Humans of ME/CFS
My name is Alice. I am an athlete, an exercise specialist, and someone who has lived with ME/CFS, or whatever it’s called, since 1992.
Professionally, I am a Registered Nurse with a degree in Kinesiology and I once held an Exercise Specialist Certification from the American College of Sports Medicine. I worked professionally in Graded Exercise Therapy and provided education on lifestyle changes.
As a cyclist, I had bicycled more than 10,000 miles over four continents and across 30 of these United States with a goal of cycling on all seven continents and all 50 states. I was on the brink of cycling becoming my full-time job when ME/CFS struck.
It took ten months of testing under nineteen specialists to diagnose. I’ve had three major relapses, the last one in 2004, leaving me unable to maintain even part-time employment. ME/CFS has completely wiped out my ability to be productive- as defined by society. It is devastating enough to have my body working against me with this disease, but the added burden of the healthcare system and society working against me due to a poor understanding of CFS is thoroughly demoralizing.
ME/CFS is one disease where the onus for healing is placed completely but inappropriately on the patient. I have applied my professional knowledge as a nurse and exercise specialist into trying to understand my disease and help myself. However, the complexities of ME/CFS and the broken pathways at the cellular level have made this impossible.
Through 25-years of trial-and-error, I now know that a limited ability to exercise followed by not knowing when I can get out of bed again makes graded exercise therapy futile.
The PACE study and its recommendations for cognitive behavioral therapy and graded exercise are an excellent example of misguided care for ME/CFS. The deficiencies in the methodology and the inaccurate reporting of results are becoming well known. However, the UK’s National Health Service, the CDC, Mayo Clinic, and Kaiser Health Systems have all recommended these therapies for CFS based on the PACE study.
Yet there is hope. In contrast, the Work Wellness Foundation’s two-day testing protocol for disability is very applicable to evaluating patients with ME/CFS. If I had been tested with this protocol and evaluated appropriately for my diagnosis, I would still have insurance.
When ME/CFS struck, my ordinary life ended and my dreams died. Because of my deep Christian faith, one of whose tenets is “to the extent that I could do anything, I could serve the Lord,” I have chosen not to accept society’s definition of me as an unproductive member and I have found ways to serve others. I founded a non-profit organization, His Wheels International, that promotes the design and building of hand-pedaled tricycles. I have written two books, encompassing my ME/CFS condition while continuing to find meaning in my life within the limits this disease has placed upon me.