I wanted to access the article about Post-finasteride-syndrome on Wikipedia. I couldn’t find it.
When I google it it is not listed.
When I go to Finasteride “adverse effects” it says nothing about post-finasteride-syndrome.
What happened?
Did someone erase it and made changes?
Who is responsible for that?
And who paid them to do so?
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I assume once we get more recognition, it will be impossible for Merck to take this sort of control.
That is not true. There had been a long extensive article about PFS on wikipedia. Someone erased it!! That’s a huge skandal!
The German version of it is still online. It is a nearly word by word translation.
I really want to know what happened to the PFS article? Who erased it? Who made the changes in the finasteride article on “adverse effects”.
Someone is trying to hide the truth. This is a huge scandal and a huge chance. We have to bring this to media and blow it up in a really big way. With all the corrupt wikipedia authors that are involved - and how and why?!
This is big pharma mafia! But we are alive and fighting untill we find a solution to PFS!
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How can we find out who is resposible to the changes on wikipedia?
If they were spying on Wikipedia, this forum would be no exception.
Ask Wikipedia?
Anyone with half a brain knows Wikipedia is a useless source. So many inaccuracies Im not even suprised in the lack of a PFS page, it just lines up with Wikipedia’s untrustworthy reputation. So much so that you’d be penalised at university for using it as a source.
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I think if you are a watcher/editor of an article you can see all the historical edits
The archive of how Finasteride’s article has been edited can be found here:
Edit: Found all of the archives instead of just the 2nd one which is where the quoted section of my post comes from. It will take some more time to read through the other archives.
Much of the second archive revolves around what is a primary or secondary source and if inclusion in the article is in accordance with Wikipedia’s rules. The archive is actually a good case study in how not to approach trying to persuade those unconvinced or undecided on the veracity of the existence of this disease. @Frustrated has made this point before about us remaining measured and calm when trying to persuade “neutral” people. A glaring omission from the current Finasteride wiki is the recent Reuters article, an article which surely would meet their standards for sourcing. There is one Wikipedia editor who appears to have a bias against reporting PFS but the person advocating for more PFS aware information to be added to the wiki does not deal with him in the aforementioned measured way (he even references the Jewish ethnicity of the PFS skeptic as possible grounds for his editing behaviour on the wiki).
The archive is quite lengthy so I’ll quote some of what I believe to be the more pertinent sections [from the second archive] here. For the purposes of readability I’ve added “Wikipedia Editor” next to the quotes of those who were generally trying to restrict PFS aware information being added to the wiki but all parties were editors of varying authority it appears.
Wikipedia Editor -That is a blog, not peer reviewed research, unlike the 5 year Proscar FDA Study (n~=3000), or the FCPT (n~=19,000). The article could mention that the Swedish FDA did add a warning about persistent ED, but it should be noted that the side effect is listed as ‘incidence unknown’, and based on ‘spontaneous reports’. 5.1% of the placebo group had ED in the FDA study, and I’m sure a good portion of those men swear that sugar pills cause ED. The reason I feel it is important to point this out is that those spontaneous reports likely come from a site called propeciahelp.com which links to the FDA-like agencies of various nations, and encourages their user base to contact all of them. The take on the huge (n ~= 19,000) FCPT study says “Now, with several studies allaying concerns about the drug’s possible drawbacks, including concerns about sexual dysfunction, Thompson believes men should be told routinely about the potential benefits of finasteride when they come to the doctor’s office for a PSA test, in much the same way patients at risk of heart disease are told about the benefits of statin drugs.” They followed men in their mid 60s for seven years and could not prove persistent ED. In fact, the research is described as ‘allaying concerns’, not exacerbating them.67.84.209.60 (talk) 21:35, 10 August 2010 (UTC)
Wikipedia Editor -Traish is post hoc qualitative study that basically says "there are anecdotal reports of persistent side-effects, and goes so far as to misrepresent its sources. For instance, at one point it cites a study in which half of the men that discontinued finasteride did not see the resolution of symptoms. If you follow up on the source, which I’m sure even many medical professionals don’t, you’ll see that 50% of men in the placebo group also did not see the resolution of side-effects after discontinuation. This should obviously indicate that the side-effects were not caused by the drug, but Traish uses it as evidence for just the opposite. I normally try not to criticize peer-reviewed research, but Traish is Trash.
