Thanks Duck
I'm wondering if 'something' were to be found and accepted, something that could be seen as 'abnormal' and a justification for our debilitation, something 'more' than what is known at present, that would allow (as Currer said) ME to be 'recognised' for what it is; that even if there was to be no treatment specifically forthcoming - if that knowledge, that visibility - would be enough for some people to fight against? For me to fight against?
I don't know. I guess (or like to think) that if my scans had showed say an inoperable tumour or whatever it was they were looking for way back when - and they'd found 'it' - I would either crumble completely or dig even deeper and fight to make the best that I could from my life.
Not saying that I could have made the grade as a competitive athlete - I'm not the type - but I wonder if such evidence would provide a 'spur' to other people who are/were capable of donning the training shoes in an appropriately catered-for sports discipline?
Some of these Paralympians were - as has been said - born with their disability and others have had to adjust to disability that occurred suddenly or progressively in later life either due to loss of limbs or to disease. What makes us any different? Well there's this whole intolerance of exercise of course - but could that be catered for in any discipline? Sport of course implies use of energy and energy is perceived as the one thing we don't have in ready supply - is that the same for everyone of us all of the time?
And I guess it depends also on further research determining if someone with a biomedical diagnosis of ME (whatever that proves to be) has it for life - i.e. it is incurable but perhaps manageable with treatment/interventions. I think that this might also be a requirement for athletic competition. At present ME (or CFS whatever your preference) is 'sold' as being something you might recover from.
If though research does find 'something' we can point to and say 'Right. I know what it is now. I can fight against it.' and maybe if it is something that does indeed demonstrate ME is a fluctuating condition (similar perhaps to MS) and manifests differently in different people at different severities - perhaps some folk so inclined might well use it as a springboard to 'go for it'.
Unless of course, said research, concludes that exercise should be avoided [period]. But even if it did - even if the risks were known and underlined by the medics - I doubt that it would prevent some from fighting against it as much as they do now. Human nature.
Anyway, thanks. It's been an interesting conversation.