If we keep pushing and come forward about this issue we will win.
Ya was really great to see this today. The tide is beginning to turn.
Pretty good to see this mentioned by someone with such a big social media presence and to see so many reply with frank accounts of their experience.
This is quite a big “drip” in the drip, drip, drip of building pressure. Or a bigger one than I can remember on twitter, at least.
Unfortunately, it will go in one ear and out the other for many viewers. Most people just plain do not care unless it happens to them or someone they love. I believe that could change. People would need to hear about it, read about it, think about it, and talk about it enough to start to care let alone stand up. Such would require someone prominent regularly airing the issue. Heck, even the doctors people here go to tell them it is “in their head” and such. They don’t say that to their baby/toddler patients.
Someone I know goes on and off zol/ser (I won’t spell it out or punctuate the first letter because it does not deserve it, so hopefully you know what I refer to) for years to treat his “anxiety when it gets too strong” and he gets “sexual side effects that always go away when stopping”. He had the audacity to suggest I take it for an unrelated condition, to which I told him about PsSD, to which he sounded surprised and basically told me he didn’t believe it. Trazohells friend who informed us of his passing said themselves: “I am one of the lucky ones who can go on and off antidepressants and also neuroleptics like candy”.
I knew about PsSD and PfS (the grammar errors are intentional since the words are swear/dirty) before all this, but I didn’t know about PaS (ignore the bad but justified grammar error) or a certain palm tree. I still cared and mourned for the victims. Many patients at the facilities I worked at were allergic to antibiotics in the penicillin family, but I cared even though I am not allergic. I feel like they saved my life, even though others react badly, yet I don’t go on forums and try to discredit those with different experiences. To work in the nursing field like myself, you have to have compassion.
You really need to stop demoralising people here. We need to encourage people to reach out for fundraising and awareness raising. Messages such as these do not help.
I do not know what you are talking about.
Telling people here no one cares about us is both false and demoralising.
I did not say “no one cares”. Reread the key word I said: *Most. I maybe don’t need to say that because I’m sure the majority of people here agree. I’m allowed to vent, right? I stand by what I said, and as much as I don’t want to feel that way, I do. So many people in real life I talk to do not seem to care unless they or someone they love is affected. I acknowledge it’s just a bunch of words to some people, and that my words don’t expedite research or awareness, nor will they hinder or halt it, but I’m not looking for an argument. I would apologize if my words offend you, except I do not see how I said or did anything wrong. There is more than enough division in the community; there is no need for anymore. We should all be on the same team, so the last thing I want to do is argue with my brothers/sisters. We can all be more productive than that.
@Dubya_B himself explicitly says the same thing, almost word for word here: “This doesn’t happen to everyone and most people don’t care unless it happens to them.”
@LazarusRy and his mother had the same experience with doctors caring more about them as minors than as adults:
I love the fact @Cbrandel defended @Exsexgod here after fin users confronted him. I doubt those people on hair loss and acne forums care about me/us. Their posts are much more “demoralizing” and more dangerous to “fundraising and awareness raising” than anything I ever said. Someone may just read those tressless posts, take fin, and have an adverse reaction. Oh, then they might just single handedly pay for all the research in total. I get the impression you would not have seemingly lashed out at me if I said I was willing and able to do such, which I’m not able to. I am willing to do what I can when I can, so I cannot agree to “X” amount on “X” date though.
On another note, why don’t you fill out the post drug syndrome survey, Erik?
I have filled out the post drug syndrome survey.
You should not be venting constantly in your posts. Saying most people don’t care is not helpful or even necessarily accurate. You should be encouraging people to speak out and take action to get ourselves out of this mess. The wider world will care when we step forward and present our stories. Instead of saying people don’t care. It’s counter productive. Ask yourself what is going to get us out of this mess sooner and then do those things.
Let’s encourage people to do podcasts, write publicly about this condition, do gofundmes and more generally just step out of the shadows. If we do that then people will care about this condition.
Yes I know this subreddit experience. This hunting of PFS sufferers is really best support to the PFS it’s all in your head campaign if the pharmaceutical industry and the majority of the common medical community.