Wikipedia Editor - We’ve entered the unavoidable nexus of science and politics which is essential only for lay people. The main stream medical position on finasteride is that it’s safe and well-tolerated in adult males. Trying to usurp this article and insinuate otherwise is disingenuous, no matter how sure you are that you have some insight that actual medical professionals lack. 174.252.72.197 (talk) 19:48, 12 June 2011 (UTC)
Wikipedia Editor - People feel they can trust Wikipedia because we absolutely insist on specific citations from reliable sources to support claims. No matter how many blogs report it, no matter how many people claim to have credentials and know inside info that is being covered up by a government or company, none of that matters because none of that is a reliable source. If it’s important and there is actual vetted public information about it, it will be in scientific journals, mainstream major newspapers, etc. If it’s not yet verified from those sources, well, verification is a non-negotiable requirement–every reader must be able to check for him/herself rather than trusting another editor’s word. Even if it’s the truth, it can’t be here until it’s got an available source. WP:MEDRS is a good page about the level of referencing needed. DMacks (talk) 19:17, 2 February 2011 (UTC)
I think it would be worth mentioning the existence of PropeciaHelp.com. Assuming it is entirely fallacious (which is not the point I want to make) it is notable that a movement has organized against the drug in substantial numbers. With the following sources, would you now agree it is worth of inclusion?.. Propecia Help Dot Com (type into browser because it is blacklisted for some reason) - I do not intend this one to be used as a scientific source, but its existence alone is notable. Additionally, will you help me figure out exactly why this website is blacklisted?
Wikipedia Editor- I have a problem with it, and you even posted on my talkpage and I gave you a response. At the moment I can only recommend that you avoid the alarmist language (there is no “controversy” as far as I can see), that you use only the J Sex Med article after it has appeared in print (because it is the most reliable source available), and that you integrate the content with the present text of the article rather than in a separate paragraph. JFW | T@lk 19:57, 7 February 2011 (UTC)
If you took the time to look at the articles I posted, you would see that it is actually a literature review which is the highest quality of medical evidence according to [WP:MEDRS]. The controversy is obvious. There is substantial evidence that Merck has mislabeled the side effects on the PCI which have the potential to truly ruin the lives of those who naively take the drug. The fact that there is a class action lawsuit pending is additional evidence of a ‘controversy’. The alarmist sub-section is basically a public service announcement to ensure to those who are properly informed to the possible consequences of taking the drug so they don’t naively destroy their lives.
Wikipedia Editor - This is an encyclopedia, not a forum for public service announcements. I’m not the only person troubled by the tone of your additions; DMacks has done the same. JFW | T@lk 21:24, 7 February 2011 (UTC)
From your reinsertion of the same content, without an attempt to follow my recommendations, I deduce that you are not interested in forming any degree of consensus. It would not be good if the article was locked, but this will be the next step. JFW | T@lk 21:41, 7 February 2011 (UTC)
PropeciaHelp.com is blacklisted, but I would like to include a sentence or two in the side effects section. It is a discussion forum for the thousands of men whose lives are now ruined due to the unlisted side-effects of taking Propecia. It does not have to sound like a special interest story, but deserves to be in an encyclopedic article for those who are researching the effects (medically and socially) of the drug. Will you please explain to me why Propeciahelp.com is blacklisted from this article. I may be mistaken, but I believe you were the one to have blacklisted it.Doors22 (talk) 01:57, 8 February 2011 (UTC)
Wikipedia Editor - Find a decent source first, not some internet chat board. There isn’t any reliable evidence of a link that I’ve seen. External links to support groups will never be acceptable per WP:EL and getting it un-listed is just not going to happen. Wikipedia isn’t based on what something “deserves” it’s based on what we can support and at this point there isn’t much of a case for including it other than gossip and rumors. SDY (talk) 03:34, 8 February 2011 (UTC)
Wikipedia Editor - The article already contains loads of negative information about finasteride, which is appropriate if it can be supported by reliable sources. It is a lot more detailed and unbiased than any other encyclopedia article in a convential encyclopedia, but to maintain our credibility as a reliable source we must apply certain standards, and messaging boards are so fluid and unverifiable that we cannot allow them as a source. You clearly have negative experiences with the drug, which does not make you an unbiased observer. A quick glance at WP:NPOV might be a good idea. JFW | T@lk 07:07, 8 February 2011 (UTC)
I have had my experiences with finasteride, but it should not prevent me from upholding Wikipedia’s NPOV. As you are a Jewish, European, practitioner of western medicine, you are likely to have your own values and perceptions towards finasteride and male pattern baldness. I gather there is a good chance you are either undergoing finasteride treatment or have male pattern baldness yourself.
Wikipedia Editor - I find your personal observations about my background unhelpful.
Wikipedia Editor - There are lots of reasons why we generally don’t cover lawsuits. There are plenty of reasons why this may never get to court (e.g. the manufacturer may choose to settle). This is also the problem that any mention of class action is perceived as a covert attempt to solicit cases, something that certainly goes against the spirit of a general purpose encyclopedia. Finally, this particular lawsuit is only taking place in Canada, and is therefore mostly of local interest. JFW | T@lk 22:22, 9 February 2011 (UTC)
Wikipedia Editor - Also, per WP:NOTNEWS, that there is a lawsuit is probably not appropriate. That there was a lawsuit is more likely to be of interest, especially if the trial does actually bring out evidence of real effects. Given that people have a tendency to sue at the drop of a hat and for the most trivial things, the existence of a lawsuit is not a meaningful event. SDY (talk) 23:53, 9 February 2011 (UTC)
Just out of curiosity, are you currently taking finasteride?
