Hi all,
Other mods, feel free to move this if necessary. I’m too exhausted to think coherently so just making an update.
For anyone who doesn’t know me, I’ve been in the admin team for just over a year and contributing to projects like the YouTube stories, explainer video, new site launch and others. I’ve had PFS for 7.5 years and have always considered myself to be a moderate-severe case, albeit a stable one. After the initial 9 months of complete agony, my condition stabilised to the point where I did not have to worry about everything I put in my body. I ate sushi and soy regularly, for example, along with tofu. I managed to get a good job - my life was pretty stable.
Or so I thought.
Two days ago, I ate a very tofu-rich meal and within one hour, had a major crash which has left me bedbound. I have entirely new symptoms, like intense gut problems, head pressure, balance problems and numb extremities. All my existing symptoms became much more intense. My anhedonia is currently crippling. I’ve had random suicidal ideation, almost hourly.
So while I am here to document my current situation, I also wanted to point out the fragility of every member’s situation, and encourage you to not waste your precious time and energy.
Your condition is extremely fickle. It can turn in an instant, in even the most stable of cases
Please, for fucks’ sake, stop self experimenting. Treat yourself with care - we all care about you - and every patient alive and stable is another patient that can be mobilised into action.
Stop wasting time
Imagine all the hours of creating theories and self experimenting that have gone on in this forum for the last 15 years. 99.99% of them are completely pointless, whether you want to admit it or not. None of us have the capability to solve this alone, or even within our patient community, which
is by the way, incredibly small. Instead of creating a thread about the latest SAGE-217 or wonder drug, which is unlikely to help us, we encourage you all to contribute to meaningful projects led by our admin team. The two aren’t mutually exclusive, of course - discussing theories and contributing - but they often turn out that way, and the threads become an unnecessary drain on what precious time and energy we all have.
The most powerful thing any of us can currently do, absent of research that definitively proves finasteride causes this condition, is speaking publicly. Not a single issue in the history of humanity has been resolved by the afflicted population or victim group remaining silent and anonymous.
An online forum of faceless men is easily dismissed, easily diminished. Real people are not.
Please consider being a guest on our upcoming podcast series, contributing a YouTube video, or even speaking in the press. Get in touch and we can assist with all 3.
There is a lot of momentum being built since the launch of pfsnetwork.org. Let’s not squander it.
Be safe,
Mitch
