Is a CPET safe for PWME?

Given the nature of ME, and given the nature of the test, I find it surprising that those who have patients do the CPET don't appear to have routinely kept long-term follow-up data on this.

 

I am part of Dr Moreau’s clinical study. I’ve had this done. I seriously doubt that it gave me anything vaguely resembling PEM. Or if it did, it was very light PEM.

 

@Sasha, all I can share is I did an overambitious 200 metre walk seven years ago which caused a massive relapse from which I still have not recovered. I was until I did that walk able to leave the house in a wheelchair a few times a week for short trips and mobilise around my flat, so moderate-severe at that time.

 

Really sorry to hear that, anniekim. Just goes to show a one-off effort can cause a big relapse.

 

Thanks @Sasha. Yes, a one off big effort can definitely cause a long term relapse. Jen Brea in her film mentions walking back from seeing her doctor, who wrongly said she had conversion disorder during the appointment, to her home to test herself and relapsed as soon as she got home. She says in interviews even though she has improved she still so far has never has managed to walk as far as she did up until that fateful walk.

 

I had chest pains for 22 hours after day 1 of the CPET. Told the doctor who referred me, and he said to take it a little easier on day 2. Maybe should have skipped day 2. Crashed for a week after the testing.

I certainly wouldn't do this test again.

 

Q. Surely taking it easier on day two sorta defeats the point?

Not that I'm suggesting you shouldn't have, just that maybe you were too ill to attempt it in the first place.

 

Not necesarily. Going up to anaerobic threshold may be enough, because as others have mentioned that's where the biggest difference is between pwme and controls.

 

Interesting, I had occasional chest pains for about 2 weeks after the tests. I haven't heard of others reporting this. (I think mine were chest muscle related, not heart related though) and took me 3-4 weeks to return to previous level of functioning.

I can't recommend the test either, if you have no underlying reason to do it. 2 day maximal exertion test is as hard as it sounds!

 

You're right, Wonko, probably shouldn't have done the test.

I think Dr. David Systrom's invasive CPET might be easier for those more severely ME effected; don't know though. The Solve ME/CFS Initiative has a recent article on this test. Dr. Systrom is doing a study on pwME, and I understand has had some success treating ME with Mestinon, a drug used for Myasthenia Gravis.

 

I am broadly against people cutting holes in people just coz they are interested seeing what happens after they have done so.

 

The iCPET isn't something I would do.