In the PACE Trial. GET was delivered based on a manual. So as it was a Trial each person was supposedly getting the same approach delivered to them. I think Bob's point earlier is a valid one. In the real world, a patient might receive a therapy he/she or the therapist terms Graded Exercise, or Pacing, or Graded Activity, or something else, or a combination of several approaches. It can be hard to know for sure in any survey if all participants have received the same approach, and delivered in the same way.
There are several differences of opinion over exactly what Pacing itself should entail. I personally think Pacing is similar to Graded Activity Management - an approach I had delivered at an ME clinic on a group course when I was fluctuating between moderate and severe. The actual 'exercise' you did or did not include in your activities was very much down to you as an individual and based on your ability at any given time, but also on what you needed or had to do in your own life. It tried to help you better organise things so as to accomplish the tasks/activities you really neeeded to accomplish - be it brushing your teeth, getting dressed, going for a walk, taking care of the kids, or working. Trying to learn how to live more effectively with your limitations - pushing other non-essential things aside, delegating, bringing in help, appropriate periods for rest etc. etc. Really taking a look at your weekly routines, getting back to basics and then over time, setting realistic goals to try and achive more in areas you needed or wanted to. But all the time being aware that setbacks and relapses could and would occur - then thinking how best to manage them etc.
I think there are at least two driving points behind all these management strategies:
One - the need to accept that your abilities have been drastically altered and you need to accommodate a reduced capacity for activity (to lessen the impact of 'boom and bust' or blindly pushing on through and suffering the consequences). That in itself for me was a necessary wake-up call and I only really accepted it when I met with an immunologist specialising in ME. Prior to that I simply would not accept things. Had an appropriate intervention been available to be in the early years I might have spared myself a great deal of stress and pain and even shortened the time between relapse and remission. It wasn't the case that I could always 'push through' by any means, but when I was for long periods confined to bed - I would lie there not really accepting my ME and feeling guilty and running myself down all the time. For me, I needed that 'slap in the face', that 'wake-up call', that 'official confirmation' that my life had changed and I needed to adapt.
Two - I think we have accepted that where possible it is necessary to try and improve our mobility in order that we don't fall into the deconditioning trap, or so that we can try and prevent further complications arising from being largely immobile. There is a tendency - at times and for me - when I am struggling, to not do anything at all. At times doing nothing is all I can do - but I think you do learn the hard way, that some things are possible. And I have certainly overcome some of my issues by slowly building up 'exposure' once again. It is hard and it is not a straight road by any means, but for me, things like sensitivities to light and noise, and 'exercise' intolerance, have been slowly overcome. Not entirely, and I can't prevent setbacks but I can now accommodate them. I don't believe this takes anything away from the fact of having a 'neurological' or 'immune' disease. But I do think that if I had been helped earlier to learn how to better manage and to slowly and carefully try and do more, once I had accepted things had changed, I would not have suffered for as long on my own.
Edited.
