First let me introduce myself. My name is Billy and I’m a 32 year-old male living in Minnesota.
I was a patient at the Mayo Clinic in 2017. After my visit, I was diagnosed with Chronic Fatigue Syndrome (CFS), otherwise known as Myalgic Encephalomyelitis (ME). I remember thinking after leaving my visit to the Mayo Clinic that how could Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) help my symptoms in any capacity? And surprisingly enough, they didn’t (I tried feverishly to follow the protocol given to me). I found out shortly that the CDC had removed these diagnostic recommendations in September 2017 (after the PACE Trial), and yet these are still up on MayoClinic.Org today – an astounding issue to me for somewhere like the Mayo Clinic, to be considered to be one of the top health care facilities in the world, to still have up as valid.
My experience & care received there was one of marginalization, contempt, and false illness beliefs. It was an embarrassing display to be treated with no basis of science, for an institution supposedly prided on it.
I saw that the Mayo Clinic received $256 million from the NIH in research funding for fiscal year 2017-2018. Of that, from what I gathered, $0 went to ME/CFS Research. How does one of the top health care facilities in the world not even dedicate anything to help with research in this field?
It’s time for the Mayo Clinic to start taking ME/CFS as seriously as those suffering from it have to take it every day. I have always been so proud to be from Minnesota, to have the perception of the healthcare that we have provided here, and the Mayo Clinic was always a big reason for shaping that perception. However, after this experience it leaves me with great sadness to live in a part of the country where it seems we want to play no role in trying to advance this research & Mayo Clinic specifically thwarting process.
May the shameful walls of exclusion for ME/CFS & post-viral sequelae by the Mayo Clinic finally come crumbling down after the tragedy that is Long COVID. It’s high-time it did.
Thanks for reading this.