My brother was a long-distance runner, A+ student, musician, and social butterfly who loved to spend his spare time outdoors and woodworking. But my brother got too weak to go to school when he was 17 years old. Thankfully, he was one of the lucky ones who got a diagnosed for ME/CFS within only a few months of not feeling well—for many patients it takes years upon years to receive a diagnosis. But he did not want to accept that he would feel sick and be house-bound for the rest of his life when only a few months ago he was running miles in the mountains with his best friends. So, he asked our mom to do intense diagnostic testing at the Mayo Clinic with the hope that his diagnosis was wrong, or that they would find something they could treat. No one in the family was nervous about him going; we were all anxious for more answers and to find ways to help him.
My brother walked into the Mayo Clinic on his own two feet, albeit slowly, in January 2019. The testing was quite extreme, with some tests requiring him to stand for long periods of time. The testing days would have been tiring for anyone but for someone with ME/CFS, they were catastrophic. By the third day, he was too weak to sit up on his own and a nurse tied him up in a wheelchair with a bed sheet. He was too weak to leave the hospital, so he was admitted for the night. And under the careful eye of his 8-doctor team, he lost the ability to urinate, move his fingers and toes, and even swallow. When I got there the next day my brother told me, “All I remember is being too tired to keep breathing.”
The next few days were a blur with doctors in and out and with us attending to my brother’s every need. One moment I will never forget is when a few doctors came in to check on him. One was recommending a month-long rehabilitation program the Mayo Clinic has that she said would build his strength by having him exercise more and more each day via a program called graded exercise therapy. I asked her, “How have patients with ME benefited from that program?” She replied, “What is ME?” She was holding my brother’s chart with his diagnosis in it.
Within a week my brother was discharged from the hospital. He went home and attempted to rest and recover. But unfortunately, he never did. He has not walked since he walked into the Mayo Clinic. He has not stood on his own feet in two years. Nor has he has sat up without the support of his wheelchair. Even with his chair supporting him, he can only stay seated for a few moments.
Every day, we hope that one of the highest-ranked hospitals in the country will be able to do more good for ME/CFS than harm. And every day, we hope that my brother will someday walk again. But we understand that to get to those moments, we must keep fighting to bring awareness to everyone.