ME/CFS progression in years and stages

[bobbler]

I am really wary of CPET becoming a standard for testing patients for this very reason. PEM is not benign it can cause permanent worsening and that worsening can result in our death. CPET is not ethical even if it is an objective measure in a field desperately looking for one to use on trial outset and exit its far too dangerous for anything other than the study of PEM itself. Even then I think we might look back on those studies and the harm they did differently in a few years.

Yes indeed it’s obvious it would be a huge risk, and somewhat terrifying when I think of how many (non me/cfs) people out there think re: testing people

I just had not yet heard/met a first hand account, perhaps because they aren’t common here still.

I’m trying to not be intrusive or inappropriate or insensitive to someone as it is their life and health but also for that reason also very important

it has struck me whether we have any pages collecting the impact of two day cpet like these?

 

[wastwater]

I think I’m following the timings of MS and just to confuse things even more my genetic disorder seems to come with a MS mimick that may even present in childhood