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Rehabilitation for patients with ME/CFS: time to extent extent the boundaries of this field (Nijs)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 21, 2015.

  1. Dolphin

    Dolphin Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    This doesn't have an abstract.

    It accompanies the Vos-Vromans et al. paper:
    This trial used a team of professionals rather than single individuals that are used in CBT, GET, etc. usually. It praises this approach.

    It refers to CBT and GET being the only evidence-based therapies a few times.
     
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  3. Dolphin

    Dolphin Senior Member

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    It does say the following about the Vos-Vromans et al. (2015) study. The same points could be made about many studies in the ME/CFS field:

    Note that there was one objective measure, an activity monitor: at 52 weeks, the MRT group had increased by 5.8% and CBT group had increased by 6.6% compared to baseline (there was no control group).
     
  4. Effi

    Effi Senior Member

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    @Dolphin There's no abstract of the article yet, but while searching for it I stumbled upon the brochure of Nijs' research group's new rehabilitation program so I thought I'd post a little info about it so we have something to compare Vos and Vromans approach with. [Spoiler alert: don't get excited.] They are part of an international research group 'studying pain and body movement' (fm/cfs, whiplash, lower back pain, post cancer pain, etc.) - website here. The information about their rehabilitation program is only in Dutch (here), but the gist of it is:

    - rehabilitation is key in treatment of fm/cfs, but not the only necessary treatment. They say exercise therapy perfectly complements medical treatment, also claiming medical treatment could work less or NOT WORK AT ALL if not accompanied by exercise therapy.

    - Their approach is phased, i.e. phase I (stabilisation) and II (graded exercise).
    Phase I consists of teaching the patient how to move/sleep/breathe/cope with stress in a more responsible/correct way. Patients own views on illness are also being corrected. Patients are taught about pacing. For some patients phase I could also include things like manual therapy, for specific pain management. They claim this all leads to stabilisation of the illness. Stabilisation of illness is a necessary basis to gradually increase activity.
    Phase II consists of graded exercise and/or graded activity. This will lead to better overall functioning.

    - a few sidenotes:
    * no more 'harsh' (their words!) graded exercise therapy, but something called 'flexible & humane graded exercise' (apparently invented in Australia at UWA). Also the fluctuating nature of the illness is taken into account.

    * at the beginning of each phase patients set short and long term goals for themselves. They expect the goals to change as patients enter phase II (i.e. they expect patients to set more realistic goals after the lessons learned in phase I).

    * They mention immune dysfunction and hpa-axis dysfunction as an explanation for exercise intolerance. But not exercising is out of the question for them, as this would (further) deteriorate basic bodily functioning (heart, pulmonary functioning, brain, etc.).

    * The ending of the brochure is pretty radical. It states things like: Rehabilitation is always indispensable in the treatment of fm/cfs, no matter the approach (rheumatological, psychological, psychiatric, biomedical or biopsychosocial). There is nothing that speaks against it (i.e. side effects), there are only pros, even though this treatment is not curative.

    One good thing I noticed is that they actually mention a few times that this illness is very serious. (orly?)

    It's all ok in theory, but I strongly doubt this will give them a much better outcome than the classic GET they used to propagate just as passionately. They still think patients are clueless - saying patients are incapable of informing themselves, cause pretty much all info online is useless and 'solely based on the well-meant emotional utterings of fellow patients' (wow). In their view patients are incapable of learning how to pace by themselves, as they are unwilling to see the push-crash cycle they are stuck in. The focus is still on gradually increasing activity, although they slightly lowered their expectations as to which level of activity is achievable. There is no place whatsoever for failure of the treatment. No mentioning at all of what to do if it doesn't work. Aka business as usual.
     
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  5. SOC

    SOC Senior Member

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    :rofl::rofl::rofl:

    :bang-head::bang-head::bang-head:

    Who gets to define "humane" in this case, the tortured patients or those with a professional investment in this treatment?

    :mad: ****ing paternalistic egotistical blankety-blanks. So they know better than any patient what is best for the patient? On what do they base this outrageous idea? The fact that they know they are smarter than the rest of us, so no evidence is necessary? Our belief system is everything, science is unnecessary. I wonder what they've named the god at the core of this belief system.

    I no longer take this kind of statement as "good" anymore. People with these philosophies believe in lying to and playing word- and mind-games with patients "for their own good." They want us, and the unaware public, to think they are taking us seriously so they're not dismissed out-of-hand as they should be. If pressed, some of these people (at least) have made clear that they mean "psychological illnesses are very serious" not "this is a serious physiological illness." One big clue -- what serious biomedical treatments are they offering for this "very serious" illness?
     
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  6. Effi

    Effi Senior Member

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    @SOC I feel your frustration. These so called new approaches smell like yesterday's dinner warmed up and served on a slightly shinier plate. But it still leaves the same foul taste in your mouth as it did yesterday. yuk. :vomit:
    Apparently the biomedical treatments are to be received 'elsewhere' (not further specified). Basically they don't care what you do, unless you don't do it their way. That's when they start caring. :moneybag:
     
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  7. alkt

    alkt Senior Member

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    same old same control freakery . they think we are all so stupid.they are just trying to justify their salaries unfortunately many people in high political office are also to dim to know the phsycobabblers approach will not work with any physical illness . ps isn't rehabilitation what they use on deviant/criminals. what happened to medical treatments or therapies or is their wording designed to stigmatise pwme further.
     
  8. SOC

    SOC Senior Member

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    "Here I was looking for evidence and all I had to do was make things up!" Beckett on Castle
     
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  9. Sean

    Sean Senior Member

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    May? MUST.

    This paper is just part of the face-saving backdown currently underway, by redefinition-ism.
     
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  10. A.B.

    A.B. Senior Member

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    The title sounded promising but it's pretty much the same old stuff. There is one positive aspect though: medical treatment is no longer forbidden. That's progress from the Wessely school where medical treatment is claimed to make the imaginary illness worse. As Sean says, we're witnessing the psychobabblers repositioning themselves. Are they feeling the pressure from the IOM report and Rituximax research?

    PS: I find the notion of explaining the illness to patients especially funny since one thing researchers can agree on is that we don't actually understand the illness.
     
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  11. Sean

    Sean Senior Member

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    Bingo!

    It is absurd, offensive, and dangerous, all at the same time. :rolleyes:
     
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  12. SOC

    SOC Senior Member

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    Ah, but they do understand the illness. They don't need science and evidence to back up their beliefs. They understand the nature of the illness and clearly we don't, which is why they feel they have to explain it to us. :rolleyes: If we'd just give up our non-constructive insistence on objective scientific evidence and simply accept their belief about this illness, their lives would be so much easier (and more lucrative).
     
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  13. Dolphin

    Dolphin Senior Member

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    That's interesting. The Wallman et al. approach is a bit different from the White approach. The Wallman et al. approach means patients can do less exercise or even no exercise if they're feeling bad.
     
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  14. Sean

    Sean Senior Member

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    Evidence, schmevidence. Bah.

    We have a theory!
     
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