Aye, that shouldn't even be an issue, clearly it is. I suppose where "maladaptation" comes in is where the response is deemed less/un- justified
It's better to assume that people are making sensible decisions and try to figure out what is going on with them, rather then fret about why they are not being sensible. I don't think it is justifiable to decide other's people's behaviour or attitudes are "deemed less/un- justified" this case.
Absolutely agree, tackling such fears is best approached as part of a joined up strategy that actually delivers on the promise of proving that certain fears (obviously not all fears) in this regard are unnecessary
we don't agree on this point. I said not to bother about any fear/concern itself, which will resolve
on own as condition improves (or might be misunderstood anyway). You are assuming there is a significant percentage of people who have maladaptive fears, while I think there is not.
I avoid staircases. This is reasonable because I get worse if I use staircases. It does not prevent me from using them if absolutely necessary, but it does route me to the elevator if available (which is adaptive, as it saves my energy for more necessary things), and I avoid certain places. However I monitor what I am able to do continuously (being this limited is not cool). If I become able to use staircases, I will know.
When we fully understand the illnesses noted I will be happy to fully agree/disagree
there are many illnesses in the world which are not fully understood. Cancer, multiple sclerosis, Lupus, Rheumatoid Arthritis, Ehlers-Danlos Syndrome, motor neurone disease, Alzheimer's, need I go on?
However there are some things we do have pretty good indications about in ME/CFS. Things that relate to PER: Muscle power is reduced with use and it doesn't return at a normal rate. Cardiopulmonary function drops after exertion (possibly due to an immune reaction similar to the one causing joint pain in Ehlers-Danlos Syndrome). There could be bioenergenic muscle abnormalities in both skeletal and smooth muscle.
Please read:
http://www.ncbi.nlm.nih.gov/pubmed/21615807
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
http://www.cfids.org/cfidslink/2010/pem-series.asp
As it stands, I can conceive of conditions in which activity, particularly certain types, is reasonably well tolerated and it is my sense that this tolerance often grows in relation to recovery, not just because of anecdotal evidence to support this notion but also what I see in the PWME I know (one or two have been down at 40%/50% and are now able to make it to support group meetings on foot/by bike etc without significant PENE)
I myself have recovered/maintained relatively normal levels of (sustained/tolerable) physical activity in the past (although admittedly I didn't manage my lifestyle very diligently and alcohol/diet/NSAIDS/poor sleep discipline/overdoing it in terms of work/posture and late nights/viral infection eventually got the better of me!)
ME/CFS is not less disabling than other conditions like multiple sclerosis and heart failure.
see:
http://www.ncbi.nlm.nih.gov/pubmed/8873490
http://www.co-cure.org/schopflocher/AISH2B.htm (40-60 on SF-36 may represent the moderate/mild population able to get to the doctor)
I am not sure how the point about activity changes supports your view. It is well-known that ME/CFS is often relapsing/ remitting. Even with the few who are overall improvers or getting progressively worse, it's probably still a fluctuating course.
This tends instead to support our view: PWME do more when they can do more.
WillowJ said: Trying to correct their fear (whether or not they have a genuine emotional fear) of activity is dangerous
John said: Agreed, unless/until you address the underlying issues
In context, I was talking about where people (with any disease) are relapsing due to activity, so there is no "unless" part here. It is dangerous. That is all.
You have recovered to some extent and I do not know if you fully appreciate that many people are having relapses/PER just from trying to do very basic activities of daily living like eating/ basic easy meal prep (and for some just eating what others make for them), moving from bed to a chair (for some just sitting up or less), washing, toileting, and so forth.
If people weren't having relapses, they wouldn't be having concerns about what they could do. Thus, no need to correct their thinking. People are very unlikely to be stopping themselves from doing something that won't be giving payback, but much more likely to be
trying to do more than they should. It's far more likely that people will need advice on pacing.
WillowJ said: This concern/fear about activity which is relapsing them is appropriate
John said: Agreed
(John's bolding, Willow's underlining)
since you agree to that, you should have no problem accepting that there is no need for therapy for this
appropriate concern/fear about activity which is causing relapses/PEM.