I am planning to write some letters to university hospitals. As English is not my first language I need help with the letter. Please help me designe the letter body and what should we include in the letter. I am planning the letter to have autoimmune disorder perspective.
thanks and God bless every body.
Good work sps. But I wouldn’t try to convince them this is an autoimmune disorder just yet. We just don’t have the evidence. Plus, I am speculating but awor seems to be hinting of some kind of epigenetic change and not an autoimmune disorder. I would hold off on that and just write the letter about the problem.
ok guys as I said I am planning to write letters to hospital. suppose by any luck I get a positive response and they ask to call some guys for testing and research would you guys be ready to go?. I am planning to write to US hospitals I have no hope with Canadians. I am not counting myself as I don’t qualify for such research although I have exactly the same issues.
This is what I have written to 3 top U.S. research institutions.
[b]Dear [NAME OF RESEARCHER]
There is a growing concern about the dangers of 5-alpha-reductase inhibitors used for hairloss. Several [link given] papers [link given] have been published about persistent sexual and mental side effects of these drugs, such as finasteride. Finasteride is a potent 5-alpha reductase inhibitor used for male pattern hairloss and benign prostatic hyperplasia; the most widely used finasteride product is Propecia, marketed by Merck. Merck guaranteed any and all side effects would disappear upon discontinuation of finasteride. We now know this is not true. New reserach is shedding light on the dangers of finasteride. Many men around the world are suffering from permanent sexual and cognitive dysfunction which is known as Post Finasteride Syndrome. Dr. Goldstein from San Diego has written an interesting article [link given] on the subject.
To date, the exact cause of persistent side effects have eluded doctors and researchers alike. I think [NAME OF INSTITUTION] is capable of solving this problem that is affecting thousands of men worldwide. If you are interested in researching this debilitating condition, please contact me or anyone else interested in finding a cure for the Post Finasteride Syndrome. [/b]
Has anyone here spoken with Dr. Traish at Boston University? I feel as though he would be the guy to talk to since he’s a really good researcher and this is his field. I would assume he would have wanted to research this on his own anyways.
e-mail him and ask. I already did. atraish@bu.edu
The more people we have working together, the less they can ignore us.
What did he say?
I emailed him ten minutes ago.
Come on guys, we need to reach out to the scientific community more. The U.S. is chock full of amazing research institutuions, some of which might be interested in studying this problem. We’ve got the papers by Goldstein, Irwig, Traish, et. al to get us off the ground. It’s time to take that and run with it. They can’t ignore us if we work together. I’m emailing top West Coast Universities, along with the National Institute of General Medicine Sciences. I think everyone should start with that. Call them and email them and tell them the problem that Merck and the FDA created.
Although I understand your motivation and applaud your drive, your approach is counter-productive. Claiming an autoimmune disease will make them think that you are a nut case, thereby hurting the credibility of this forum.
We have the science side of things very well covered at this point, and do not need the assistance of members with letter writing. Also, from what we know from our research project, there is no ground whatsoever to be talking about an autoimmune disease.
Btw, why don’t you read this update so you know what is happening on the science side of things: viewtopic.php?f=33&p=50482#p50482
thanks Awor for taking some time to respond to my post.
Ok I will not mention any auto immune discussion in my letter.
Hey Second Amendment, did Dr. Traish respond to your email?
No, the only one who responded was the NIGMS. This was their lame ass reply.
[b]Thank you for contacting the National Institute of General Medical Sciences, a component of the National Institutes of Health. As NIH is primarily a research-based agency, focusing on particular diseases, your request for research on an ailment caused by a drug is out of the scope of our mission. The FDA is probably the most appropriate government entity to contact with this inquiry. You can reach the Division of Drug Information (CDER) by phone at (888) 463-6332 or (301) 796-3400, or by e-mail at fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/default.htm.
Office of Communications and Public Liaison[/b]
I already contacted the FDA and have yet to receive a reply. So I found these mother fuckers and wrote an email to everyone of them. I suggest everyone else do the same
Here was the email I wrote
[b] In 1997, the FDA made a huge error by approving Propecia (finasteride 1mg) for treatment of male pattern hairloss. Despite the manufacturer’/ Merck’s claims, an unknown number of men have been left with permanent sexual and cognitive dysfunction due to finasteride. The problem has come to be known as Post Finasteride Syndrome (see links below). Unforunately, until recently, many doctors have been dismissive of the men’s claims that finsteride left them with persistent sexual and mental problems. The problem is now accepted as real, but to date, there is no treatment for the Post Finasteride syndrome. I believe the FDA is capable of helping to solve this debilitating condition. I also believe it is the responsibility of the FDA to help solve the problem that Merck and the FDA created.
Please contact me about to learn more about this problem so we can set up research initiatives to cure this disease.[/b]
onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2011.02368.x/abstract
onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2011.02255.x/abstract
onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.02157.x/abstract
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So I called one of the FDA regional office of New Jersey and talked to Joan Lytle. She was very polite and understanding but was unfamiliar with the situation. I told her about the permanent side effects of propecia which was undisclosed to men. She said the last safety revision was added for depression. I asked her if depression was an appropriate side effect for a cosmetic drug and asked if make up caused depression would it be legal. She said no and agreed on my points. She said she’ll have someone from headquarters call me.
To date, she is the only one who has answered the phone. I emailed and called every other one and so far they have not responded.
w00t w00t!
Spoke with Maria Velasco from the TX Branch of the FDA. She was also very understanding! She said this is a horrible drug and it should be taken off the market. She said she’ll also contact headquarters. Come on guys, we need to make one last push to get this horrible drug off the market. We are almost there.
Does anyone know how to find out how much Merck profited from Propecia?
I called FDA headquarters and they gave me a number to a regional office. I called the regional office and the number was no longer in service. I called another local office and they gave me the number to … FDA headquarters.
Yup, these are the people we rely on to protect us from dangerous drugs.
what can i/we do to increase awareness and interest researchers? how can i be helpful? i went once on television talking about pfs and i’m trying to go to an even more popular programme but they doesn’t seem interested in the problem (or rather they’re are afraid of merck or bought off by merck). i feel that i must do something for pfs, but what?
We are in direct contact with Prof. Traish since years. We are also in contact with the other main players in the area of AR related research. Our “problem” currently is not one of interest or lacking contacts, it’s just a question of money and funding. As previously stated, it is of little use, and possibly even counterproductive, if members of this forum - inexperienced in this area - try to contact scientists directly. I promise you, we are working on some very big things in the background and currently have all the bases covered. Just have faith in what we are doing, even if we can’t talk about everything we are doing up front.
If you want to spend some time on letter writing, what would REALLY help us, is to write letters to media, politicians and the FDA. That would be HUGE help! Indirectly, massive media coverage of this problem and political awareness will ultimately help us with funding. In other words, by helping to create more media and political awareness, you are indirectly helping research in a way which is much more effective, than by trying to contact scientists.
Anyhow, thanks for everybody’s interest and the time and effort you are willing to invest. Just please let’s funnel this energy into a direction that that is effective.
That’s great, cause that’s exactly what I’ve been doing! I just spoke with 4 FDA regional public affairs specialist. The women (they were all women) were very understanding of the problem. They said they can’t do much to take it immediately off the market but they said they would communicate my complaint to headquarters and make others aware of the problem.
I think everyone should do this. Call FDA headquarters to complain, plus all the regional public affairs specialist and speak to them directly about the problem.