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Repeat CPET Literature Request.

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by bananabas, Sep 9, 2015.

  1. bananabas

    bananabas Senior Member

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    I find PEM/PENE to be vague and subjective and, as stated in this post, I am opening a new thread.

    It is my current understanding that 2 consecutive CPETs, separated by a 24 hour period, is the golden standard for objectively assessing PEM/PENE.

    I would like to undergo such a test in a private clinic, where healthcare professionals will probably not be familiar with ME/CFS. Therefore, I would need to know exactly what to ask them for as far as setting up the tests. I would also need to know how to interpret the results later on, on my own.

    Could you please help compile a list of up-to-date peer-reviewed articles where I could find this information?
     
  2. halcyon

    halcyon Senior Member

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    See the bottom of this page for starters.
     
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  3. bananabas

    bananabas Senior Member

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    Something I don't understand here is, wouldn't a normal guy also be more tired 24 hours after the first CPET, is that is intense enough?
     
  4. Mij

    Mij Senior Member

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    Listen to Mark VanNess's video on the link halcyon provided. He explains it.
     
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  5. Valentijn

    Valentijn Senior Member

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    A normal person will perform the same on a maximal CPET 24 hours after the first. An ME patient should perform significantly worse, while still exerting maximal effort.
     
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  6. waiting

    waiting Senior Member

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    Also, if only the 1-day test is done, some ME patients will have poor enough results that their results can look just like deconditioned patients. As @Valentijn said, the day 2 results dispel this.

    Doing the 2-day test also gives you useful data that you can use to help you pace by wearing a hear rate monitor to warn you with an audible alarm when you go over your test-measured heart rate at the anaerobic threshold.

    Some ME patients' HR at AT can drop as much as 50% on Day 2. So, it's the Day 2 HR measure that you want to go by every day.

    ME patients go over this HR at AT measure much more quickly than normal.

    If you want to do the test, I know of only 2 labs where Staci Stevens' protocol is followed -- her own lab at Workwell in California --and Betsy Keller's lab in New York.

    Finally, like a ton of other stellar ME research, it just requires proper funding to be able to generate enough reproducible results in enough patients to be fully accepted. That proper funding is still not there. In Staci Stevens' case, her protocol has been reproduced by 2 independent research groups that I am aware of -- Betsy Keller & Vermoulen.
     
  7. bananabas

    bananabas Senior Member

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    Nowhere in Europe? How hard is it to implement her protocol in a stadard testing facility for athletes, let's say.
     
  8. Denise

    Denise Senior Member

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    I believe the issue is not implementation of protocol so much as interpretation of results and the write-up.
    Additionally if cognitive testing is done, the interpretation of that is not something most athletic testing facilities would undertake.
     
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  9. waiting

    waiting Senior Member

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    I don't know if Vermoulen has a lab that accepts patients for clinical testing (apart from the research he conducts) -- but here's a recent paper of his -- perhaps you could try contacting him. He's in the Netherlands.
    http://www.translational-medicine.com/content/12/1/20
     
    Last edited: Sep 10, 2015
  10. A.B.

    A.B. Senior Member

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    I have done a single CPET and was surprised by the results. If you wish to establish that your exercise problems cannot be fully explained by a sedentary lifestyle (and depression / anxiety as suggested by a psychiatrist) then a single CPET should be sufficient. My results were significantly worse than that of sedentary people. CPET is a widely used procedure and there are good reference ranges available.

    Grabbing the first study that comes up in Google with reference ranges for sedentary males: http://www.scielo.br/pdf/abc/2010nahead/en_aop15110.pdf

    I'm in age group 2, where the VO2max was 41.9 ± 7.2 ml/kg/min and maximal ventilation was 108.3 ± 23.7 l/min. I got 18.5 ml/kg/min and 43 l/min respectively.

    PS: according to a conservative interpretation of symptoms, I don't have real PEM.
     
    Last edited: Sep 11, 2015
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  11. Valentijn

    Valentijn Senior Member

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    This is a good point. Deconditioned healthy people will score below normal on a single CPET, but not by a lot. Whereas a moderate ME patient (mostly housebound) will score far below normal. The two-day CPET is likely to be most useful for mild ME patients who only score a bit below normal on Day 1. These are usually the patients who are able to work, shop, and socialize somewhat, but often still suffer for it afterward.