Wikipedia Editor - I am under no obligation to disclose my medical history to you, but I do not have a conflict of interest. [JFW](https://en.wikipedia.org/wiki/User:Jfdwolff) | T@lk 06:56, 9 February 2011 (UTC)
Wikipedia Editor - I have rationalised the amount of attention devoted to Traish et al. Clearly, once we have cited a reliable source, citing the news stories becomes much less useful (unless the news story offers a radically new perspective not actually discussed in the source, as Andrew Wakefield did back in the day).
I don’t think anyone denies there is a problem, but that doesn’t need that we need to run around screaming “look here, this is really bad, you know!” The reader can conclude that for themselves. JFW | T@lk 10:49, 13 March 2011 (UTC)
-Need for balance
Wikipedia Editor - We are devoting a lot of attention to the sexual side effects of finasteride, but I am concerned that we are not neutrally representing all opinions. For instance, PMID 18421068 seems to imply that 5alpha inhibition has minimal impact on erectile function. They are not plucking that opinion out of a hat. PMC 2840927 is similar. This does not do injustice to those affected by these side effects, but simply represents the range of opinion in the urology/andrology research community. JFW | T@lk 12:49, 14 March 2011 (UTC)
the Traish article directly stated that neurosteroids play “an important” role in the aforementioned functions which was removed by JFD. I don’t necessarily mind its absence, but it was originally in the article and I don’t see why it was removed.
Wikipedia Editor - Removed “important” because it is a typical example of words to avoid. I think that if neurosteroids were that important, I would have learnt about them in medical school. Traish probably uses the word for the same reason: because it retroactively validates their hypothesis on the link between finasteride and specific problems. JFW | T@lk 19:59, 22 March 2011 (UTC)
Wikipedia Editor - This is meant to be an encyclopedia article, not a collection of things that you might find interesting because of your personal negative experiences with this drug. I urge you to keep the general reader in mind.
Wikipedia Editor - Again, I wish you would have a think about what the normal reader would expect to be reading in an article like this. Compare this article (in its pretty woeful state) with a good article on a drug, such as metformin or warfarin. Neither of these articles shy away from the adverse events associated with their use (warfarin is a dangerous drug, and metformin is not universally well tolerated in addition to rare episodes of lactic acidosis), but they do not make claims that cannot be substantiated with sources that individually meet WP:MEDRS. JFW | T@lk 18:32, 29 March 2011 (UTC)
Since JDWOLFF is being a Wikipedia Nazi I have moved discussion to the talk page. In my opinion, the information I have included is very germane and significant. It demonstrates not only that medical practitioners are taking Post-Finasteride Syndrome seriously but also informs to those who may be suffering from negative persistent side effects from Propecia and Proscar that there are current ongoing studies. While it may not be apparent on this Wikipedia article because JDWOLFF is very aggressive to remove comments he doesn’t like, there is an ongoing controversy relating to the side effects of taking Propecia. Many men have disregarded the claims since a handful of doctors remain ignorant to the potential risks of the drug and have been misinforming their patients only to lead additional patients to suffer what seems to be permanent side effects. Please state your case as to why the information about the conference should not be included or else I would put it back up.
Wikipedia Editor - Godwin’s law violated in the first sentence. Your personal attacks invalidate your arguments. I will respond when you’ve calmed down and apologised. JFW | T@lk 21:13, 25 September 2011 (UTC)
So there did appear to be a guy with an animus against Traish and this website’s URL is blacklisted there. Instead of interference by Merck, I could easily see this being a case of (primarily two) people butting heads on the issue and it affecting how the wiki now stands (but that doesn’t mean Merck haven’t had a hand in it). Edit: This opinion may change depending on the content of the other archives.
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Better some Moderator informs the foundation about it. Here is definitely a kind of sabotage going on. And I am afraid that the studies “coughs*Baylor” are also at risk by being controlled by merck.
I’m a massive conspiracy nut so this scares me.
Merck have billions of dollars. That kind of power, if they’re actively acting against PFS research, will slow down progress so much so that we might see nothing but snail paced information regarding PFS in our life times and nothing else.
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Copy and translate the German version to English and re-post it. Anyone can create wiki pages
Not really, it’s relied upon by large numbers of people for information, and is one of the most popular websites online.
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The same thing happened to the page about isotretinoin a few years ago, links to information about erectile dysfunction was removed. The links were to journal articles and authoritative sources.
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Horrific. Absolutely horrific. What a conscience such people have. Billions of wealth yet no conscience about kids suiciding or ending up homeless on the street or going insane with further psychiatric medication.
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For the record – and if you read my full post this would become even clearer – I didn’t say there was never a Wikipedia article about PFS. In fact, I did say such an article existed but was deleted every time it was published. What I did say in the quote you cited was that there wasn’t an article about big pharma’s undue influence on Wikipedia…
It’s not letting me edit it, but I think a neutrally worded, short reference to the Reuter’s lawsuit under the “controversy” heading might get accepted.
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The crazy thing is under “adverse effects” it doesn’t say “permanent damage” or “Post-finasteride-syndrome”.
We have to find out who is the person who erased that article. And than we have to blow up the story in the media - backed by scientists.
I heard we have contacts to journalism?
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