Editor’s note: Terri Wilder made these remarks at the May 18, 2016 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission. For new readers, ME refers to myalgic encephalomyelitis, a neuroimmune disease.
Good Afternoon. My name is Terri Wilder and I’m a person living with ME.
I should tell you that I was only diagnosed about ten weeks ago so it feels strange for me to introduce myself to you this way as I typically introduce myself this way:
“Good Afternoon, I’m Terri Wilder and I’m an AIDS Activist and a member of ACT UP/NY.”
Yes, that ACT UP–the AIDS Coalition to Unleash Power. The infamous activist organization that shut down the FDA, demanded that the CDC change the definition of AIDS to include women specific illnesses, and stormed the NIH. If you worked in government for any length of time I’m fairly certain you have heard of ACT UP.
While I have only been diagnosed with ME for ten weeks, I can tell you that it didn’t take me very long to figure out that we are repeating history with ME. I have told multiple people that I’m having déjà vu. You see, I have been working in HIV since 1989.
One of the reasons ACT UP was founded was because health officials, government researchers, medical bureaucrats, medical providers and pharmaceutical company executives believed they were the “AIDS experts” when in fact the experts were the people living with AIDS. The persons with AIDS points-of-view were made invisible and their real-world knowledge about the changes that needed to be made to end the crisis, was ignored.
I need to be honest with you and tell you that people told me that nothing would happen today if I gave public comment. Nothing would change and that the government would continue neglecting people like me with ME as they have for the past 30 years by throwing us a few crumbs.
For the past ten weeks I have had two things on my mind—how long am I going to be able to hold on to my job so I don’t lose my health insurance and how could government institutions like the NIH, CDC, HRSA, and FDA repeat history by doing nothing for the millions of people who have this disease?
If I end up really sick in the next few months or years it will not be because the disease or its complications made me sick.
If I’m getting sicker from anything I will be getting sicker from the sexism and pyschogenic views that are so deeply entrenched in this disease, I’ll be getting sicker from the CDC for pushing unexplained fatigue definitions and putting incorrect information on their website about ME, I’ll be getting sicker from the neglect and disdain that has driven away researchers and pharmaceutical companies that could discover a treatment for my disease, and I’ll be getting sicker from government committees that won’t allow people like me (with ME) to sit at that table and help inform policies and programs that might actually save my life. We have a model allowing people like me at the table—people just refuse to use it. I know this because my friends with HIV have a seat at the table.
So how many people are dead either directly or indirectly from this disease who might be alive today if research had been done to develop drugs for ME?
Would they be here today if the government took this disease more seriously and established ME Center’s of Excellence around the country? Would they be here if the government invested funding to the tune of $250 million vs. 5-7 million? Would they be here if the designated federal official for this advisory committee actually had something in her bio on the womenshealth.gov website that actually gave me a clue that she actually had some commitment to ME? The name of the disease can’t be found anywhere in her bio.
So—-how many lives?
Someday, this will be over. Remember that. And when that day comes, there will be people alive on this earth who will hear the story that once there was a terrible disease in this country and that a brave group of people stood up and fought and in some cases gave their lives so that other people might live and be free.
I’m having déjà vu……. and I don’t want history to repeat itself.
If you work for HHS, the CDC, NIH, the FDA or any other government agency—– write down my name.
My name is Terri Wilder and I don’t want my tombstone to say I died of government neglect.