At first, I had a one-day CPET done locally. The results were interpreted that I was “deconditioned” but not “disabled”. Actually hurt me more than helped.
After the CPET, I was approved for Social Security Disability — mostly because of neuropsychiatric testing. But I was cut off from LTD (disability through my employer).
To appeal the employer disability, I went to Workwell for a 2-day test. Snell is one of the therapists there that has spent career studying Chronic Fatigue Syndrome and helped to design the two day CPET specifically to help document the extent of disability and the severity of the crash that happens on day two.
The only diagnosis that has the two-day crash is Chronic Fatigue Syndrome, so this helps to rule out other fatiguing conditions. It tells you at which point your body ran out of oxygen in tissues and switched from aerobic respiration to anaerobic respiration. It’s what happens at the end of a marathon for healthy people.
We have this happen after very little exertion. Then once they have these details from the report they can write up the report with examples of how basic activities like getting ready for work and driving to work can already push us into a crash. Also compares to other illnesses with similar impairment like heart disease. They do this because the disability guidelines for heart disease are very very clearly spelled out in terms of what levels are accepted as severe disability.
It is well worth it to have WorkWell do the CPET for the report quality alone. Otherwise you risk some dipshit interpreting the results improperly and saying you’re just a lazy out-of-shape couch potato.
Workwell Foundation started as a joint project with the Stockton University physical therapy and exercise science dept. Chronic Fatigue Syndrome was the research focus and they started to develop these tests and publish enough data to get it accepted as a gold standard for Chronic Fatigue Syndrome disability assessment. They grew big enough that it had to break away from the university and become its own foundation. They are very helpful.
The first time I did it, it was incredibly helpful. They made me wear a heart rate monitor 24/7 for a month and it would alarm if it went over my aerobic threshold. Any activity that raised my heart rate over 100 bpm needed to be identified so I could learn to better pace myself and not constantly crash from over doing it. Sustaining heart rate over 100 bpm for me caused a switch to anaerobic respiration due to low oxygen in tissues and produced lactic acid which led to pain all over.
This was very very useful. It taught me also to identify the signs that I was approaching that threshold so I could identify on my own when not wearing the heart rate monitor.
The downside is that this test can cause a serious crash. This last time I went, I was in such bad shape that my doc advised me not to do it. He was worried I’d lose ground permanently. I did not want to risk losing my disability and knew that if my CPET was similar to the earlier one that would make them all get off my back about disability recertification.
It did help but I did really struggle to recover. This is why it has not been listed as the required testing to diagnoses Chronic Fatigue Syndrome, too hard on patients and may be detrimental in the long run.
💮 The CPET is a test used to document Chronic Fatigue Syndrome. There are two kinds of CPETs: One day and two day. How to Get a CPET (maybe)
💮 Dahlia used her CPET to help win her disability through her employer. How Dahlia Appealed (and won!) Her LTD Case
💮 Iris also used her CPET to win her LTD How Iris Got a CPET