How to Get a CPET (maybe)

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artwork: Robin Mead

The CPET is a test used by some people to document ME and Chronic Fatigue Syndrome while applying for disability in the US.

It can also be called a “metabolic/expired air test” or a “V02 max test” or a “metabolic exercise test” or “cardiopulmonary exercise testing.”

CPETS are most commonly used for LTD (disability through your employer) and many people find them to be very helpful for this kind of claim.

CPETS are sometimes used by people applying for Social Security or other forms of disability.

Some people are very happy with their CPET test, and other people have health damage from the test. Please learn more and think carefully before making a decision.

There is a common misconception that a two-day CPET is an “automatic approval” for disability. This is not true and some readers here got this test, had test results showing severe disability, and were still denied.ย There is no such thing as a “gold standard” or “automatic approval” for disability.

If you are applying for Social Security, it is especially important to keep in mind that they will be considering your entire case file. The decision will not be made based on one test result.

One Day and Two Day CPETS

There are two kinds of CPETs: One day or two day. Both have distinct advantages and disadvantages.

๐Ÿ’ฎ One-day CPET is a test you may be able to get locally from a cardiologist or an exercise physiologist. The Pros and Cons of a One Day CPET

๐Ÿ’ฎ Two-day CPETs are run by the Workwell Foundation in California and by Betsy Keller in Ithica New York. The Pros and Cons of a Two-Day CPET

๐Ÿ’ฎ A third option: Lavender brilliantly figured out how to get the best of both worlds: Lavender Solves the Problem of the CPET

Reader’s Stories of Two Day CPET

Reports from readers who took a 2-day CPET at the Workwell Foundation or Ithica:

๐Ÿ’ฎ โ€œOf all the tests I took, the 2-day CPET was the worst. It caused me to lose about 10% of function afterwards. That was several years ago and I am still not better.โ€

๐Ÿ’ฎ “I sustained permanent, severe damage after the two-day CPET test. The results helped me win back my employer-sponsored disability benefits but… destroyed my health and life. I had no information about the true dangers or what to do to protect myself afterwards. Total disaster.”

๐Ÿ’ฎ “I did the 2-day CPET and was approved for disability soon afterwards. I had a three-week recovery period. It was definitely worth it for me.”

๐Ÿ’ฎ โ€œI did the 2-day test. That was just under 2 years ago and Iโ€™m still not recovered from it.โ€

๐Ÿ’ฎ โ€œI did the two-day CPET. The information I got is very valuable โ€” especially for showing my regular doctors who donโ€™t understand this disease. BUT, I crashed pretty bad after the test and it took a long time to recover. I wish there was a better way.โ€

๐Ÿ’ฎ “It was absolutely worth the risk to have the testing done. I did eventually return to baseline, and the information on my anaerobic threshold is helping me with the difficult process of pacing. I also have the report in the event that I need it for disability purposes. I thought it was definitely worth the expense, the risk, and the long recovery process.” – Jennie Spotila has an excellent long article describing how she took the test and how she has used the results.

๐Ÿ’ฎ โ€œI did the two-day CPET, and have had a permanent loss of function. It wasnโ€™t immediately apparent after the test, but it became apparent as I tried to do things I used to be able to do. Now I am housebound and mostly bedbound.โ€

๐Ÿ’ฎ โ€œI did the 2-day test. It was very valuable for obtaining proof of my level of disability and I was able to win my appeal for Long Term Disability. It was extremely hard on my body and the crash was awful, needing 2 nights of IV hydration to make any progress and I have never returned to my level of functioning that I had before the test. If you can get benefits without it I would consider that route first.โ€

๐Ÿ’ฎ “I was not applying for disability. I did the 2-day CPET just to get more info about my health. The staff were extremely knowledgeable and I did find out some useful information. My condition was not severe, so I think I handled the test better than other people, but it still made my symptoms worse for about three months. It was miserable. If I had to do it again, I would look for other ways to get health information.”

๐Ÿ’ฎ โ€œThe 2-day CPET helped me win my disability case, but doing the test put me in such a horrible relapse it took over 3 months to get back to baseline. It really sucked.โ€

Learn More

๐Ÿ’ฎ There are many other options for How to Get Tested for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

๐Ÿ’ฎ Here is a sample report from a two-day CPET.ย 

๐Ÿ’ฎ Here is an example of an outcome from a CPET test:ย 

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