Petition to get Merck’s help with research

Science PFS Research
#1

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

4 Likes
#2

@JustTrynaMakeIt shared. I’ve got people saying it won’t accept the zip code I’m UK based I’ve sent it to quite a few . I’m getting a lot of people having the problem with the zip code. We could lose a few signatures. It must not have took mine either

#3

Ah that’s weird. I’m in the states so maybe it’s limited only to here. I’ll see if I can contact them and get this fixed- will update here

#4

Cheers I’ve got lots waiting

#5

I’ll sign this because I think more visibility is a good thing.

1 Like
#6

@Greek let me know if u get around/passed the zip code

#7

90210 - Beverly Hills!

2 Likes
#8

Spot on

#9

Great that you guys found a workaround already- love it!
Just to keep you in the loop, I was able to contact the survey creator through the website and fired off an email. Just waiting to hear back. I’m also seeing if they’d be willing to share their goals after the survey reaches its goal and if they’re open to help on that.
Keep the good energy going!

1 Like
#10

We’ve got a few dropping in

1 Like
#11

I won’t accept Canadian zip code either.

#12

Hm…still haven’t heard back from them. For now, maybe just use a random one?
60611 is in Chicago.
@anjikyuzan

#13

only 1000 people？

#14

Merck helping PFS victims would be an admission their product causes harm.

I think hell will freeze over before they help any of their victims.

3 Likes
#15

I think so

#16

That’s one way to look at it lol. Do you have any ideas that you’ve implemented to change our current condition?

1 Like
#17

I agree, but once you start getting signatures and snowballing this into a bigger issue with names behind it, this becomes more about forcing them to admit it and making the public aware that their product does, in fact, cause harm, and very likely so in a far greater percentage of men than they indicated.
Then you’ve got a solid base of support with which to start getting in touch with people to effect change, not necessarily through Merck. But with actual individuals behind you, lobbying congressman to effect change, appealing to researchers to look into the condition, or, the biggest goal, gaining actual NIH funding for a project, starts becoming a lot more doable and realistic, no?
Given enough public pressure though, who knows, they might even engage in research just to save face. Obviously unlikely, but I prefer to think of the positives and actually do something rather than just bash an idea, you know?

3 Likes
#18

I agree but like I said:

1 Like
#19

For all non-americans who want to sign:

2 Likes
#20

Is the signature still valid with a random postal code?
Maybe they ask the bear minimum for a petition to be valid.
Never really understood how online petition could work.
One could pretty much use fake email address and name and loop / automate the process and get infinite number of signatures…no?