Tilly
Senior Member (Voting Rights)
He now has a facebook page and is promoting Kings College it's in his blog https://my-me.blog/ you can follow his journey. That will be fun
one of his blogs:He now has a facebook page and is promoting Kings College it's in his blog https://my-me.blog/ you can follow his journey. That will be fun
The vicious cycle of fatigue
[*]You feel awful, fatigued, muscle pain, headaches etc. So you naturally rest and reduce your activity in an attempt to get better. This can result in deconditioning, loss of fitness and muscle strength, which in turn results in a further reduction of activity – which increases symptoms when you try to be active – which means further reduction of activity = feeling of frustrating – you get the picture!
one of his blogs:
pure BPS PACE stuff.
one of his blogs:
pure BPS PACE stuff.
I suppose if you believe King's previously 'cured' you, and are about to cure you again, you will accept at face value their explanations and rationales. It is a normal response to accept what these highly educated professionals are telling you, especially if it seems to accord with your experience and world view. (It seems from supportive comments on Facebook forums from his family's connections that he is part of a world that is not only interested in sport, but is involved in a social life linked to sports clubs.)
Also if you are being encouraged by King's to 'go out and save the world', it must be very flattering.
Let's hope he does not suffer too much if second time round GET is not the 'cure' he is expecting. It is an especially worrying possibility that this public commitment to a potentially harmful treatment may put him more at risk of doing 'too much', more at risk of harm.
The sad part is he's not going to recover using their programme...
If this young man does have ME and worsens with GET, it isn't likely the public will hear about this.
I wonder how structured the PR will be about this. How involved is the College with media outreach on the project?
Was this fellow carefully selected for this media promotion? Is money exchanging hands? Does this fellow meet the CCC, or the ME-ICC criteria?
It would also be interested to get an idea of what in real life people understand by GET, both the clinicians providing it and the patients experiencing it.
Recently I was reading a thread on a UK Facebook support group, where several people commented on how GET helped them. It seemed that those commenting were not then still receiving the intervention but did have ongoing symptoms. One comment, which I possibly am now inaccurately paraphrasing, said something along the lines of 'when I am going through a bad patch I use a few days of GET to get me back on track'. The next commentor seems to be saying they used GET in a similar way. So whatever this is, it certainly is not PACE GET. I assume this is some form of establishing a stable activity baseline or activity management. In effect getting yourself to step back from the maelstrom of daily life and working out where your current energy envelope or limit is.
In the past I have also read informal descriptions of GET that sounds more like some form pacing with occassional gentle pushing at the limits of the envelope to know where the activity ceiling currently stands.
The first stages of GET, establishing a stable baseline with activity levels within the threshold of triggering PEM/crashes are not necessarily different to some approaches to pacing or spoon theory. For most of us the problems with formal GET come with the increasing of activity/exercise in arbitrary increments beyond envelope limit with deliberate instructions to ignore or deny any adverse reactions.
Presumably a sensitive practitioner providing GET will, perhaps unconsciously, modify it to avoid or minimise the negative consequences of doing 'too much'. So with anecdotal commendations of GET, can we be sure what they are commending.
I have noticed similar threads in relation to sleep issues, where people have taken from their OTs advice, the need to establish a very rigid clock ruled daily schedule, going to bed at exactly the same time everyday, getting up at the same time every day and undertaking daily activities at the same time for the same amount of time everyday. The posts I have come across are usually people who blame current sleep issues on having veered off their rigid schedule and seek to use reestablishing the schedule as management/treatment for their sleep issues. Is this really a sleep hygiene strategy or is it an indirect way of keeping daily activity levels within an individual's energy threshold?
Presumably most of us have the belief that relapses and remissions happen or don't happen spontaneously according to the nature of the individual's underlying condition or for external reasons we do not yet understand. We further have, with some evidence, albeit not fully conclusive evidence, the belief that for everyone with ME over exertion exacerbates our condition in the short term and in the longer term triggers relapses. Beyond this I suspect a fair number of us also speculate with a weaker evidence base that over exertion interferes with any spontaneous recovery that might for some people be happening. If this is the case then there are very specific circumstances where PACE type GET may actually facilitate recovery.
If the patient is experiencing spontaneous recovery and GET is undertaken in such a way as to manage total daily activity as well as just the exercise periods, and if the arbitrary increases in activity imposed are within the concurrent levels of spontaneous recovery, this may have the unintended consequence of preventing over exertion that would block the spontaneous recovery. In this situation, by luck rather than good management, ignoring the negative effects of exercise is irrelevant as there should not be any.
Presumably any spontaneous recovery is more likely to occur in the earlier stages of the condition, and is also believed to be more likely with young people. The author of this article when previously using GET was a teenager without the need to worry about some of the complexities of daily life (ie preparing meals, shopping, etc) so with a supportive education regime may have been able to incorporate his whole daily routine into the GET programme. So under this explanation, GET did not cause his recovery, but it did facilitate it; GET had the unintended side effect of stopping over exertion arising from the uncontrolled vicisitudes of daily life.
Group studies do not provide reasonable support for the efficacy of GET as a treatment for ME, despite the beliefs of a number of researchers, but could it be that for some of those individuals that believe it 'cured' their ME/CFS, that they did have ME/CFS as we understand it and that their experience of GET, 'as much by good luck as good management', facilitated their spontaneous recovery.
Most of these evangelists with a 'cure' to sell, have an experience of 'recovery' associated with their 'cure'. It is human nature to seek causal connections, and it could be that in the right circumstances such as diet modification or GET had a facilitating effect that reinforces the individual's mistaken belief that there was a causal relation. Unfortunately seeking to replicate this in other circumstances is likely to result in disillusionment or even harm.