To Whom it May Concern,
At first when I tried to start writing this, I worried that there was no point. What purpose is there is writing about a problem without having any kind of conclusive solution to end with? As an English major, I am used to making everything add up into a moral and end my papers with a rallying, exclamatory paragraph that I treat like a key to all problems in the world. I pretend that my insights have clarified more than just the novel I was writing about.
I recently wrote an article on Chronic Fatigue Syndrome because a professor at Stony Brook University has received a grant for the research he is doing on a home-based treatment program. I brushed up on who he is and got a general idea of what his program is about. I learned what I could in a space of about two days and formed a vague idea that I agreed with his outlook: if people are too ill to leave their homes in order to get treatment then a program designed to be performed by oneself in one’s home is a good solution.
After the article was published online I began receiving emails telling me that people were commenting on my story. I was startled to see a less than subtle common thread running through the responses. A majority of the comments were from people suffering from CFS, and every one of them demanded to know why the National Institute of Health was funding another of this “type” of project, as opposed to aiding those who are researching a biomedical treatment option. In other words, they stated that yet another program to make their symptoms more manageable was not the cure they called for.
Clearly, my thorough research had left me without an important bit of context. The comments made reference to other treatment programs that had similar goals to Professor Friedberg’s, including a trial in the UK that, the commenter proclaimed, was unsuccessful. Another response speculated that perhaps more funding would be given to finding a cure if CFS were seen as a cause of death.
I don’t suggest that I am an authoritative voice on this issue. However, I was blown away by the vehemence of the reactions my article provoked. I had the humbling experience of realizing that my ability to peek into another person’s reality, write 500 words on it and be done with it, was my luxury. I modestly stand by one of my initial reactions that perhaps both treatment types should be funded, and that Professor Friedberg does not intend his program to be a permanent substitute for a biomedical cure. I recognize that there must be an unfathomable level of frustration felt by people whose lives are altered by CFS and believe their voices to be unheard, or even ignored.
I was reminded, perhaps simple-mindedly, of another research project I had done on autism. In my studies I found a book called “Emergence: Labeled Autistic” written by a woman with autism who presented an outlook radically different than anything I had seen before. She suggested that children with autism should be looked at as having a different perspective, rather than an illness. She was a major activist for a school of thought that dismissed studies for cures of autism as being narrow-minded, even cruel. I was 14 at the time and perhaps the idea of a societal outcast being defended resonated with me. I interviewed one of my teachers who I knew had an autistic son. When I asked what he thought on the matter he looked at me strangely and said that he would do literally anything to find a cure for his son. I will never forget the words he wrote over his picture in my middle school yearbook: “find a cure someday.”
At first when I started this piece, I felt unsatisfied with the fact that I would not be able to come up with a neat resolution to the problems I would present. I felt that if an issue has no clear arrows pointing to a reasonable fix, then why discuss it in the first place. Won’t I just be spewing words? The importance, I now realize, lies in whether or not those words are heard.
Latest posts by Marcela Maxfield (see all)
- Review of Squirm Burbee: A Vaudevillian Melodrama - November 15, 2011
- Letter on Chronic Fatigue Syndrome Concerns - November 14, 2011
- Stony Brook’s Friedburg on $600,000 Grant for Studies in Chronic Fatigue Syndrome - October 31, 2011