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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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'The relatively objective'...?The semi-objective 6 minute walking test...
Any such results would have been pushed out front and centre. They are very conspicuous in their absence.Other objective measures taken during the trial, such as fitness levels and employment hours, have not yet been published but it would be safe to assume we would have heard about them already if they were impressive.
That was the best result from the 'objective' measures. Says it all.The reason that dismal 6MWD scores were even included in the Lancet paper was probably because something objective sounding needed to go in there to help avoid criticism, even if it only showed a very minimal advantage for GET and none whatsoever for CBT.
This point needs to be repeated loudly until the relevant ears bleed.and the [6WMD] scores were on par with serious medical diseases and an increased risk of death.
Is the man desperate, thick skinned, short of ideas - GETSET - catchy phrase.
The six minute walking test has been discredited on basic science, at least for ME, since about 2006, and every year the case against such simplistic tests keeps mounting. The exercise physiology findings do that. While in nearly all cases any exercise test is repeatable, it is an established finding that tests with us are not repeatable. That lack of repeatability due to a physiologically proven crash in the aerobic capacity is very strong evidence that the six minute walking test is a very bad measure to use for ME. An actometer at least measures our capacity over time. Bye, Alex
Which research do you have in mind? I'm not sure I've seen any studies that correspond in intensity to a 6MWT, though I do agree that a more useful test of capability would involve repeatability over time and measures of PEM.The six minute walking test has been discredited on basic science, at least for ME, since about 2006, and every year the case against such simplistic tests keeps mounting. The exercise physiology findings do that. While in nearly all cases any exercise test is repeatable, it is an established finding that tests with us are not repeatable. That lack of repeatability due to a physiologically proven crash in the aerobic capacity is very strong evidence that the six minute walking test is a very bad measure to use for ME. An actometer at least measures our capacity over time. Bye, Alex
Peter White is acutely aware of these statistics - he quotes that 2010 Action for ME survey saying 75% of patients were happy with their treatments, in fact, a close look at that statistic, shows around 70% rated their experience as very poor, to poor, to best given no other treatment..