Well done, but that makes me wonder, why englisch wiki took so long to approve such an article, while in german an article about PFS exists at least 2 years (The time where i first looked it up) ?
Wow, this is great.
It really feels like we’re getting somewhere.
I hope it stays up.
I don’t believe it the page is gone already.
They just renamed it to “syndrome” lower case.
This is low-key huge. If this page existed (or if this info was on the finasteride page) it definitely would’ve validated PFS to me and I wouldn’t have believed the narrative that it’s just nocebo. I still might’ve taken it (my self-esteem was beat up real bad by my receding hairline) but at least I would’ve known what I was getting into and would only have myself to blame.
Am I the only person who remembers PFS being on Wikipedia early last year as well?
I added links to news stories that involved pfs related suicides. Got removed though
Someone trying to make PFS look unscientifically made an edit to the PFS article. For some reason the Morgellons Syndrome now appears in relationship with PFS. I find it very misleading and off-topic. To me the Morgellons Syndrome has nothing to do with PFS and it is only an attempt to discredit PFS.
Yep, that’s going to happen.
Kevin Mann’s 17 year old incel followers at it’s best.
It might be best to not attempt to use
a Wikipedia entry as proof or justification for an argument. It’s a good way to get lots of people attempting to edit or disparage the post.
In general there’s not much point in us attempting to engage with those who most forcefully make the case for Finasteride, etc. We won’t change minds either via arguing or by presenting proof, and it has the potential to make us look crazy.
Your time is better spent advancing our cause, not attempting to stop theirs.
@Greek great advice
Unfortunately, the article has been consistently degraded by a single editor who is, at best, aggressively incompetent. The page is now truncated, erroneous, and has replaced informative and well-reviewed research findings with his commentary.
The edit history and discussion around it is so full of mistakes and falsehoods that the matter is a failure of internal standards enforcement/moderation, not an issue of data or its provenance. There’s not a practical way to address it without a half-decent administrator taking a close look at what has gone on.
It’s a little disappointing this can occur, as many people do not have access to literature and rely on Wikipedia to reflect the state of scientific understanding.
On the plus side, what’s happened on there will hopefully be kept in Wikipedia’s records for the future as it’s a pretty damning chain of events. It’s very encouraging that the article went up in a complete state, and prior to an ideologue setting upon it, was satisfactory upon unbiased assessment.
Although this is a disappointing outcome, there are many other important projects taking shape which any patient can contribute to in 2021. These include the Video podcast, for which we already have six fantastic guests, the Family Advocacy Group, and hopefully a new study later in the year.
Que sera sera.
Wikipedia editors are hostile to patient advocacy groups. They are unable to distinguish between quality research and Jenny McCarthy-style anti-vaxxers and mommy blogs. The battle between the PFS community and Wikipedia has been going on for nearly at decade–if not longer. It’s no surprise that the editors are misrepresenting PFS research as they’re not knowledgeable on the topic. Their counter-arguments are complete shit. I’ve never thought highly of Wikipedia, but even I was a bit taken aback by the dishonesty of their editors.
Having said that, I’m quite pleased how it stands right now. Sure the original was better. But there is no misleading information about the iatrogenic disease itself, just a ham-fisted clause needlessly inserted claiming Merck’s knowledge of persistent side effects at the clinical trial stages are “plaintiff allegations.” It’s an easily verifiable fact. And sure, the research section is truncated but it’s concise and to the point. Most importantly it gives PFS legitimacy.
You’re right - it looks like an avid editor has pre-decided to lump it in with alternative health stuff. That’s a deep shame and a mistake. Nevertheless, if someone on Wiki is determined and has a lot of time, there’s really nothing that can be done for without appropriate admin scrutiny over the veracity of the changes. That’s difficult to achieve as it’s a very niche subject.
Part of why we decided to post on this was to ask patients, as you can see, not to provoke arguments on the web using this. Regrettably some people have done this (e.g. someone immediately tweeting at public figures who deny the condition) , which is a shame as it is no proof of anything. It’s just a web page. Wikipedia is editable by anyone, so as @Greek mentioned it was, and always will be, something that is very vulnerable to sabotage.
It is firmly in the category of “nice to have” at this stage, mainly as it would have given people who are mixed about taking the drug an idea of what’s in the literature. If it gets folded or violated, please don’t be downhearted. There’s plenty of opportunities to pull together and help, and we’re on track for an extremely productive year in every regard.
Can we ask the admins to lock the page so we don’t have to deal with crazies (on either side) constantly editing the article?