Experiences of CPET testing

chicaguapa said:
Could you ask around any universities nearer you and see if any of them have a sports lab that's open to the public? They just need the equipment to be able to do it. We've been calling it the VO2max test so perhaps ask for that in the first instance and then give them the paper with the 2-day protocols in it for CFS.
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I don't know why I didn't think of that! Salford Uni near me does this. Do you have a direct link to the protocol? I can't seem to find it among the papers at the Workwell or via Google.
 
adambeyoncelowe said:
Would it be helpful to create a thread compiling CPET testing across the country? It might be cheaper for many mild to moderate patients than, for instance, Myhill's mito testing.
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Perhaps two threads, one for places for testing and another for discussion? @Andy is on this thread and could comment on that.

Probably need to remember that it was 95% accurate at identifying pwme in the original study, so it's not foolproof. I'm sure I saw someone on PR had got a negative response to it, ie it didn't show he had CFS. But helpful nonetheless if it does show reduced AT and doesn't lead to a prolonged crash.
 
chicaguapa said:
Perhaps two threads, one for places for testing and another for discussion? @Andy is on this thread and could comment on that.

Probably need to remember that it was 95% accurate at identifying pwme in the original study, so it's not foolproof. I'm sure I saw someone on PR had got a negative response to it, ie it didn't show he had CFS. But helpful nonetheless if it does show reduced AT and doesn't lead to a prolonged crash.
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Well if it showed a negative result, I could either retest later, or celebrate the news that I may have something very treatable.
 
chicaguapa said:
Perhaps two threads, one for places for testing and another for discussion? @Andy is on this thread and could comment on that.

Probably need to remember that it was 95% accurate at identifying pwme in the original study, so it's not foolproof. I'm sure I saw someone on PR had got a negative response to it, ie it didn't show he had CFS. But helpful nonetheless if it does show reduced AT and doesn't lead to a prolonged crash.
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This thread for discussion, and set up another thread for places that do testing?
 
chicaguapa said:
The most enlightening thing for us is that both the technician and I felt she seemed better on day 2, both in herself and her performance on the bike. But this wasn't borne out in the test results.
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chicaguapa said:
Watching her today, I wonder if it's effect of exercise on mental health that can be attributed to her perceived improvement in symptoms.
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I also felt pretty much the same when I did the second CPET as I had during the first but showed a significant drop in anaerobic threshold.

I doubt that this is a result of, for example, endorphins from the first exercise masking things as my protocol (as part of a trial) was a 48 hour gap between tests. I've read that endorphins can last for 24 hours, and of course, we people with ME might be special and slow to break them down. But 48 hours seems too long for a mental health benefit from what is a small amount of exercise. I was more relaxed on the second test as I knew what was going to happen; I don't know if this may contribute. It would be good to hear others' experience of perceived well-being vs AT drop on the second test.

chicaguapa said:
Probably need to remember that it was 95% accurate at identifying pwme in the original study, so it's not foolproof.
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There are ways that the study could be confounded. For example, if there is significant exertion to travel to the testing location, the person could already be in PEM on the first test and therefore show no further drop in AT. I'm surprised they got it 95% right.

I find myself wondering how solid this finding is. Is there anything else that could explain this effect? There have been a number of studies now that all seem to report the same thing. Is there any recent review article that looks at the results of all published studies on this?

People seem to report that exercise physiologists with no previous exposure to people with ME are surprised by the results. But I took along a copy of my report from the CPET testing for my doctor to put on my file. She didn't want it. She didn't even want to talk about it. I guess that could say more about her knowledge, her curiosity and her 15 minute consultation deadline than how valid this test is as a diagnostic tool.
 
Hutan said:
I also felt pretty much the same when I did the second CPET as I had during the first but showed a significant drop in anaerobic threshold.

I doubt that this is a result of, for example, endorphins from the first exercise masking things as my protocol (as part of a trial) was a 48 hour gap between tests. I've read that endorphins can last for 24 hours, and of course, we people with ME might be special and slow to break them down. But 48 hours seems too long for a mental health benefit from what is a small amount of exercise. I was more relaxed on the second test as I knew what was going to happen; I don't know if this may contribute. It would be good to hear others' experience of perceived well-being vs AT drop on the second test.
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My daughter agrees with this and says she appeared better on the second test because she was less anxious and knew what was going to happen.
 
adambeyoncelowe said:
Agreed. Later today, I can dig up some local services that do this, if someone else wants to start the thread? Maybe after we've got the list together, we can collate everything into one easy document or web page with links?
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chicaguapa said:
Yes, that would work well, because discussion around the CPET would eventually lead to discussion around the management paper by the same authors, as per the title of this thread. :thumbup:
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New thread here, https://www.s4me.info/threads/uk-locations-that-offer-cpet-vo2max-testing.4999/

Also this thread came up when I was doing it, may be of interest, https://www.s4me.info/threads/2-day...e-videos-papers-your-experience-discuss.1491/
 
I read an article about fatigue in the MS society magazine which had been written about fatigue in rheumatoid arthritis for their magazine - if you follow me. It said that people with fatiguing illnesses lose the ability to recognise tiredness because they live with it all the time. They do not stop until they have gone into exhaustion where healthy people can recognise when they are tired and stop for a bit.

The same thing most likely applies to us, possibly more so since we have energy production at the root of our disease.
 
Mithriel said:
It said that people with fatiguing illnesses lose the ability to recognise tiredness because they live with it all the time. They do not stop until they have gone into exhaustion where healthy people can recognise when they are tired and stop for a bit.
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That doesn't reflect my experience at all. I am a lot more sensitive to tiredness now than I was before I got ill, and I stop as soon as I notice it. Training myself not to go into exhaustion is an essential part of learning to pace, I have been forced to recognise it or suffer the consequences.
 
im helped in spotting when my energy is going too low and I should stop as I start getting a croaky throat which I dont have when energy is at 'my normal'
not always possible to stop though eg yesterday was at local ME group get together and started croaking after about an hour still had to get home - half hour journey........
 
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