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2 day CPET testing for anaerobic threshold in ME/CFS. Share videos, papers, your experience, discuss.

Discussion in 'BioMedical ME/CFS Research' started by Trish, Dec 12, 2017.

  1. Trish

    Trish Moderator Staff Member

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    I have just watched this video from 5 years ago posted in another thread. I thought it was the best explanation I had seen about the 2 day CPET and deserved a thread of its own.
    I suggest you we use this thread to collect talks, published papers etc and discuss people's experiences as well.

    Seminarium om ME/CFS (Kroniskt trötthetssyndrom) Stockholm 11 September 2012. Professor Christopher R. Snell, Pacific Fatigue Laboratory, Kalifornien, USA

     
    Last edited: Dec 12, 2017
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  2. Trish

    Trish Moderator Staff Member

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    There are also two talks by Mark van Ness.

    Dr. Mark Van Ness, "Expanding Physical Capability in ME/CFS" Part 1 (of 2)



    Mark VanNess 'Exercise and ME/CFS' at Bristol Watershed. Part One


     
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  3. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    I've downloaded the machine transcript for the first video and attached the file, but be warned - it is without punctuation or paragraphs. It can be used for searching words if you would like to extract parts of the talk.

    Users might have a program that will auto format it, but I've tried and because of the lack of punctuation I cannot get auto format to work in LibreOffice.

    Another option for all users to extract parts from youtube videos, or to find a time in a video of an event is:

    • Underneath the video look for this
    • [​IMG]
    • select the three dots
    • choose 'open transcript'
    A transcript will now appear on screen, with timestamps. To toggle the timestamps:

    • Look for this
    • [​IMG]
    • select the three dots again
    • select 'toggle transcripts'
    All videos with captions will have a viewable transcript. The transcript and captions are auto generated so expect spelling mistakes.

    An amusing mistake from the first video is 'climate fatigue syndrome' which I'm sure we suffer from time to time :)

    Sorry for not being able to format the attached text, but it's beyond my capacity today, too much present wrapping to do.
     

    Attached Files:

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  4. Trish

    Trish Moderator Staff Member

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    For anyone unable to watch these videos, the main messages I get from the first one by Professor Christopher R. Snell are:

    The 2-day C-PET (cardio pulmonary exercise test) is an objective way of measuring the anaerobic threshold, which is the moment in an exercise test where the muscles switch from efficient aerobic exercise to inefficient anaerobic exercise which produces a build up of lactic acid.

    In healthy sedentary controls, the threshold rises slightly on the second day. In ME/CFS patients it falls quite dramatically.

    This test is diagnostic for ME/CFS and useful for disability insurance claims.

    It should not be done lightly however, as the ME patient can take days or weeks to recover from the PEM it induces.

    An approximation for finding the anaerobic threshold is heart rate used along with awareness of symptoms.

    The exercise regime advised is very short (under 2 minutes) periods of activity, usually just the necessities of life, with rests in between, using heart rate and symptoms to gauge when to stop. Always sit rather than stand wherever possible. If additional exercise is possible, it should be short bursts done lying down and only when feeling well enough.

    By staying under the anaerobic threshold patients have a better chance to stabilise their condition and work out a way of functioning within it. It is not a cure.

    He is very scathing about GET and the studies that promote it. He is clear that graded exercise is counterproductive.
     
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  5. Sbag

    Sbag Senior Member (Voting Rights)

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    Does anyone know where to get a cpet 2 day test done in the UK? If it can be used to prove disability then it may be worth the relapse to then not have to fight for benefits with all the stress and fatigue that brings.
     
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  6. alex3619

    alex3619 Senior Member (Voting Rights)

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  7. alex3619

    alex3619 Senior Member (Voting Rights)

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    Many major hospitals and sports medicine centres can do CPET. The question is not whether it can be done, but are they willing to do it. Anecdotally, patients have been winning court cases based on this test.
     
