2-day CPET test results (reveals Chronotropic incompetence)

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http://www.zupimages.net/viewer.php?id=17/32/irzw.jpg
Well, as a matter of fact I think I am slowly, very slowly but surely going on a downward slope. I hope it’s only temporary but I definitely feel worse than before.

@Dechi I hope it was a temporary setback and the info from the report was useful to you. I just joined this site and am not familiar with many people's stories yet. Was the CPET worth it, in hindsight? I hope it wasn't a permanent setback :(
 

Dechi

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@delphis I would do it again because it’s a definite and subjective proof of disability. I have recovered from it but my condition is deteriorating in general, apart from this test.
 
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@delphis I would do it again because it’s a definite and subjective proof of disability. I have recovered from it but my condition is deteriorating in general, apart from this test.
Thanks for letting me know about CPET. More importantly, on your condidition, I'm really sorry to hear that. I hope there is a way for us all to improve, and I hope we find it soon.
 

Dechi

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Thanks for letting me know about CPET. More importantly, on your condidition, I'm really sorry to hear that. I hope there is a way for us all to improve, and I hope we find it soon.
Thank you and all the best to you too !
 

Mary

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@Dechi- have you ever tried branched chain amino acids? I started them a little over 4 years ago and they have cut my PEM recovery time in half, as well as giving me a little more stamina. Several people on the board have tried them with good results. If you want more info, I've done posts about them with links to studies showing the effect of BCAAs on something called "central fatigue" which sounds similar to ME/CFS - if you're interested, I can find one of the threads.
 

Mary

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Hi @delphis - here's the first thread I did on this - it was 4 years ago and I've been taking BCAAs ever since: https://forums.phoenixrising.me/threads/bcaas-reducing-pem.34719/

I'm currently taking this product: https://smile.amazon.com/NUTRITION-...ds=bcaas&qid=1552100190&s=gateway&sr=8-6&th=1
taking 8 - 10 capsules a day in two divided doses on an empty stomach (at least half an hour before breakfast and lunch)

@ljimbo423 has had some amazing results with the BCAAs though he's taking quite a high dose -I think around 14 grams a day. I tried doubling my regular dose (regular dose is 4000 - 5000 mg. a day) to around 8000 mg. and it caused insomnia which I couldn't handle, but I do well sticking with 4000 - 5000 mg.
 

Dechi

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Several people on the board have tried them with good results. If you want more info, I've done posts about them with links to studies showing the effect of BCAAs on something called "central fatigue" which sounds similar to ME/CFS - if you're interested, I can find one of the threads.
@Mary thank you I will look at your threads !
 
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Hi everyone,
I did the 2nd day of 2 day CPET today with Dr Keller and her team. I will let you know the results. Everyone was extremely kind and professional, obviously experts at what they do... I will be wearing the Actigraph and documenting some PEM symptoms for another ten days, and after that, I will see a preliminary report, but I'm so foggy and quite wiped out-- I don't remember exactly what will be in the report. I do know that it is going to be helpful for pacing, and it is not a disability report, as that will take a few weeks longer. I will keep you posted, and if anyone has very simple questions, feel free to ask!
all best to you,
delphis
 

*GG*

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Hi everyone,
I did the 2nd day of 2 day CPET today with Dr Keller and her team. I will let you know the results. Everyone was extremely kind and professional, obviously experts at what they do... I will be wearing the Actigraph and documenting some PEM symptoms for another ten days, and after that, I will see a preliminary report, but I'm so foggy and quite wiped out-- I don't remember exactly what will be in the report. I do know that it is going to be helpful for pacing, and it is not a disability report, as that will take a few weeks longer. I will keep you posted, and if anyone has very simple questions, feel free to ask!
all best to you,
delphis
Here is what they wrote for me in 2010. Wonder how it might have changed?

GG
 

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Dechi

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I will be wearing the Actigraph and documenting some PEM symptoms for another ten days, and after that, I will see a preliminary report, but I'm so foggy and quite wiped out
@delphis I did it two years ago and there was no « Actigraph ». What is that ?
 
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@delphis I did it two years ago and there was no « Actigraph ». What is that ?
it's a watch-like device that the subject wears for ten days prior to and 10 days following the 2-day cpet. The Actigraph device measures and tracks activity and rest periods. i'm not sure if it monitors heart rate or other biometrics. It doesn't provide any visible feedback to the wearer, but Dr Keller downloads the data from the Actigraph and uses it for her study. The battery lasts for a really long time, no need for the wearer to re-charge it at all. I'm not sure whether any of the Actigraph data will be available for me to see or my doctor to see in my own reports, or whether it is strictly for the NIH study. I think I will ask the study office though, that's interesting stuff. I'm so foggy.
 

Dechi

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it's a watch-like device that the subject wears for ten days prior to and 10 days following the 2-day cpet. The Actigraph device measures and tracks activity and rest periods. i'm not sure if it monitors heart rate or other biometrics. It doesn't provide any visible feedback to the wearer, but Dr Keller downloads the data from the Actigraph and uses it for her study. The battery lasts for a really long time, no need for the wearer to re-charge it at all. I'm not sure whether any of the Actigraph data will be available for me to see or my doctor to see in my own reports, or whether it is strictly for the NIH study. I think I will ask the study office though, that's interesting stuff. I'm so foggy.
Wow, how interesting ! I hope you post your results !