Open (Melbourne, Australia): Baker Institute - Understanding exertional and orthostatic intolerance

You may be a bit unusual though! I merely said 'likely not'. If we are talking about serious PEM with days in bed surely many would likely not.

 

Also if we're talking about the risk of triggering a cascade of events ending in severe ME/CFS.

Because it's noticeable how few people say their illness started at the severe level. They mostly became severely ill after stuff happened.

 

I would probably be the perfect candidate for this study being in the area but I am not sure I trust them to use the data to not green light “rehabilitation programs” for us patients. I’m ok with doing the test and falling over afterwards if I think it would benefit science but after reading further am a bit worried.

 

You can see some level of self-selection in my response to the email from Baker institute:

> thanks for the email. I'm probably going to hold off on this. My health has been retty tenuous recently and I can't afford a setback. I'll get in touch later in the year if I'm feeling more up to it.


Now it is later in the year and I'm feeling a bit better and considering doing it! I think I'd happily do it in exchange for a day or so of PEM. But not in exchange for a long-term reduction in baseline. Earlier this year I felt like any big push would send me backwards in a big way, now I'm feeling less at risk.