uhg…
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Yup, It made me think about how very little hope is conceivable when reading this…
But what about the few people that have recovered ?
That should tell us that’s its not Impossible to recover.
I really doubt most of the posted “recoveries”
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umm…
so we have to wait till were old
No mention at all of endocrine and metabolism shutdown, complete changes to muscles and skin, mental disconnection from the world around you, visual issues. This syndrome still continues to be misrepresented. “sexual dysfunction and depression” was described to me by the doctor. That’s the risk I took taking this medicine. I suffer far, far worse than sexual dysfunction and depression.
yup and “depression” is a complete understatement of what i experienced in the months following my crash.
every prescription for fin/dut should come with paximperia’s post printed alongside it. would people take the poison then?
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That’s why I’m an advocate of pumping out these youtube videos dude. If I would have seen more videos with users telling their stories (I think I saw 2 and thought they were horseshit), it might have dissuaded me from taking the drug.
How is this guy doing now?
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He took his own life unfortunately. Paximperia was the son of Dr. John Santmann who founded the PFS foundation
And yeah i too saw warnings on propecia on youtube. But still took it. I thought the videos were bullshit too
My English vocabulary is not rich enough to find the precise word here. Can someone help me please? What is it called when you know full well (better than anyone?) that there is no cure, treatment, studies or even awareness about a condition and yet you advice patients to seek medical help about it?
So I shouldn’t listen what my fellow-PH-ers say about how Tribulus affects them, for example. Fine. What paper on the effects of Tribulus (or anything else) on PFS should I read instead? How many treatment protocols have Melcangi tested and which ones are proven to work or not to work?
I guess Merck’s statement is only slightly more the-word-I-am-looking-for-here than Melcangi’s advice: “We encourage patients to talk with their family physician with regard to any doubts or questions relating to their health.”
Well as we’ve said before, unfortunately his working hypothesis and comments in publications do not recognise the physical symptoms of PFS. More than any theory, the most important thing we need is for people (inside the community as well as out) to recognise the full scope of the syndrome. This is why the standardised data from the survey is so important.
And I totally agree re YouTube. Humanising this problem is a huge priority.
@Sibelio: he does explicitly say “recommend”, and in my view he’s right. There is an immense survivorship bias and it is absolutely the case that far too many forum members across any of the issues insist on playing doctor/guru. That is very different to simply reporting your own positive outcomes and if you have thoughts, why you think that might be, which is very positive. As this is such a lord of the flies-esque scenario in which we’ve been disgracefully dismissed by the medical profession, this really contributes to the initial impression patient communities make on rational people as well as endangering patients. However, I very much take your point. The sum of patient clinical experience, often with the psychology profession and their (sometimes insisted upon) prescriptions, has shown that the exact same risks apply. They do not know what they are talking about either. Ultimately, this boils down to the simple fact that the systematic disregard of this issue is putting lives at risk, because it entails a wholly abnormal fragility to further endocrine disruption, particularly amongst the worst patients. As of 2019, that’s the same in a forum or in a clinic, and the solution is basic science, which literature review clearly concludes is direly lacking - and far outweighed by commentaries.
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Which is why a separate page dedicated to explaining the moderators current causal theory re PFS would be of a huge benefit. It would be competition to the absurd homebrew theories that are presented as fact by their proponents. Obviously you would want to wait for Baylor to be published and for any article you are working on to be submitted for peer review. It could also help people to appreciate why a new study is necessary and how it could advance or disprove the current causal theory.
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I do appreciate that and it’s in the roadmap. I think it will be apparent it’s not a trivial thing to write up, and the primary audience is our friends in the scientific community. I am, alongside this, doing a huge amount users don’t see under the hood with our programmer. As well as user management systems to record participation in the main survey, I will later on today be explaining how users will be able to use two new systems launching next week. One allow users to record and share their therapeutic responses and notable reactions in standardised data, while another allows the submission of records of test results. Unlike the main survey (which is more for outreach to scientists and representation), as these are for the benefit of users and data integrity isn’t so critical, users can update their therapies submissions any time, and continually submit new test reports whenever they want. The amount of work I put in is inordinate - please give us some time.
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There would have to be two versions. One version for the scientific community that will be submitted for peer review and a “translation” of the version into something patients with no medical background can understand. Otherwise the mentioned benefits for this forum (i.e. competition to homebrew theories and motivation to donate towards futher research) will not be realized, as nobody will be able to understand it except people who are steeped in the material.
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My question is, if they can’t definite what PSF is, how you can state that there’s is not way to recover from it ?
Because Melcangi knows you cannot reverse this depletion of neuro steroids…
How he knows that is not possible? If you don’t know the cause
…Oh well of course if you don’t know the cause it can’t not be reversed, but only until you found what is causing it.
The fact that not everyone that take 5alpha inhibitor develop PFS point to a epigenetic issue, today there are technology that can reverse it.
Just to mention an example
In my case I have all the mental symptoms suicidal thoughts, depression, anxiety, panic attacks constantly…
All those symptoms are gone.
Recently for an entire month I was feeling in the sexual side complete recovered, even having low free testosterone, I been able until now to have enjoyable sex with my wife.
It tell me that it can be reversed, and what he stated is not totally true.
A better answer should be:
Until now we didn’t found have the way to reverse it.
I don’t know how accurate the translation is, even though this kind of post is what makes people to commute suicide.
I think that Moderator should be careful about this kind of post in the future.
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Any of those drs will tell you there is no “known” way to reverse this change to brain hormones…If it is no one has found a way to do it…
Well I read that is possible.
Let say that you have a gene that have to he instructions to produce one of key the enzym that metabolites steroids is off.
Then you will not produce it. But it doesn’t mean that it can’t be reversed.
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