Yep, I share the same frustrations. I mean, it’s been forever… but lucky for us, we have way more things to look forward to that we are more in control of!
We have @axolotl research paper. We have the survey. We have 23andMe. We have member videos. We have this Reuter’s legal ordeal. And Melcangi studies. Baylor is going to come out on its own pace, but it’s not necessary to put all our eggs in the Baylor Basket anymore.
Why don’t some of you guys record personal videos and send them to the admins of this site to upload onto Youtube… That’s a pretty good idea lol. The only reason not to do it that I could understand is if you worked a job that you believed you would be fired from if the employer found out about the video…
Do you realize how slim the chances are that anyone at all that you know will even see the video?
On top of that, nobody gives a shit lol. I’ve literally told like 10 classmates, a few professors, and the Dean of my Doctorate program I’m recording this thing and sending it off to be on Youtube, and they’re just like “oh nice man, I’ll watch it.”. Nobody is going to judge you or think you’re a loser for telling your story. People are too busy worrying about their own problems, (granted they probably pale in comparison to PFS) to care.
I’m working on my own video at the present moment, once all these videos start being posted hopefully it’ll catch some some media attention. I’ll post my video here I’m not ashamed and nobody else should be, at this point my main motivation is making sure everyone knows how my life has been obliterated from one damn pill not even heroin could do the same damage. Could you imagine hundreds of users posting personal accounts there’s no way they could deny it everyone has to man up and do something to help themselves and this cause not hide behind a keyboard waiting for superman to arrive and solve all their problems. Activism is just as important as any study!
Yes, you’re right @Papasmurf, it’s hugely important - however, collective effort is far, far stronger, and that is why we need to pull together. We are currently working with users on several individuals videos, so could you please consider messaging our media lead @Jaime first and contributing yours to this effort? Concerted and collective effort with amplify your story and the return for yourself and all patients. Please see the topic below:
Additionally, please take and submit our survey (accessible from the bar graph at the top right of the forum on desktop or laptop) when you have time. You too @Frustrated.
Same question here, we were talking it will soon to be released in beginning of this summer. How long we have to wait more?
Hey guys!! I hear Baylor is publishing soon lol!!
From who?
In all seriousness where did you get that information, because your “lol” at the end of your sentence looks like you are joking. Spreading misleading informations is not funny at all.
Concerning the mental and physical circumstances most of us are in.
Pretty sure he’s just mocking all the past posts that have claimed to know anything
Baylor is a joke at this point so I don’t blame him for picking fun at it. I think that piece Reuter’s did was more ground breaking then anything Baylor will amount to and gave me more hope.
Haven’t started but I will once I get back on a computer I’m using my phone currently when I’m online.
And with good reason. Even more attention seeking and absurd were the posts that claimed something significant had been achieved.
I’m not upset about it, just explaining to those who didn’t get the sarcasm
its all pointless i guess. its so ridiculous that a fucking hair loss pill can affect your life so hard
What is this? Are you going to give up on us? We want to solve this. Everyone here wants to solve this. Get involved in our projects and we will make it happen.
I’ll tell you this. If this continues as it is now. I will most likely kill myself within 2 years. I’ve been sick with this shit for 4 years.
The Baylor study will be outdated by the time it’s released and I don’t expect it to tell us much more than what Melcangi has already covered. We need to move on from this study and plan another one that will involve potential therapy options.
I see you have sexual issues not to compare symptoms but I have every symptom in the book and more. I would rather have my brain intact and no fatigue over my sex life any day of the week in hindsight I’m now considered disabled but don’t ever consider suicide what use are we to anyone dead.