I told my friends, including many doctors, about my illness. They almost jokingly told me, “it’s impossible. Don’t care too much.”
Even if I took out the research of Baylor medical school, they still smiled and said, “things on the Internet are unreliable.”
Even if I took out the research of Baylor medical school, they still smiled and said, “things on the Internet are unreliable.”
I said, my logical thinking ability has decreased. He said you still know “CRISPR” and can talk to me.
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sorry，Sorry, I didn’t remember until I finished editing. There should be this topic. Please delete it. I have a little mental illness and always do unknown things
dont waste time convincing people
not just for PFS, basically everything in life. focus on what you can change directly in front of you, ignore the rest. almost certainly this will be things you can do yourself
so in this context what can you do?
maintain your health as it is, dont get worse
focus your attention on other areas in your life to improve the quality of your life and help us cover more ground as a group
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It’s all too familiar no one gets it outside of the sufferers. I tell everyone as in part it can raise awareness / stop others from taking it which I have examples of. Some prefer to keep it quiet. It is frustrating and upsetting st the same time so do what’s best for you.
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What is CRISPR ??
Gene editing technology
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Probably the most reliable way is to pull down your pants and show them your deformed penis.
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lmaoo
Ironically, my penis looks “very healthy”. Brain fog, depression and fatigue are my biggest concerns🤪
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Has your mental problem not been solved yet?
I only have mental sides
And they are all permanent asides from the short term memory loss recovery that most people experience
ಥ_ಥ(ಥ_ಥ)
I can’t even convince an accomplished Urologist, whom I’ve known since he was a student in grade school, and knew and respected the old “me” before PFS, or other doctors I have personally known for decades before PFS. I will say most treat patients the same way some mechanics treat cars, and they’re on the way to the next one. I also personally know a couple of psychiatrists, both of whom just prescribe pills to their patients.
Mind you, I didn’t share with them that I have PFS, and only asked their professional opinion of getting on Finasteride for hair loss and how that squares with the horror stories on the internet about our condition.
It’s really a sad testimony to the profession, and a worse testimony of the character of people I really used to call friends.
If anyone has a way, other than @orthogs suggestion of pulling my pants down, I’m all ears.
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I don’t know if you meant this as a joke, but it’s completely impossible. I dropped my pants for many urologists/andrologists and they all say it’s in my head.
They just check for peyronies.
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It would be nice if we could identify a relatively cheap / easy and objective test to differentiate PFS (and related) sufferers from non-sufferes.
Even just to make the docs say… huh… that’s interesting. But… they’ll use whatever mental jujitsu they can to maintain their mental model.
Even if we had the perfect piece of evidence, there’s still the matter of opposing inertia already present in the community.
Unfortunately, PFS is a black sheep… any certified professional worth their salt “knows” it’s a sham disease.
So much so… that defending it can hurt or even ruin their reputation.
Research has even been published, by established medical professionals, claiming it could be an “induced delusional disorder”: https://www.karger.com/Article/Fulltext/497362
I think we need to reach a critical mass for the system to change. As in… doctors stop prescribing fin to new patients until a PFS screening test is produced.
I have a feeling, this will happen soon… Merck has already re-labeled with the warning for potential lasting sides.
My fear, is once there’s a screening test, nobody will be getting PFS… which is fantastic for them.
But, it leaves us in the cracks… the people who got PFS in the pre-screening age.
At least then, doctors will treat us with respect and try to help us instead of demonizing us.
Roughly, I can see a progression like this:
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Proof of Existence: Find a simple, clear, objective signal differentiating PFS sufferers from non-sufferers… or some other proof.
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Disseminate: Use #1 to “prove” to the medical field that PFS exists… plus several “network-effect” social belief propagation strategies.
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Track: With acceptance, the medical field should start properly classifying and tracking PFS cases.
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Prevent: The medical field should ban Fin to new users while they develop a test for predisposition.
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Support: Medical professionals respect PFS as a valid medical issue, and insurance pays for its management.
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Cure: Medical professionals are now aware of the spectrum that is PFS and the large number of silenced people that are affected… only a small handful are here on PropeciaHelp.
Ideally, have Merck and associates pay for PFS recovery research, marketing initiatives, etc… but that won’t happen lol.
Instead, tag team with the traditional, capitalistic approach, building a for-profit product to treat PFS, and non-profit research initiatives.
This is happening now… BUT, until 1-5 occur, I’m not sure there will be enough money in the space to make a cure.
Even if we could develop a “cure”, with the current perspective, it could be disregarded as dangerous or sham.
Anyways… I’m not under the delusion that a simple, linear workflow is a realistic best path forward.
However, I do believe research efforts could be more effective if the professional outlook were changed first.
Anyways… just thinking out loud.
Cheers
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I’ve been attacked online and real life before for talking
About my experience. I can not find a doctor to treat me
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Well, exactly. Effectively, if we had this, we would be able to do many things, including be taken seriously at an individual level by doctors and GPs. In addition, there are research grants, ability to pursue legal action, etc, etc.
This CAN happen. But will not happen without your (anyone who is reading this) effort.
With respect, a doctor cannot prescribe a treatment which does not exist.
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You don’t. Unless the situation called for it. I told people close to me, didn’t call it pfs. Just potentially permanent side effects. And that it was changing my personality and subconscious tendencies. They hoped I would be better soon, there’s not much else to talk about.