So here we need solidarity! The last time ofen people want to suppress other victims meaning. I have been censored by new members too, that my posts are not helpful. Than all the members who suffer hard don’t talk about their state anymore, because they think it’s not helpful, so I have to suffer quiet and alone.
We need engagement and positive attitude, but it must be a place where people can talk about their suffering too. PFS is no county club!
Well, people have been venting on this forum since its creation up to today. I do not want to name names, but there are others “venting constantly” in their posts. I do not judge them for it. Venting will likely continue .
If just 1 of my brothers or sisters feels remotely offended by anything I say, I will refrain from saying it again. I will not plead guilty to an infraction I did not commit though. I declare I am innocent of the charges of “demoralizing” and such. I will not intend to repeat anything along the lines of what you lashed out against me for; all I ask is for neither you nor anyone else to bring it up to me again. I feel compelled to defend myself, particularly when I disagree with the charges. Don’t we all?
I suspect you’re confusing the member story with the post drug syndrome survey. This is what I refer to:
I tried to link it directly and got a popup. I was under the impression those who have filled it out have a check mark near their username/avatar on the bottom right.
A time machine could get us out, if only we had one. I’m sure someone from the future has one. Filling out petitions would surely help. Here is a good one calling for the maker of fin to pay for the research: https://sign.moveon.org/petitions/merck-fund-studies-into
Let’s stay constructive, everyone!
My intention isn’t to lash out at you nor convey any ill will towards you. I am just offering my opinion.
When a major public figure acknowledges the validity of our condition it should be cause for celebration. People suffering from this condition badly need morale boosts every once in a while. This should count as such. It doesn’t make sense to dampen spirits by saying most people do not care in the context of such news.
I would also push back on the idea that most do not care. Have you had in-depth conversations with most people to ascertain whether they care? Have you put your story forth publicly, written an article on medium like Marc Turner did, or done something similar to ensure your interlocutor fully understands the situation?
If people think most people outside of our community do not care they will be less inclined to take action and come forward with their stories. This is extremely bad for our community when we need to go public with this condition. The outside world WILL care if we come forward and present the human suffering. Just look at how successful the Network has been in raising awareness. This is directly attributable to patients stepping forward and telling their story, and organising proactively.
We don’t need a time machine. We need proactivity from our community and an attitude that through scientific research we can find viable therapeutics/cure.
Thanks for linking me the survey!
Personality and behaviour is effected in many with pfs because of the drop in neurosteroids. I’ve said and done many things I regret because of this fucking poison. Be kind to each other and make allowances
I personally think it’s great that a celebrity medical professional name-dropped PFS and PSSD without proclaiming to have a full understanding of that which isn’t fully understood yet.
Now that medical condition that no one has ever heard of that crazy/lazy cousin Davey claims to have has been mentioned by a celebrity doctor and friends and family start thinking he might not be so crazy/lazy after all. They begin caring.
I just deleted my post.
Dr. Drew has been a lucky news…
Sometimes I feel so sad about our shit Situation that I have to write here to go not totally insane in my mind.
Only you all here can feel like I feel my self with this fucked off body and brain and no manhood anymore .
Was that tweet deleted ? I can’t find it on Dr Drew’s twitter page.
I just checked and it’s still there
I knew it would not take you long to fill out the survey. You did so faster than I did. On another note, I get the impression the Erik who recently filled out the petition I linked is you.
I do believe most people are not even aware these syndromes exist. I also believe there are other sufferers out there who do not even connect the dots to what they took. The one thing I like most about the Network videos is when I read a comment from someone saying they considered taking fin and then changed their mind after seeing the videos. Prevention is better than cure, by far. That is part of why any publicity is good; it all adds up, sort of like when I find a penny on the ground here and there.
The thing with going public is, how many of you have litigation experience? Because that is where it can end up. I can tell you it is stressful. Although my experience is in a different field of law than the relevant field for our cases here. Uploading a video or writing an essay is a step forward. I firmly respect those who show their face and reveal their name to the public. How many of you though would be willing to give a deposition if presented with the scenario?
Been nice talking to you!
I’m willing to do whatever to get us out of this madness. Fundraising, podcast, article writing. Whatever. Nothing is more important. We CAN get out of this mess. It is curable. We just have to push as a community. We will get there.