Of all the tests I took when applying for disability, the 2-day CPET was the worst.
It caused me to lose about 10% of function afterwards. That was two years ago.
It took me a while to decide to do the test. I was applying for LTD (disability through my employer).
First, I tried trying to get benefits by submitting a tilt table test, and that didn’t work. So I needed to find further ways of proving I was ill.
Traveling to Ithaca was difficult. My sister had to fly in to accompany me because I can’t manage on my own. We booked to be there a whole week in case I collapsed afterwards. So, it’s definitely a huge commitment to try and get this tests done.
The CPET involves pedaling on a stationary bike till muscular exhaustion — for me about 8 minutes total — while being hooked up to a machine which measures your oxygen and carbon dioxide, to reveal your anaerobic threshold.
I nearly blacked out in the cab after doing the first day test. The second day of testing, we were more careful. I rested for about 30 minutes in the facility after to recover.
The CPET report is very good, as it can show severe physical disability. However, I don’t think it is about one particular test, more about the whole picture of your medical records. The test cost about $2000. It is available at Workwell in California, Open Medicine Institute in California, and Betsy Keller in Ithica, NY. Betsy Keller and her team were amazing — very compassionate and helpful.
This test should only be done with knowledge of the risk, and weighing up how one may cope if severely impacted by taking the CPET. Most patients seem to have only a temporary crash from it for a few weeks or months, and don’t lose permanent function. For me it was a huge loss of function that became apparent in the month following the test.
I survived only with major support from my family who took over all the cooking and were able to care for me while I was bedbound.
Iris reports: “It is now three years since the CPET. I’m still not back to pre-CPET baseline. I’m not as ill as I was immediately afterwards, but I’m still not able to do the things I could do before the CPET (look after myself, cook for myself, etc).”
Some people report good experiences with CPETs and some people report bad experiences. Read more: Real Life Stories from People Who Had CPETs
Pros and Cons of Getting a CPET
Read About All Four Tests Iris Took
A Long Long list of Tests for ME and CFS
What Do You Think?
Updated July 2018. Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working.
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