@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.