If they made the edit before the policy was in place, it’s probably not noteworthy. But a documentary about the whole PFS story would be great. I am a big fan of documentaries and I live in a city with an active documentary film community. If we could raise money I could help look for a filmmaker.
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How much would we need? Maybe we can prepare some of their work like facts, contact to renowned scientists, families who are affected…
The national institute of health (NIH) had a page on post finasteride syndrome and it looks like its gone now to? Or can someone find the page they had, it went into detail of physical and neurological symptoms.
There is a guideline that mandates disclosure, but it isn’t enforceable so the practice is abused. There is often no way to prove somebody is a paid editor but they’ll have highly suspect editing behaviors. In one notorious case, a paid editor worked their way up to being an administrator before being discovered and banned by arbcom.
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Is this what you had in mind?
https://rarediseases.info.nih.gov/diseases/12407/post-finasteride-syndrome
Nope there was another one this isn’t the right one. The format of the page was also different as well. Odd
They deleted it again hahaha but I commented it on like 5 other posts. The social media person sucks. I agree if we got like 50 plus comments all at once that’s would be awesome. Maybe we can devise a strategy in the near future.
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What was the domain and what was on the page? Might it be at the wayback machine:
It looks like the Wikipedia article was declined…
Not it I’m still searching for it but I think it’s also been deleted wish I kept a screenshot of it, it was on the national institute of healths website not the PFS foundation, it would pop up on google on the first page, it’s definitely not there anymore.
Here’s this link but it’s still not the one that would show up on the first page of the google search and the format is different.
I sent a link to the old NIH PFS rare disease in my academic email. Will post it here later if I can still access it.
Edit: It was deleted in 2015 
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Why did they delete it?
I don’t know. Looks like everything in my outbox prior to 2016 was deleted.
All it was was a link to the old NIH rare disease page on pfs that I emailed to a genetics professor.
IIRC, it really only stated that there were reports of persistent adverse effects with 5-ar inhibitors. It was just nice to see the NIH acknowledge it is a thing.
I was writing them now from my academic email to reasses their positioning on PFS.
If they don’t do anything, more researchers should write them.
I’ve been directed to another group of editors and have asked them for guidance on next steps.
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I know it is easy for me to say this but - in order to address the recommendation to merge the article on PFS with the article on Finasteride - more effort might be needed trying to argue that PFS is not just persistent side effects from Finasteride, but a whole new condition that was caused by Finasteride.
Also, I believe, a significant focus needs to be put on the Reuters article and on the data from the original Merck clinical trial and its proper interpretation.
I applaud your dedication!
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I am making exactly that point to a community of editors. Stay tuned.
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At least the German article on PFS exists and is well done.
In Germany there also went an official warning “red letter” to the doctors here. I gonna try to find out what source they used in the “red letter warning”
I’m just catching up on this and hoping we can find out what is needed. Given the conclusion of the majority of recent cross-disciplinary literature review is that the evidence supports persistent sexual, physical and neurological symptoms following 5 alpha reductase inhibitor use in some men, there is certainly enough evidence for at least a limited page.
New moderator @Sugarhouse will be looking into it. Hoping a couple of the staff can liaise with some members and effectively pursue this. Please make contact with him if you are interested and we can invite non-staff members working on this to the project lounge forum to do this. I am personally busy with other projects but, as I have strong written skills and comprehensive knowledge of everything published on the matter, I can help where needed. At the outset, I think we need a bit more knowledge of the esoterica of Wikipedia itself. Those familiar with its workings will be useful here.
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I am in discussion with editors and I think it’s important that we not “flood the zone” by trying to do parallel efforts. I am not an experienced Wikipedia editor but have learned about editorial standards and guidelines.
I’ve gotten three responses from editors to a draft, each suggesting something different. If someone wants to be in the loop, message me directly and I’ll fill you in.
I’ve been meaning to continue working on the discussions with W. editors but haven’t been able to lately.
One reason to tread carefully is that if W. editors think there’s a coordinated campaign to get something in, with a certain point of view, it can be detrimental to the process.
I want to see this happen — that’s why I spent many hours drafting an article — but I think a patient, deliberate approach is more likely to succeed.
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