Thursday, 24 May 2012

Post Exertional Malaise and research

A strange week really, my limbs have felt heavy all week.  The one minute marching that I have to do 4 times a day as part of my Perrin treatment feels like hard going.  However, despite this I "feel" well.  I feel good.  On Monday I actually did a bit of digging in the garden.  I helped a friend move a rhubarb plant (although not really sure how much help I was) and then later I dug enough to cover two short rows of potatoes in soil.  I know for sure that an attempt at this sort of exercise last Spring would have induced an instant "crash".  By crash I mean an immediate onset of symptoms making you have to stop what you are doing.  For me this would take the form of a feeling of increased gravity, like the sky was pushing down on you.  My muscles would feel weak, especially my thighs, like it's just too much to support the weight of my body.  A general feeling of malaise comes over you and you feel bad. It is often too much of an effort to even speak or eat when this happens.  I have come across an interesting article about Post Exertional Malaise here
There was also an interesting piece of research which was touched on in this months Inter Action magazine.    The European Journal of Clinical Investigation showed that compared to healthy people ME patients have a profound abnormality in bioenergetic function when exercising.  There is an increase in acidosis within the muscle and an almost four fold prolongation of the time taken for the muscle acid to return to normal compared to normal controls.  The total post exercise acid exposure was approximately 50-fold higher in ME patients when exercising to the same degree as normal controls.  Of course they go on to say that why this should be they really don't know, but the process of returning acid levels to normal is  regulated by the autonomic nervous system so it might be related to the autonomic dysfunction found frequently in ME patients or a reduction in vascular run off may also be a possibility. 
I sort of feel as if the scientists are getting closer to finding out more about the causes.  Three new bits of research have just been funded by Action for ME, one of those is about muscle dysfunction, one about sleep and one about cognitive impairment pre and post exertional malaise.  It's just great that this research is being done, but of course it is all funded by donation and charity work.  I am inspired to try and raise some money.
So, going back to my digging, not only did I not crash during digging, but neither did I have any delayed fatigue response - which I've been waiting for all week.  This is good news and I can't help linking it to the Perrin treatment as this is the only thing that has changed in my routine.  I really look forward to my treatments, it's like I'm just filling time for the rest of the week until it's time to go again - not a very mindful way of living!  It's just me being my normal impatient self and wanting things to happen NOW.  Fortunately I have Ant at my side to offer his calm measured approach whenever I get too carried away.

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