She came to a talk I gave about PACE--a small group of maybe a dozen. When she introduced herself she tried to defend "GET" as not all the same. I didn't really understand what she meant until I looked at her study and saw how she was using the term GET, which was definitely not a la PACE.
Yes. That trial is well intentioned I think, and starts off by saying ...
Graded exercise therapy and cognitive behavioural therapy are two management techniques that have consistently helped patients with CFS. However, of the three randomised controlled trials that assessed graded exercise treatment, none accounted for the cyclical nature of symptoms. It is unclear whether the benefits reported reflected the outcome of the treatment, the fluctuating nature of the syndrome, or a combination of both.
That is the only reference to graded exercise
therapy, as a specifically named intervention implying GET, in the whole paper. But it then goes on to say ...
Our aims were:
■ To confirm or refute the outcomes of previous trials that reported physiological and psychological improvements associated with graded exercise in CFS subjects.
■ To determine whether a 12-week program of graded exercise would result in a significant improvement in attentional function in CFS sufferers.
I get the strong feeling, as I think you have already suggested, that the authors seem unaware of "GET" as a specifically named and very specifically defined exercise regime, which at its core disregards and rejects all notions of pacing. GET and pacing are mutually exclusive, so you cannot possibly have a treatment arm of GET-with-pacing! Which clearly shows that the therapy applied in this trial was not GET, even though the introduction seems to suggest the trial's aim is to vindicate (or not) "graded exercise", which the authors clearly conflate with GET.
It seems they did a useful trial, and maybe demonstrated that pacing up to, but at least just within, a patient's sane limits could be helpful for some, and that this form of treatment - by definition - was not GET, but their own form of symptom-sensitive graded exercise. Not at all appreciating that GET, which they seemed to be aspiring to retest, is not in the least bit symptom-sensitive, but actively requires insensitivity to, and riding rough shod through, patient's symptoms. To the uninitiated the difference might seem trivial, but it is actually massively important. The difference between a pilot being sensitive to how close an aircraft is to its stalling point, and thereby remaining airborne, or insensitive to it, and stalling out of the sky; it can be a very fine difference. So many people just don't seem to "get" it.
It's extremely worrying when scientists work to reproduce the validity of a treatment that is not the treatment they actually think it to be. They do all the clever stuff, and hard work, without double checking the most elementary of their assumptions. And then others accepting at face value the validity of their findings.
