New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Advanced/Invasive CPET?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by RebeccaRe, Jan 22, 2018.

  1. RebeccaRe

    RebeccaRe Senior Member

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    I recently saw Dr. Systrom at Brigham and Women's Hospital in Boston, and he suggested having an advanced CPET (the kind where they put in a couple of catheters before you exercise). Have any of you ever had this test before? What did it feel like? How did it go? Did you recover easily? Did you receive useful data from it?

    I'm a little (okay...very!) nervous, and I'm on the fence about scheduling it.
     
    mattie likes this.
  2. *GG*

    *GG* Moderator

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    Not knowledgable on this testing, I have had the 2 day in a row CPET testing done (in Ithaca, NY).

    You on Facebook?

    GG
     
  3. TenuousGrip

    TenuousGrip Senior Member

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    I had mine in mid-November (w/Systrom and Waxman). All things considered, the entire thing went fine.

    No part of it is especially fun ... but it wasn't anything like a misery for me. I would also say that nothing was painful. It's really just one pretty long day ... if you know what I mean.

    If you've been through a few push-crash cycles ... well ... this will quite likely just feel like another one ;-)

    In my case, I got very valuable data from the iCPET but it wasn't particularly good news. I wrote about it here.

    I felt very well cared for at Brigham & Women's. To a person, they were all kind, professional, efficient, and compassionate. If I can answer any specific questions for you I'd be happy to try.

    Oh ... and if you do go that route ... in the Cath Lab ... tell them you've heard good things about "Suga' Booga'"

    Trust me :)
     
  4. RebeccaRe

    RebeccaRe Senior Member

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    Thank you--it's reassuring to know that the test isn't not all that terrible and didn't hurt too much. Today I remembered that few of my students have had this test in the past (I work with kids who have special needs, several of whom have heart defects). So if they can do it, I can't wimp out! Still, I'm bit worried about fainting--I actually had to lie down when Dr. Systrom was describing the test because I began to get a little lightheaded.

    Oy, I'm sorry that you got such a difficult diagnosis. How are you hanging in? I am impressed that someone who wrote a post entitled 'bad news' that does contain genuinely bad news still managed to throw in a few smiley faces.

    I don't know...I spend so much time trying to convince doctors that I'm not crazy, and I feel like using that phrase in a cath lab that might be a step backwards!
     
  5. lnester7

    lnester7 Seven

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    I saw this used on a POTs research and I really think we have the best shot for objective testing on CFS. We can see the anomalies even if you don’t know why and it is a FDA aproved.

    The 2 days Cpet would need to be approved vs this one is not.

    I wonder if as a community wouldn’t be smart to use this in research as a objective measure and to subtype
    Populations.
     
  6. RebeccaRe

    RebeccaRe Senior Member

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    That's the main reason why I'm considering going ahead with the testing. I'm big on solid, tangible evidence, and it seems like this test can provide a good look at what's going on in the body. And the results seem like they'd be more convincing than blood tests (if I had a nickel for every time I heard "Well, your test for Lyme is negative, but that doesn't necessarily mean that you don't have Lyme...")

    I'm afraid I don't understand--do you mean FDA approved or insurance approved?

    Does the data collected so far show clusters of different results for different 'flavors' of ME/CFS?? I'm trying to read an article on this topic but I'm having such trouble understanding it.
     
  7. lnester7

    lnester7 Seven

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    BOTH. see this
    POTS - It’s Not Deconditioning!
     
  8. RebeccaRe

    RebeccaRe Senior Member

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    Thank you--this video is was informative and helpful! Of course, watching the fellow pump away on the exercise bike with all of the tubes and wires doesn't make me feel very enthusiastic about doing this, but I suppose if he can do it so can I.

    Thankfully my insurance company said that they cover these diagnostic tests (thank goodness), so I'm good to go!
     
  9. Marty

    Marty Senior Member

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    I did the invasive CPET and feel like I got good data. However, they left me alone in the recovery room for a long time and I got tremendous pain from the neck catheter, which stopped when they finally took the catheter out. Lesson: always have someone with you.

    Back home, no one would even look at the data. "We do it differently here." Lesson: stay in Boston until you get useful help.
     
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