Hey guys. The above link takes you to a petition to get Merck to be held accountable for pfs. No idea if it’ll actually do anything, but most of us cry about how we’ve been suffering and “no one is doing anything.” Well guys, you and I are the very people who are doing nothing. We each need to start coming up with ideas and plans. I’ve already lost a year and a half of my life to this and I don’t have any more time to waste. We can’t simply rely on the few (shoutout to @Greek @Sugarhouse @awor @axolotl and any others I’ve forgotten) to get us through this.
Please take a second to sign the petition and share it too. Let’s see what happens once we meet their goal. It has already garnered over half of the signatures it aimed for. Please please send this to family members and friends. Let’s show them how strong this community is and how many people are suffering so we can start to make some actual progress.
Let’s please start working together to let everyone know pfs is, in fact, real and that we are taking actionable steps to hold people accountable and begin rectifying our situation.
I’m as scared as all of you about the potential embarrassment and backlash of speaking out about this. I’m working on it myself, but the time of silence is long past. Those with HIV and fibromyalgia (a disease that doctors thought was just “hysterical women” that we now know is caused by issues with central pain processing in the brain) were embarrassed, denied, and downtrodden at the beginning too. No one is coming to save us. It has to be us, saving each other.
Edit: Thought I’d add in that when I found the survey, it had 1,066 signatures.
It’s currently up to 1,078.
Edit2: It’s at 1,131