What are you waiting for?

Thanks to the PFS Network we have some of the best researchers in the relevant fields of science committed to solving this issue. Please join our whats app group of fellow patients committed to donating 100 euros on a recurring monthly basis to enable more studies to be conducted by the aforementioned researchers.

On the last post created by @Toughluck24 regarding this topic, we had 140 views. If those viewers joined us we would have 140 x 100 = 14,000 euros per month for research. Needless to say, this would be a significant morale boost and help ensure studies can continue on a proactive basis.

So my question is what are you waiting for? We are not going to get out of this by being complacent or expecting others to do all the work.

If 10 of you who read this post step forward and join our effort, I will personally donate an additional 200 euros to the PFS Network research fund.

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A bit unrelated to this particular topic, but if we also want to get a lot of founding, the PFS fundation should sue the pharmaceutical company behind it, not only to retire fin from the market, but also to use the money for research. There are lots of lawyers that have been affected by PFS and have individually tried to sue them, if they all joined toghether and coordinated a case, i’m sure they could at least have a chance.

I agree we should explore all avenues. But let’s make sure each patient is doing what they personally can as well. Would you be willing to join our whats app group and commit 100 euros on a monthly basis?

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I will probably donate regularly when I get a job, for now i’m just 18 y.o. lol

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Would you ask a family member to support instead? You have a legitimate health condition which warrants attention and support. If you are having difficulty speaking to your family about this I would be willing to speak to them if you would like.

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At this point, that would be very unwise, imo. Once we have more proof it would make more sense. Once we can prove the existence and crucially, test for post drug syndromes, it’ll be impossible to deny. Until then, we run the risk of being out lawyered or perhaps even worse, accepting a derisory sum.

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@Greek is right, the only path to a successful class action lawsuit at this stage would be uncovering the underlying mechanisms and finding definitive proof that Finasteride causes PFS.

The best way to get there quickly = regular donations. We’re a small community, but @Erik is spot on. The more people who commit to regular donations, the faster our researchers can help us out.

Imagine the position we’ll be in if at the end of this year we’ve got $100-300k ready to go for additional research. We could really get things moving in our favor.

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I’m sure we all are “waiting for” the same things: A sudden, miracle 100% recovery, which is unlikely. We are waiting for science to get to the bottom of the syndrome, which appears nowhere in sight. After that, we wait for a potential treatment to be put together. Next, we wait for clinical trials. Finally, we wait for FDA approval. Did I miss any steps? Assume funding is not an issue, this will take more time than we would prefer. I’m sure my bucket list will be completed by then.

I’m concerned about the chance of adverse reactions to a potential treatment. We got burned once; we don’t want to get burned again.

I’m also concerned about the price of treatment. It won’t be delivered to every member here without a fee.

Which brings me to: It should not be our responsibility. A neighbor lights off fireworks and it causes you injuries. Should you pay for your treatment or should they, considering they caused it?

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You cannot commit a simple sum of 100 euros a month to support experienced scientists who are only charging us sequencing fees in order to get to the bottom of this condition?

On the other hand, if the neighbour denies he was the reason and there is no witnesses. Would you rather pay yourself or become crippled for life?

Life is not fair and if you want something done, it’s best to do it yourself.

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If we consider the two decade long history of PFS, it is clear the PFS community is in a much better place than ever before. Thanks to years of hard work by the PFS Network we have world class scientists on our side, with the right tools and a crucial interest in uncovering the mechanisms of our condition. No-one is doubting that this will take time and money.

We just don’t know whether this will be the case. Once the biological target for a PFS treatment has been found, it could be that tools are already available which could either cure or significantly help our problems. At least we will no longer be shooting in the dark.

The world is bigger than the United States. If it is clear that the treatment is safe, I am sure I and many others would travel anywhere in the world where the treatment can be administered.

I absolutely agree. However, we have to prove that this drug has hurt us before we can pursue any kind of case. The burden of finding the mechanism which causes our problems is on us. The PFS Network is doing all that it can to get us there, it is essential that we consistently donate to allow the issue to move as quickly as possible.

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These thoughts cross everyone’s minds here. But you’re getting way ahead of yourself here. This speculation is exactly that, speculation.

Some points:

1. The time it will take to get a treatment: We don’t know. But the faster we fund our researchers, the faster it will come. There could be drugs and treatments already available that will be helpful to us. There is also constant research into relevant tools and drugs that is happening independent of us. This does not appear to me to be “nowhere in sight.” Interest from the scientific community, and recognition from clinicians have come a long way in a relatively short time.

2. Adverse reactions to potential treatment: We all went through a traumatic experience here. None of are going to be able to take a drug or treatment without considering this again. That will take work to get over, but you’re way ahead of yourself here. We have no idea what a treatment will look like, so certainly not the safety profile of that treatment. Don’t catastrophize here. The treatments the experts expect to be relevant to us are increasingly specific without off-target impacts. Try to be optimistic, I know it’s hard - believe me.

3. Cost of Treatment: We don’t know this yet either. A lot of our experiences with clinicians so far has not been covered (at least in the US), that’s because our condition is not recognized and our healthcare system is shit. If it were recognized, it would likely be covered by insurance. I’ve worked in the regulatory field re. this before – I speak from experience.

Lastly, yeah I agree this shouldn’t be on us. But if there’s one thing that has been on full display the last few years, is that our world is not as just as we’d like it to be. The activist in me would say to you, we can change that. But for now, we have to be our own advocates. It sucks. It is not fair. And I too hate that we live in that reality.

But if we can pull ourselves out of this, it could only take a little effort to discover something that would bring about the external support we want and need.

I’m sorry @Taw, I’m not trying to rag on you here. Nor am I pressuring you do contribute more than you can. I truly understand your concerns. I don’t always feel optimistic, obviously this disease can bring you down. And I’m a pragmatist, but I think there is real reason to be hopeful. I wouldn’t spend my hard-earned money if I didn’t think we can do this. I hope you stay well man.

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