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

[Jonathan Edwards]

I don't think the first bit is true.

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.

 

[Kitty]

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.

 

[Hutan]

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.

I think many people with my level of severity would be okay doing 8 minutes of cycling. The large numbers of people who have done the two day CPET tests in the limited places where those tests are offered are proof of that. But sure, these studies are recruiting people with a certain level of severity, bad enough that they are willing to make a substantial effort to understand their illness better, but mild enough that they can do the task and don't expect to be permanently disabled by it.

 

[Holinger]

I think many people with my level of severity would be okay doing 8 minutes of cycling. The large numbers of people who have done the two day CPET tests in the limited places where those tests are offered are proof of that. But sure, these studies are recruiting people with a certain level of severity, bad enough that they are willing to make a substantial effort to understand their illness better, but mild enough that they can do the task and don't expect to be permanently disabled by it.

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.

 

[Murph]

I think many people with my level of severity would be okay doing 8 minutes of cycling. The large numbers of people who have done the two day CPET tests in the limited places where those tests are offered are proof of that. But sure, these studies are recruiting people with a certain level of severity, bad enough that they are willing to make a substantial effort to understand their illness better, but mild enough that they can do the task and don't expect to be permanently disabled by it.

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.