How to Get a CPET (maybe)

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artwork: Robin Mead

The CPET is a test used by some people to document Chronic Fatigue Syndrome. There are two kinds of CPETs: One day and two day.

Two-day CPETs are run by the Workwell Foundation in California and by Betsy Keller in Ithica New York. It is not covered by insurance and generally costs $2,000. Some people report that the exertion caused short-term or long-term health damage. See below for readers stories.

One-day CPET is a test you may be able to get locally from a cardiologist. It may be covered by insurance. However, it does not show the same results as the two-day, and the report may not include the level of detail needed to be helpful for disability.


IS THE CPET THE GOLD STANDARD?

Quite a few places online write that the two-day CPET test is the “gold standard” for getting disability. I don’t think there is an actual gold standard measurement, so I’m just going to give my opinion. Here it is:

💮 For disability through your employer (also called LTD): Many people report that this test was very helpful and key to winning their case. I do not know enough about LTD to have an opinion.

💮 For disability through Social Security: A few people have been kind enough to show me the results of their two-day CPET tests. The test reports that I saw were not performed or signed by an acceptable medical source. For Social Security, this is a big deal. In my understanding, this test could still be extremely helpful if the test results are used by your doctor or if they match other things written in your medical records.

💮 What to do if your CPET shows good results, but it is not signed by an acceptable medical source? If you have a doctor back home who is an acceptable medical source, it may be a wonderful help if your doctor can review the CPET results and mention these results in your treatment notes or (even better) in a letter or an RFC form. This has the potential to be really excellent medical evidence. Without written support from a doctor, the CPET test results may still be very helpful for your case, but it is not guaranteed.


CPET STORIES

Important to keep in mind: If you meet someone who says a CPET helped their case or won their case, make sure to ask what type of disability they were applying for. Long Term Disability is different than Social Security and has different rules.

💮 “Of all the tests I took, the 2-day CPET was the worst. It caused me to lose about 10% of function afterwards.” Read Iris’ story of how she took the CPET and everything that happened: How Iris Got a CPET

💮 Dahlia got a both one-day CPET and a two-day CPET. The results were very different. Here’s how they turned out for her: How Dahlia Got a CPET

💮 “I did the 2-day test with a cardiologist. That was just under 2 years ago and I’m still not recovered from it.”

💮 “I did the two-day CPET. The information I got is very valuable — especially for showing my regular doctors who don’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.”

💮 “If your test is all in one day, you can do something the day before so the test.  Chronic Fatigue Syndrome should be measured over two days.  Most facilities don’t understand Chronic Fatigue Syndrome and only measure one day. If you are taking a one-day test, you can always exert yourself the day before the test, so that the test more accurately measures according to the Institute of Medicine standards.”

💮 “I did the two-day CPET, and have had a permanent loss of function. It wasn’t immediately apparent after the test, but it became apparent as I tried to do things I used to be fit for like sitting and standing for longer periods, preparing a meal, or going out for lunch. Now I am housebound and mostly bedbound.”

💮 “I did the 2-day test Ithaca College. 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.”

💮 “The 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.”

💮 “The one-day CPET test is available in most local areas. This test is performed by physiologists at many healthcare clinics. These tests are used as a clinical exercise assessment to assist in setting up pre-training or weight loss regimes. When a person with Chronic Fatigue Syndrome takes the test, the results are so unusual that the physiologist may think their equipment is broken. The CPET tests are also called “metabolic/expired air tests.”

💮 “For many people, the abnormalities on a CPET show up straight away. I think it is worth considering that continuing the test to exhaustion may not be really necessary. In some cases, one day of tests is enough to show strong results.”


Reader’s Report: Two Day CPET vs One Day CPET

💮 The advantage of the one-day CPET tests: they may be covered by insurance, they may be available in your local area, they may be performed by a cardiologist (an acceptable medical source for Social Security).

💮 The disadvantage of the one-day CPET tests: The test results will not show that your ability to function got worse the day after exercise (post exertional malaise). In mild or moderate cases, one day of test may not show strong results. Also, they may just be raw data and may not include a report that analyses your results.

💮 The advantage of the two-day CPET: May include a report analyzing the test results, stating whether the results show the person is disabled, and describing the person’s limitations. Also, the test may show your symptoms were worse the day after exercise (post exertional malaise).

💮 The disadvantage of the two-day CPET: Expensive, far away, greater health risk, may be performed by an exercise physiologist (not an acceptable medical source for Social Security).

💮 Here is a sample report from a two-day CPET. From a different patient, here is an example of an outcome from a two-day CPET test: 

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