows that GET is effective for patients regardless of diagnostic criteria: http://bmjopen.bmj.com/content/4/2/e003973.full
    GET is likely to be effective for CFS patients: http://hera.helsebiblioteket.no/hera/bitstream/10143/199731/1/NOKCnotat_Larun2011.pdf

    And a few more by Lillebeth Larun, without Kjetil Brurberg:

    Exercise programs: http://www.sciencedirect.com/science/article/pii/S0738399110003204
    Research shows GET is beneficial: http://europepmc.org/abstract/MED/21304571

    The ones involving Brurberg seem especially focused on fatigue, and somewhat disdainful and dismissive of the possible relevance of PEM. Larun's other papers are still very GET focused, but incorporate flexibility into GET, and acknowledge PEM as a factor to consider.

    They're a bit hard to pin down, and it seems very deliberate. Even when pretty firmly advocating GET, they leave a bit of wiggle room, putting the responsibility on other research which advocates GET. Laren also doesn't come right out and say it, but it is strongly implied that a lot of the problem is down to patient motivation or psychology, since CFS patients will presumably do better with "enjoyable" exercise activities.

    So that's another two pretty firmly in the GET camp, though they've never buried themselves so deeply that they can't dig their way out if they absolutely need to. But as long as they have any excuse to support GET, they'll continue to do so.
     
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  12. Valentijn

    Valentijn Activity Level: 3

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    I can't find anything from Jan Odgaard-Jensen regarding ME/CFS or focused on exercise. It looks like he gets involved in a lot of different types of research, and some stuff regarding Cochrane itself. So he might be the resident expert on doing a Cochrane review.
     
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  13. Cheshire

    Cheshire Senior Member

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    Valentijn wrote:
    How can biopsychosocial defenders say that our symptoms are medically unexplained (i.e. unxeplainable for them) and at the same time say that there "is evidence that exercice can exacerbate symptoms"???
     
  14. Valentijn

    Valentijn Activity Level: 3

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    So that adds up to 9 out of the 11 Cochrane reviewers being strong proponents of GET before this thing even gets started. That leaves 1 seemingly unbiased participant and 1 who is uncritically accepting GET claims.
     
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  15. Valentijn

    Valentijn Activity Level: 3

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    They do it by dismissing the contrary evidence. Basically "patients complain about this, but the research says otherwise, ergo the patients are wrong." It doesn't matter how flimsy or spun or cherry-picked the research is - it wins, as far as they're concerned.
     
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  16. Cheshire

    Cheshire Senior Member

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    Yes they use data when they fit with their theory and deny them when embarrassing for their model.

    Great job Valentijn! Thanks
     
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  17. Dolphin

    Dolphin Senior Member

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    What does that refer to?
     
  18. Dolphin

    Dolphin Senior Member

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    Here's a link to some comments of mine on a paper Larun co-wrote:
    http://forums.phoenixrising.me/inde...alance-of-physical-activity.4863/#post-106111

    She's a physiotherapist (very often they're inclined to see exercise as the answer).
     
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  19. Valentijn

    Valentijn Activity Level: 3

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    https://www.mja.com.au/journal/2004...rial-graded-exercise-chronic-fatigue-syndrome
     
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  20. medfeb

    medfeb Senior Member

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    That's what struck me too. THey also said
    "We will include trials which include patients with disorders other than CFS as long as more than 90% of the patients had a primary CFS diagnosis according to the criteria above."

    This will result in a meaningless patient cohort - you have no idea what's wrong with these patients beyond fatigue.
     
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