Coming home one evening in October, I realized that despite everything that happened, I felt grateful. After being stuck inside for months, I could get out again, I was still in school, I could still study, I could still bike. The air was cold on my skin, but I didn’t want to go home. I wanted to hold onto the feeling for as long as possible. I thought about the other patients, many who can’t speak, or leave their homes or see the light. There are so many others not as lucky. Months later, I’m still grateful every time I bike home. I almost lost these things. I could lose them again, but I have them now and I am savoring that.
This is a positive advocacy story since I do not have many. When I saw my hematologist last Spring she said at first I had mono. I said I wasn’t positive for active mono. I’d been to other doctors and been tested many times. She looked me up and down, paused, and said, “well… you’ve got it somewhere.” At the next appointment when I still was not better she stuck to the virus theory but then said, “unless you believe in Chronic Fatigue Syndrome.” Continue reading “A story about one of the good ones”
I’ve been feeling a bit better this past week. It’s such a nice change. I have no idea how long it will last but I’m grateful for any moment of improvement. Today somebody asked me what city I plan to live in after I graduate and I was able to answer honestly. Normally this question really hurts my feelings because I don’t know if I’ll be able to graduate. I don’t know if I’ll ever be able to work or live on my own. But today it didn’t. A professor at my university asked if I wanted to be in an ME study and I thought, “if my symptoms are getting better will I still be able to provide valuable data?” Continue reading “Partial Remission?”
This coach describes the Karolyi Ranch as a house of horrors where abuse extended far beyond Nassar and she describes the culture that enabled it. Watching the testimony today was one of those things where you think you know what it’s going to say but then the accounts are totally different. It’s worth watching to understand how it happened and how we can stop it.
Talking with a friend about this today they said the Nassar case was so extreme that it doesn’t make sense to tie it into any other movement, the #metoo movement, or otherwise. I’m not so sure. I do think his actions were far out of the norm, but what isn’t out of the norm is that none of his victims were believed. The first reports surfaced decades earlier. He could have been stopped years earlier, if someone had listened.
Jen Brea sums up how we all have been feeling in the most elegant way possible. Crawley never responds directly to criticisms of her work or ideas. She paints herself as the victim because people have dared to question her. Brea says simply, “This is the internet.” We all have been harassed, yet we don’t use that as an excuse not to defend our ideas or engage with the other side. Professor Crawley paints herself as being silenced, yet is interviewed in almost every single article about ME. It’s long past time that ME patients have the opportunity to share our stories. Thanks Jen Brea for helping elevate our voices.
The discussion is worth reading in full, and is broken up into two parts:
I've made a practice of not publicly calling out Esther Crawley in part because the issues we face are so much bigger than any one researcher.