The CPET is a test that can be used to document ME and Chronic Fatigue Syndrome. This test may also be called “cardiopulmonary exercise testing,” “V02 max test,” “metabolic/expired air tests” or a “metabolic exercise test.”
There are two kinds of tests: One Day and Two Day. You can learn more about these two different kinds of tests and the pros and cons of each way.
Many people report that this test was a huge help for their disability case. But there is a problem! Actually, there are several problems:
💮 The Two Day test is expensive, far away, and it can damage your health. But it produces a great report documenting your disability.
💮 The One Day test is cheaper, closer, and less risky. But the test is not performed by people who specialize in ME and CFS and it will not include the kind of report needed to be helpful for a disability application.
Lavender Solves the Problem
Lavender came up with a rather brilliant solution to this problem.
Lavender set up an appointment with a local exercise physiologist to perform a one-day test. The test outcomes included data showing Lavender was impaired, but there was no report which explained how this related to Chronic Fatigue Syndrome and none of the kind of information needed for a disability application.
So, Lavender returned to the physiologist and showed her a copy of a sample report from a two-day CPET and requested a report analyzing her test results. Her physiologist did not customarily write this type of report, but she used the sample report as a model and this gave her a better understanding of how to document a CPET for an ME patient, and how to prepare the kind of report that was helpful in a disability case.
By doing it this way, Lavender was able to take a one-day test and get a report that included the same level of detail and analysis that usually only comes with the two-day test. It included level of functioning and an analysis of level of disability.
Lavender paid $400 (instead of $2,000) and did not have to travel to New York or California. She also reported that she did not attempt to do the test to the point of exhaustion, and did not have the same level of negative health impact from the test.
Yay, Lavender! Her approach worked perfectly and she was approved for Total and Permanent Disability through her pension plan. She wanted to share her story to help others.
Great Ideas and Advice from Lavender
💮 The one-day test is available in many local areas. This test is performed by physiologists at many healthcare clinics. It may also be available through a cardiologist, at a local hospital, or through a private sports medicine clinic.
💮 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.
💮 If your local providers are not familiar with the term “CPET” try asking for a “metabolic/expired air test” or a “V02 max test” or a “metabolic exercise test”
💮 You don’t need to do this test to the point of exhaustion. For many people, the abnormalities show up straight away. Once you hit the fat/carb crossover, you have the data needed to demonstrate disability. I think the idea of doing a this test to exhaustion borders on negligence for patients with ME and CFS.
💮 I also have a major concern with the volume of people flying great distances, when this is a test that can be carried out locally. Of course, there are pitfalls to a local test if the test isn’t interpreted correctly, which is what happened to Dahlia.
💮 Chronic Fatigue Syndrome can be measured on two consecutive days. If this is done, the patient will perform worse on day two (due to Post Exertional Malaise caused by the exertion on day one). This drop in the ability to generate energy on day two is unique to Chronic Fatigue Syndrome and has not been documented in any other disease to date.
💮 The one-day test will not show is the reduction in your level of physical functional ability after exertion the previous day. Depending on how ill you are, the second test may be necessary to show how limited you are after activity.
💮 If you only plan to do the test once, you can exhaust yourself the day before the test, so that the test accurately measures your ability to generate energy the day after exhaustion (i.e. is a “bad day” result compared to a good day result).
💮 On the other hand, if you plan to do the test two days in a row, then it pays to be well-rested before the Day One test so that the drop from Day One to Day Two is clear.
💮 If a cardiologist suggests that you do a stress test ask her if you can do a CPET test at the same time. The payback is going to be the same and you may as well get as much data as possible.
💮 The test and report cost me $400, which was well worth it as it could prove I was severely ill. One of my doctor’s wrote something in my medical records that was inconsistent, and without these CPET test results, my disability case probably would have been totally sunk.
💮 Many people have stopped using the two-day CPET test, and some even stopped doing the one-day test, due to the severe health setbacks observed in ME patients. In my opinion, the only safe safe/suitable method is to perform a CPET where you do not exercise to the point of exhaustion, but instead only exercise to the point of fat/carb crossover. I realize that there may be resistance to this from the insurance industry, but making people severely ill is not appropriate.
A Few Considerations for People Applying for Disability in the US
The CPET test is available in many different countries around the world. It can be used for a variety of purposes to measure your health and functioning. In the US, this test is sometimes used by people applying for disability. Here’s a few things to keep in mind if you are using this test to apply for disability.
💮 Article on how metabolic testing by a physiologists
💮 Overview and instructions for of the NASA Lean test, another test that Lavender found very helpful in documenting her condition.
💮 Learn more about the pros and cons of the CPET test
💮 Metabolic testing by Lavender
💮 Demonstrating-orthostatic-intolerance by Lavender
Sample test results from a healthy person:
Sample test results from a person with ME or CFS: