LazareRy, You can ask to receive the grid of official figures for your country. I did it for France and I was a bit disconcerted because we have a difference of about 500 victims between our association and the health authorities.
We absolutely have to find a way to make everyone understand the interest of this process, which is also anonymous.
Soon, with the agreement of the victims, I will have the right to do it for them.
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I will formulate a counter reply to them hopefully with continued input from @Greek and @Scotsman who helped with the original draft. Iāll also include the grid request. Thanks @lacreland21. Iād be interested to see how many of the 17.8k reporting sides on the foundation are from the UK. Thatās great news that you can submit with consent.
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This is on the front page of the website under āResourcesā
Not everyone is from UK/USā¦ i wish the āreport your side effectsā added many other countries as i am not able to find out how to report the side effects in my country.
It will be hard to gather a consisten ammount of people.
The more embarassing the sides, the less likely people are to report that.
And beyond that, I bet there are a lot of people around the world who havenāt made the link between symptoms and Finasteride use. How many times have we seen that?
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Dude itās literally the first two links. EU based agencies.
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Thereās a list of world wide regulatory agencies at the link I gave. If your country isnāt listed, please find out the contact details and Iāll arrange for them to be added.
We are all patients here, so when youāre asking for something simple to find like this, please look for an answer before asking someone else to do something for you.
I didnāt ask anything to u to do it for me. Just had a doubt in my mind considering the levels of side effects being reported in my country being too low. Donāt answer me if u find it too stupid to answer then, someone else may answer, no need to be cynical all the time.
Not everyone is from your EU or US or Australia or Canada, dude. I didnāt read about the south asian countries in that worldwide list, my mistake.
I donāt want this to be a negative interaction, I think you seem like a nice guy, and I must have misinterpreted your post.
The truth be told, I am struggling a bit with this place. It has been a lot of work to keep positive, to try and he helpful, etc.
When I saw your post my reaction was āwhy doesnāt he say āIāll find out how to report an adverse reaction and then that can be added to the documentāā? I interpreted your post as āI wish someone would do the work for meā
Sorry if I misinterpreted, I was just feeling a bit worn out.
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@Greek I understand what youāre saying I really do but one thing I can say for sure without you and one of two others Iād be long gone. Youāre words of strength have kept me from doing something regrettable. Your efforts are amazing. What you do for the community is so appreciated. You may have saved lives without realising how many people get to do that!!!. I get seriously pissed especially at the lack of willingness by many to do the basics even reporting symptoms to the authorities. āMy recent post about the lack of yellow card numbers being quite relevantā itās infuriating!!! Then we have @Sugarhouse who has left his career to help, what a commitment. Others need to step up and at least do the bare minimum. Iām very ill and fighting to stay in this world doing what I do gives me a reason to fight on, lying around crying all day would have buried me long ago @anon74895881 this is not directed at you mate as I know how proactive you try to be. But itās like banging your head against a brick wall on here at times.
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I write all the time not to get lnsane (Charles Bukowski)
You know Iām relativ new with sideeffects but for an elderly man it stroke me hard. With severe depressions, muscle loss, absolut no motivation anymore.
But here I find some new friends in my new reallity
Thousands of lightyears away from my old me.
I know @anon74895881 is one of the active members. @Greek does manything for the community and @LazarusRy is one of the most active connecting Newspapiers, authorities and filmed a Video allready.
That we all have suicidal thoughts with is I think normal to that what we suffer as this dirty dozen (17.000) with sideeffects like chem castrated and lobotomized living in an old mans Body. The Thing bewahre of doing the last conclusion is that it is Not so easy to jump intoā¦ or from ā¦that makes really fear.
If they would give us all the opportunity to do what we want without harm like in the US many of us would do so as fast as they can. But so we have to stay here, for the loved ones too, and we feel we are not allone.
You will say, you are new with this symptomes but all became worse, new symptomes muscle wastage added.
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Had there been any discussion about any prominent like Michael Jackson suffering Site effects from Finistarid the Shit weāre Out of the market. So we have to suffer that and a silent majority who donāt talk about the Site effects.
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@Exsexgod not publicly but there was also Robin Williams and Heath Ledger who also paid the ultimate price. I would put my salary on there being others. Except that I canāt because I had to give up work.
Ah, well forgive me for making assumptions. It might help to have a little flag behind your nickname like I have the dutch flag behind my username. But I can also understand you might not want that.
Forgive my annoyed reaction, but I think this little hiccup would have been prevented had you done a little more effort in searching. But then again I donāt know whether differences in language or alphabet make that harder for someone from asia.
Next time, be sure to let someone know where you are from if you have trouble finding the right country, Iām sure no one intends to abuse the knowledge of which country you are from.
Iām going to be a negative nelly here, and absolutely get attacked for this view, but Iām sorry surveys, public awareness, podcasts, etc arenāt going to do a thing for our cause. There is already awareness of this issue. The propecia side effects clearly state that the drug may cause permanent ED. Suicide has been well documented regarding this drug. What we need is hard science and research, something that Mew pushed for years ago. The PFSF website didnāt list any ongoing research initiatives last time I checked. I will gladly donate to any research initiatives that will help identify the cause of our condition. I am not interested in publicizing our condition because it has been the focus of many, many articles both scientific and in the general media over the past decade and a half.
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Please donāt take this as an attack, more of a detailed perspective on why this work is important.
There have been, at most, about 20-30 men or families of PFS patients who have spoken publicly over the last two decades. Many spoke on platforms with little reach, or had their experience turned into āman has EDā stories.
Ask yourself, is that really enough? Granted, itās a stigmatising problem, but look at other rare diseases and the number of people who speak publicly about their condition to raise awareness, advocate and fundraise, which all leads to the objective youāve outlined above, research. These people organise in-person fundraising drives regularly. We can barely get a couple dozen men to speak publicly over 20 years. Expecting researchers, the right researchers who can really drive this issue forward, to get involved with such a niche issue is not a realistic goal.
Before I got involved with the admins and PFS Network, I used to just think that research should just happen. That the Foundation was a large organisation sitting in an office in Manhattan, with a line of researchers around the block waiting to work with us.
Then you get involved and realise this is a really niche issue with a very small group of mostly volunteers driving it forward.
Good researchers are not lining up around the block to work with us. Many leading researchers we approach privately have never even heard of the drug, let alone this syndrome. Before we had the six patient stories all documenting the full catalogue of their symptoms and some of the phenomenon involved in this condition like the crash, before we had the survey data, and before we had the explainer video, it was an absolute bitch to even get a meeting with these guys. The last 3-4 months that has changed, and as we have mentioned in other updates, we are taking advice from not just any researchers, but researchers who have been published in the worldās two largest scientific journals.
That doesnāt just happen without the necessary awareness groundwork, the surveys, and the other things youāve mentioned.
Now, think about the impact weād have if have if every single registered user on this forum, which is over 10,000, spoke publicly. All of a sudden this is an urgent public health problem, not just an anonymous group of men on a forum, and good researchers would be genuinely interested in studying such a phenomenon.
It isnāt like we arenāt pushing for good research either. Axo and Awor spent years studying this condition and Axo has even written a paper about it. They spent the last 3 years travelling around Europe, meeting leading research centres in person, taking in advice from dozens of preeminent experts, and because of that, and because of all the other groundwork, we hope to have something for all patients to contribute to very soon, which has also been endorsed by the PFSF.
Iām sorry for the long post, but it is important for all to understand that awareness and good research go hand in hand, and that the latter is not possible without the former.
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