Discussion in 'Laboratory and Genetic Testing' started by Sasha, Nov 11, 2017.
Is the CPET (either one-day or two-day) safe for PWME, in terms of not causing permanent worsening?
Impossible to predict I'd say. I could do it and not suffer any permanent worsening, but I've been exercising for about 85% of the 12 year duration of my illness.
I'd certainly think twice about doing it if I'd never done any exercise at that kind of intensity before, I'd want to test the water first with some lower level tests first.
As I said, in terms of not producing permanent worsening, but I'm wondering if you think I'm missing something! How would you define 'safe'?
In terms of not producing a worsening, even a temporary one, that impacts on health enough to prevent other, more important tasks, from being carried out i.e. it's possible for someone to be prepared with being laid up for weeks if they have support available to pick up the slack, so it's "safe" but for someone who didn't have that support, it's not "safe" because it could impact their ability to eat, and associated activities that this depends on.
The 2 day CPET test is the most risky test anyone with ME could ever do.
As I’ve said in another thread, it took me 6 weeks to go back to baseline, or so I thought, and then I started going downhill and I have not gotten better. I did it about 4 months ago and this is definitely the worse I have been since being ill, 3 years ago.
But then again, my life is stressful and there is no way to tell that this test is the actual cause of my worsening. I don’t work anymore and resting is my main occupation. But I live alone and there are things I don’t have a choice but to take care of.
Some people get a lot worse from it and never completely recover. Others don’t even remember crashing from it.
You might want to see how you did in your stress echo. Mine lasted 8 minutes and I crashed for 3 weeks. The CPET test will last about the same time you lasted on your stress echo. If you crash for 2 months after a stress echo, then I would be very worried about the 2 day CPET test.
OT but that might be a marvelous name for a movie about ME - The Worsening.
Or do I just watch too many low budget horror films?
Just googled a bit, and found this in relation to the two-day test:
(The whole article is here.)
I think it is a bad idea. I can see it could cause serious relapses.
It's certainly not something I would consider unless I had no other options e.g if my welfare payments were dependant upon doing so.
Moreaus stress test might be a better bet:
Moreaux was asked to produce a stress test which produced post exertional malaise but didn’t wipe out the patient like exercise tests do. He settled on a massage machine that’s able to produce PEM symptoms over 90 minutes in about 2/3rds of patients. "
Interesting! But only if what you're interested in is PEM, though, rather than looking for heart/mito problems.
Depends on severity of illness. Don't think should be done by anyone with severe ME (except perhaps in very exceptional circumstances).
I was frustrated recently when somebody asked on an ME forum about a single exercise test and virtually everyone said: you'll be grand with some adding that they survived it ok. There are different severities of illness and some people have more back up supports than others/some have more ongoing demands.
I think it's worthwhile for well-designed research. For disability purposes, if someone scores poorly enough on day 1, there shouldn't be a need to do another one 24 hours later.
It all depends on the person and how severe their ME is. I don't think that I would have a problem doing it, but it really depends on how physically active you are. For someone pretty much bedridden I would expect them to have a severe reaction to the testing, but for someone like me who can do light to moderate amounts of physical activity it probably would only affect us for a couple of days.
@Sly Saint what is a 'massage machine". Do you know?
I've had two treadmill tests post-ME -- the type that measure heart but not lung function. Although not hooked up to the breathing apparatus that measures oxygen consumption, anaerobic threshold, etc., I believe these would give an indication of my response to a one-day CPET test.
The first time, I noticed significant weakness about six hours post test, and continued to worsen during the next few days. What surprised me was that although I hadn't used my arms during the test, they were most affected. Five days after the test, I had pretty much recovered.
The second time I had been bed bound (in hospital) for 4 1/2 days before the test, and experienced no adverse effects. I've read recommendations that ME patients rest for several days before a two-day CPET test. Presumably, this means resting will not affect the test results.
With a different type of exercise challenge (being guided through a series of floor exercises prescribed by a yoga "guru" who believed ME was the result of living in an affluent society), my worsening started partway through his program. I began shaking so badly, the guru thought I was on drugs. The yoga studio owner said my program was more strenuous than any other program this visiting Indian doctor had developed for her patrons. Perhaps he was trying to prove I wasn't really ill, since he claimed ME doesn't exist in his country.
My experience is that sustained low-level activity, especially using my arms, and even when sitting or lying down, is worse in terms of PEM and recovery. In situations like this, it typically takes weeks or months to return to baseline -- sometimes years.
I read that an ME patient needs total rest for two weeks before the CPET testing in order to get accurate results. Otherwise the second day's results wouldn't look much different from the first day's results.
I very much doubt it. I imagine different people are affected to different degrees, and the more severe you are to start with the worse the likely outcome. Just my opinion, it's not based on any science.
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