Discussion in 'Lifestyle Management' started by Andy, Oct 15, 2020.
I've finally managed to finish watching these a little bit at a time. What they describe is the closest to my disease I have come across. The suggestions are practical and many match the things I have learned through trial and error over the years.
I wish I had been told them when I was first ill.
They keep saying that CBT and GET are the only management strategies available so it is them or nothing, but this alternative of managing your energy needs so you can keep as well as possible could easily be taught by a GP or physio.
Slide used in the video, also available here: https://workwellfoundation.org/wp-content/uploads/2020/03/WW-PEM-Timecourse.pdf
We've discussed this somewhere before - that I can't locate now - and seeing it again I'm still puzzled by it. I understood the presentation to mean the different types of PEM occur in a linear timeline, one after the other. This doesn't match my experience.
1) While I agree that immediate symptoms are different from the later ones I frequently skip the immediate stage altogether - but still get all the symptoms of the later stages.
2) I get the combined sets of symptoms from the short- and the long-term PEM together, from the get go (i.e. from the day after overexertion). If anything, flu-like symptoms, supposedly part of the long-term PEM symptom complex, are the earliest ones I notice.
So am I misunderstanding something about Workwell's division of PEM into stages?
Or does their division reflect milder ME and my experience reflects more severe ME?
I hope to look at these videos but I see they are quite long.
I appreciate that the team seems sympathetic, but do we have any reason to think that they have any more evidence for their theories and recommendations than anyone else?
Maybe they are relaying the practical experience of patients and maybe that makes sense as a policy in the absence of a proven theoretical base, but there seems to be a lot of reference to theory here.
My PEM doesn't fit well with this timecourse. It's not linear and predictable. It also usually doesn't last 7 days.
The kind of diagram needed to explain PEM dynamics would look more like a markov chain which is used to visualize the probability of transitioning between different states.
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