    Like @A.B. , my scores were far below normal. And even then were probably over-estimated a bit due to my "resting" heart rate not being a proper rested heart rate, as it was elevated due to traveling and sitting up too long. Normal VO2max for an active woman aged 35-44 (I'm on the low end of that) is 34.9, and a bit lower at 30.0 for a sedentary woman. But mine is 11.9.

    A sedentary woman in my age group has a VO2max at 86% of what an active woman has, which isn't a large difference. But mine is only 34% of an active woman's score, and 40% of what a sedentary woman experiences. That's a pretty huge drop. On the American Medical Association's "scale of disability" that puts me in Class IV on the scales used to assess cardiac and pulmonary disability. On one of those scales, it's the worst possible score, and on the other, it's the 2nd worst out of 5.

    My experience in using that data thus far has been overwhelmingly positive. An independent doctor at an assessment seemed to think I could be cured by CBT and GET, and accordingly advised against a waiver for language testing needed to stay in the country. But by the time of the meeting with the actual agency making the final decision a couple weeks later, I had the results of my single CPET, and that was literally all they needed to completely disregard the assessing doctor. Similarly, that data, plus the explanation of my low blood pressure if I stand around waiting for someone, resulted in an independent doctor's immediate approval for a passenger's handicapped parking permit - and those are MUCH harder to get for non-drivers.

    Thus far no one who has looked at those results has had a single thing to say about deconditioning or CBT and GET. I'm hoping the trend continues, because to get my citizenship I will need a doctor from the group which initially recommended against a language waiver to now recommend a more serious waiver. I'm hoping the VO2max results will make a difference, plus we'll argue with them about Dutch psychobabblers if we have to. Last time I was trying not to offend by disagreeing outright with their base assumptions, but rather I was innocently explaining how those things had not worked for me when I tried them.
     
    Last edited: Sep 11, 2015
  12. waiting

    waiting Senior Member

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    It's the 2nd day drop in results that actually measures the PEM. It demonstrates inability to maintain homeostasis.

    Every other disease -- even COPD, heart failure (and sedentary people) --will not have their results drop (beyond the accepted 7% variability in any CPET) on the 2nd day. So far, it's only ME patients who show this result.

    And, of course, other disease groups will recover (symptomatically, after the test) within a day (see Workwell's papers for details) - but not the ME patients. This also shows PEM, but it's not an objective measurement like the drop in hard numbers from day 1 to day 2 CPET.

    And yes, they (Staci Stevens' group) have reported that there are some patients whose day 1 results are so severely low that they tell the patient they don't have to return for day 2. Even then, many patients ask to do the day 2 anyway because they want the data.
     
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  13. A.B.

    A.B. Senior Member

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    I wouldn't be surprised if I actually scored lower on the 2nd day. I have noticed many times, even though it is not guranteed, that on the days following higher than normal exertion I have less energy and feel like doing nothing. One could say that I'm sicker. I don't get weird neurological or flu like symptoms, and exercise isn't nearly destructive as it is for many other people here, so it's not clear to me whether this is a milder form of PEM or regular exercise intolerance.
     
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  14. bananabas

    bananabas Senior Member

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    What is "regular exercise intollerance"? I've seen that mentioned a couple of times now.
     
  15. A.B.

    A.B. Senior Member

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    I put "regular" in front of it only distinguish it from PEM.
     
  16. bananabas

    bananabas Senior Member

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    OK, but what is exercise intollerance?
     
  17. A.B.

    A.B. Senior Member

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  18. bananabas

    bananabas Senior Member

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    Was the single CPET performed by KDM? Also, by "explanation of my low blood pressure if I stand around waiting for someone" do you mean POTS? If so, who diagnosed that for you?
     
  19. Valentijn

    Valentijn Senior Member

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    Yes. He's a cardiologist as well, which probably helps.
    No, I don't have POTS. I have a different form of orthostatic intolerance. I don't suppose it's been specifically diagnosed, but several doctors have observed it while trying to check my blood pressure. In my case, my pulse pressure is usually much too low, which could be a form of Neurally Mediated Hypotension.
     
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  20. bananabas

    bananabas Senior Member

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    I deduce you're trying to get your dutch citizenship, however I don't understand the language waiver issue and how that connects to ME/CFS.
     

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