I'm not sure exactly why you raised this point,
My only point is that
most diagnosed PWME cannot exercise as much as you do because those diagnosed based on a 50% reduction in activity level by definition have little energy to exercise. As a consequence, it's going to be hard to find PWME with much experience with exercising safely at your level.
Personally, I think 50% reduction in activity level is a poor measure of whether one has ME. My feeling is that PEM is probably the defining factor and that can occur in people at almost all levels of activity. If a runner only gets PEM after running a marathon, it's still PEM and it's an abnormal reaction to exercise. That person would not fit the 50% reduction standard, though, because not being able to run a marathon doesn't reduce a person's activity level by 50%. That person can still do most of what they could do prior to developing ME. I suspect there are many people who actually have what could be considered mild ME, but don't realize it because their symptoms are not debilitating at the level of patients who can be diagnosed by current criteria, much like HIV-positive patients were not known to be ill before the discovery of the virus because they were not as ill as AIDS patients. That doesn't mean they weren't dangerously ill; it just wasn't recognized.
In my own case, I was running an average of 20 - 30km a week at best, and housebound at worst. It really just highlights the point that everyone is different, even if I could still run 10-15km (I wish!), I would still meet the criteria.
I'm not sure that's entirely accurate. Being able to run only half as far is NOT a 50% reduction in activity level overall. That's a 50% reduction of a specific activity at the high end of exertion. Not the same thing. What would be closer to a 50% reduction
overall would be if you could keep working full time and taking care of your home, yourself and your family, but not be able to run anymore. All that said, I don't think the 50% reduction in activity level is a very sound measure of whether a person has ME or not, so it's probably moot.
The Doctor who diagnosed me was on the panel, so I'm fairly confident that the diagnosis is correct, in case you were meaning to caution at that possibility.
Nope.
Based on what you said earlier, I don't have any doubt that you have ME. PEM is PEM regardless of how much you can do before you get there.
I'm a bit weary of getting CPET done, do they take you all the way to V02 max?
Given that you can run atm, you probably won't suffer overmuch from the CPET. The bike test only took 8 mins for me, iirc. If you run longer than than now, you'd probably be okay. It's also possible to do a submaximal test, only up to (or just before) your AT if all you want to know is your AT. There is some concern that the AT on the second day of a 2-day CPET would be lower because of the effect of compounded exercise. If that's the case, then the submaximal or 1-day CPET tests would give an AT somewhat too high. Still it's better than blindly guessing at your AT, or worse, using the calculated AT for a healthy person. You can always decide to stop exercising below your measured AT if you find yourself still PEMing.
I have my eye on the
Moto 360 Sport Android Watch, I hope that it has the ability to alarm on heart rate. What HR monitor are you using that has an alarm? Does that MIO one have an alarm? Something that constantly monitors would be perfect.
IIRC, the Mio Alpha 2 has an alarm. I've still got my rotten old chest-strap Omron, which I only need to use now when I'm doing something outside my normal range of activities. I hate the chest strap, but I like the continuous monitoring and the alarm feature because I don't have to keep an eye on it all the time. I'd get a Mio, but I couldn't afford two of them and daughter was higher priority at the time. The Moto 360 Sport Android is definitely outside the budget.