About seven years ago the Mayo Clinic diagnosed me with chronic fatigue syndrome and promptly send me to their three day class program. Everyone but me in the room was there for chronic pain reasons; I was the only one with Chronic Fatigue Syndrome. Despite that fact, we were all treated the same. And that meant that I was instructed daily on how important exercise was in my “wheel toward recovery.” Daily we did stretching exercises and I was sent to a PT to put together a plan for graded exercise. Being new to the disease, I was excited that the mountain climber in me was not going to be lost. I was going to be able to exercise my way back to my former physically strong self. I quickly learned once I got home that this was a #fail. I only got sicker and more exhausted with even a few minutes of exercise. I ended up doing some reading on this and learned that this was but one of the protocols that the Mayo’s chronic fatigue clinic engrained in me that would not only do more harm then good in the instant, but push me along the spectrum of getting a more severe level of chronic fatigue syndrome.
Years later, and not wanting anyone else to go through the harmful treatment that Mayo gave me I formed the MN MECFS Alliance. As Vice President I set up a business meeting with the clinic manager. She had never heard of Unrest and said that while we presented our facts very well, that it was up to the doctor that oversaw the clinic to make any changes. We were denied access to the doctor. She did give us a handful of documentation that the doctor relied upon for his stance on CBT and graded exercise for CFS. Much of it wasn’t even related to CFS and the rest was outdated, per review by clinical experts and contrary to the CDC. I offered the Mayo the opportunity to speak to MECFS experts but they denied the opportunity. I said I had backing to help make them a Center of Excellence for MECFS and they said they weren’t interested; they said they had enough patients. I asked how their patients did after they went home (as I’ve heard stories of many becoming bedbound or wheelchair bound after following their advice). They said they didn’t follow-up with their patients. I gifted them a copy of Unrest. I don’t know that it was ever watched but it freaked me out that they hadn’t heard about this award winning movie about MECFS when they ran a clinic for it.
I can only thank goodness that I didn’t rely solely on the medical advice of the Mayo and that I listened to my body when it felt worse after exercising, when CBT (with the therapist trying to tell me I could think my CFS away) that I read the current treatment protocols for CFS and learned that both of these things promoted by the Mayo have proven not only not helpful, but harmful to us.