Jonathan Edwards
Senior Member (Voting Rights)
This may be me restating the obvious but I am trying to get my head around the issue of deterioration following GET.
If the studies collected by Larun and Vink are taken as showing evidence of efficacy of GET then the reasoning seems to be this:
Physiological illness in ME is perpetuated by a attitude of mind that prevents return to health and this attitude can be improved by GET - as indicated by reports of a more positive attitude to health status. This improvement cannot just be reversal of deconditioning because deconditioning of its own does not produce ME symptoms, although if people with ME are to some extent deconditioned one might expect to see objective reversal of this with GET (I think there is in one study). The studies do not show objective evidence of reduction in disability so improvement in attitude to health status is taken as a valid index of improved physiology.
But if it is accepted that GET can make a physiological change, and attitude to health status is a reliable index of this then it has to be accepted that GET may be followed by a genuine adverse physiological change. Any deterioration in 'attitude to health status' must be taken equally seriously as an index of worsening physiology. If accounts of worsening are to be dismissed as merely a perverse attitude change then there is just as much reason to dismiss the positive attitude changes measured in the studies as not reflecting genuine physiological improvement. You cannot have it both ways.
And if we look at the reports of attitude changes the negative ones are much more plausible than the positive ones. The reports of improvements in trials are very consistent with the sort of positive reporting bias characteristic of trials. But the reports of deterioration often take the form of a person willingly taking part in a treatment hoping to improve on it and then finding instead that they are much worse. The clear impression is that the BPS view is right in that exertion can genuinely impact physiology long term (and who knows maybe they are right that it is the mental exertion that is crucial) but that that can be in a seriously adverse way.
Or to put it simply; if the studies are taken as valid evidence of improvement the reports of serious deterioration must be considered equally valid by the same theory.
If the studies collected by Larun and Vink are taken as showing evidence of efficacy of GET then the reasoning seems to be this:
Physiological illness in ME is perpetuated by a attitude of mind that prevents return to health and this attitude can be improved by GET - as indicated by reports of a more positive attitude to health status. This improvement cannot just be reversal of deconditioning because deconditioning of its own does not produce ME symptoms, although if people with ME are to some extent deconditioned one might expect to see objective reversal of this with GET (I think there is in one study). The studies do not show objective evidence of reduction in disability so improvement in attitude to health status is taken as a valid index of improved physiology.
But if it is accepted that GET can make a physiological change, and attitude to health status is a reliable index of this then it has to be accepted that GET may be followed by a genuine adverse physiological change. Any deterioration in 'attitude to health status' must be taken equally seriously as an index of worsening physiology. If accounts of worsening are to be dismissed as merely a perverse attitude change then there is just as much reason to dismiss the positive attitude changes measured in the studies as not reflecting genuine physiological improvement. You cannot have it both ways.
And if we look at the reports of attitude changes the negative ones are much more plausible than the positive ones. The reports of improvements in trials are very consistent with the sort of positive reporting bias characteristic of trials. But the reports of deterioration often take the form of a person willingly taking part in a treatment hoping to improve on it and then finding instead that they are much worse. The clear impression is that the BPS view is right in that exertion can genuinely impact physiology long term (and who knows maybe they are right that it is the mental exertion that is crucial) but that that can be in a seriously adverse way.
Or to put it simply; if the studies are taken as valid evidence of improvement the reports of serious deterioration must be considered equally valid by the same theory.