Speeches from the Front Lines of #MillionsMissing: Terri Wilder

My name is Terri Wilder and I’m a person living with ME.
I was only diagnosed with ME about twelve weeks ago so it feels a little strange for me to be here today and introduce myself this way……
I typically introduce myself this way:
“Good Afternoon, I’m Terri Wilder. 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. I’m fairly certain that many of the government workers walking in and out of this government building today have heard of ACT UP.
While I have only been diagnosed with ME for twelve 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 —-people told me that nothing would happen if we came today to Washington, DC to protest. Nothing would change and 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 twelve 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 the chronic fatigue  syndrome advisory committee, CFSAC, actually had something in her bio on the womenshealth.gov website that actually gave me a clue that she has 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.
 

Facebook
Twitter
WhatsApp
Email

1 thought on “Speeches from the Front Lines of #MillionsMissing: Terri Wilder”

Comments are closed.

Latest News

DHSC released a new progress Report

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue. This is dated from December 2022.You can read the full report using the link below: DHSC Information Bulletin Dec 22 FINAL MECFS updated

Read More »
Gold fireworks lighting up over a black background. The words, TOP HITS 2022 is in the center in white lettering. the words: #MEAction accomplished a lot last year is undernether with the #MEAction logo

Let’s Look at #MEAction’s Top Hits from 2022

As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished in a very busy and exciting 2022! There are so many wins to share, so we decided to narrow down the list to our TOP HITS! ——————- #MILLIONSMISSING 2022: * Bringing together the powerful Virtual #MillionsMissing

Read More »
A photo from Millions Missing Scotland of a group of 20 protestors outside the Scottish Parliament. They’re looking serious and holding signs that say Millions Missing, and a pledge signed by MSPs. Many are wearing red ME Action t-shirts. A yellow icon of a person is overlaid next to them with an arrow pointing to it and the words ‘Could it be your MSP?’ A red banner along the bottom says ‘Share your story and ask your MSPs to stand up for people with ME.’

Ask your MSPs to stand up for people with ME

Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February – and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top