  8. Medfeb

    Medfeb Senior Member (Voting Rights)

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    In his final decision, the judge in my son's disability case explicitly said that it was the objective results of the 2-day CPET that convinced him my son was too impaired to work.
     
  9. Keela Too

    Keela Too Senior Member (Voting Rights)

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    My own personal feeling is that I would avoid the 2 day CPET.
    6 mins maximal exertion would floor me, and repeated the next day would I fear permanently lower my abilities.

    It is a problem when the very act of measuring something might ensure that the score obtained is already obsolete, because of the harms of the measuring process. :(

    PS Having said that I do understand why people may be driven to take the risk. xx
     
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  10. Valentijn

    Valentijn Not a moderator

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    I think a 2-day CPET is only necessary to show pathology in mild cases. Moderate-severe will have abysmmal scores even on a single test, which proves disability by itself. Deconditioning only results in mildly lowered scores, so disease can't be confused with deconditioning if performance is poor enough.
     
  11. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I feel the same as @Keela Too having had an informal test by a cardiologist walking me round a hospital including one flight of stairs. My hr reached 140 and I was significantly worse for a year transferring to wheelchair use outside the house. Really totally bedbound for long spells.

    Last week I needed a stress echo for a heart condition. I was very concerned about this, saw my ME Consultant for advice and, with cooperation from the cardiologists, worked to a significantly lower hr than is usual for a stress echo.

    They got the info they needed without me collapsing. The first test totally exhausted me. I wouldn't risk a 2day CPET.

    EDIT: it's possible I haven't returned to pre cardio assessment levels.
     
  12. alex3619

    alex3619 Senior Member (Voting Rights)

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    Thank you for saying this. I have been relying on claims from Workwell, now I know patients or their carers are saying the same thing.
     
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  13. alex3619

    alex3619 Senior Member (Voting Rights)

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    I have been saying for years, though not explicitly spelling it out, that you can probably find the anaerobic threshold in severe cases by running just the gas analysis. Its because severe patients might be over it even just lying down. This is even more likely for the very severe.
     
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  14. alex3619

    alex3619 Senior Member (Voting Rights)

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    I am a moderate patient verging on severe. I am probably in the middle area where it might be very useful but its a risk. Its main use is to find the anaerobic threshold so I can figure out how to exercise, or for legal reasons, including disability claims.
     
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  15. Sbag

    Sbag Senior Member (Voting Rights)

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    thanks for the comments and I completely understand what everyone is saying. My consultant has said I am permanently disabled, have undergone all treatments and am unlikely to recover. However insurance company have decided to ignore this and got an opinion from their CMO who turns out is a young(ish) GP. CMO (GP) has said completely contradictory stuff (without having met me). Even though I have picked those statements apart they still will not settle and want me to see a fitness to work assessor - who on his website happens to state how he believes ME should be classified as a mental health condition. The process is taking forever and although I know I can contradict all of their arguments and I am happy to get an alternative assessment to the one they are trying to arrange I was just thinking that getting a CPET test done might speed up the process. Otherwise their medical assessment is bound to say that I am able to go back to work in the future and they will turn me down and then we will go to the ombudsman. I am happy to go through all of that but being a year in to the process already this may be a good tool for me to be able to say I do have physical problems. As an aside my medical tests over the years have shown many irregularities but not a specific disease hence the ME diagnosis. However their CMO has said there are no pathological abnormalities and nothing has been diagnosed therefore I am not physically ill. My definition of pathological would be something physically different - does that sound correct? ie, lower number and misshapen red blood cells - these would count as pathology wouldn't they? I have others but don't want to bore people :)
     
  16. Inara

    Inara Senior Member (Voting Rights)

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    That was the problem in my case, although I confess the problem was me sending a paper with 2 day CPET. They refused to make these tests.

    Does anybody know of a possibility in Germany? If it helps with lawsuits, I could really use it.
     
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