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Experiences of CPET testing

Discussion in 'Physical testing (e.g. CPET, actimetry)' started by chicaguapa, Jul 9, 2018.

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  1. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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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.
     
  2. Andy

    Andy Committee Member

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    Brilliant, thanks. :thumbup:
     
  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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  4. chicaguapa

    chicaguapa Senior Member (Voting Rights)

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  5. chicaguapa

    chicaguapa Senior Member (Voting Rights)

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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.
     
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  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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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.
     
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  7. chicaguapa

    chicaguapa Senior Member (Voting Rights)

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    Indeed. That was in the back of my mind yesterday which made the results bittersweet.
     
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  8. Andy

    Andy Committee Member

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    This thread for discussion, and set up another thread for places that do testing?
     
  9. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    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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  10. chicaguapa

    chicaguapa Senior Member (Voting Rights)

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    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:
     
  11. Hutan

    Hutan Moderator Staff Member

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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.

    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.
     
  12. chicaguapa

    chicaguapa Senior Member (Voting Rights)

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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.
     
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  13. Amw66

    Amw66 Senior Member (Voting Rights)

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    We have a number of colleges / unis offering sports science/ coaching - I will make a few calls
     
  14. Andy

    Andy Committee Member

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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/
     
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  15. Mithriel

    Mithriel Senior Member (Voting Rights)

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    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.
     
  16. TiredSam

    TiredSam Committee Member

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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.
     
  17. NelliePledge

    NelliePledge Moderator Staff Member

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    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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