The admin of a Minoxidil side effect forum mentioned that thousands of unique users look at this forum. And that there are much more sufferers visit the site as active users.
I don’t think those numbers mean much. As always with these side effects and conditions, given the nature of the symptoms it is likely that they are very much underreported and many suffer their situation in silence. It’s also likely that many of the ‘thousands’ who visit these forums might be the same people that anonymously visit this forum or other websites on the subject. It is also not clear whether all of these visitors are actual patients or otherwise people who are interested in the subject for whatever reason. It’s simply impossible to tell how many patients there really are, and to be frank, it shouldn’t really matter.
The truth remains that no matter which way we look at it and how many other ‘post-drug syndromes’ with a similar symptom profile we include in the ‘vocal’ patients category, we remain a relatively small patient community, splintered all over the internet on various sites and platforms.
Also please keep in mind that starting a new thread shouldn’t be casually done as if ‘randomly starting a chat’. Please refrain from starting a new thread unless you have a genuine goal or question or concern or otherwise a clear topic or direction for discussion. It really isn’t clear to me what the intention of this thread is, other than just posing a random question and hoping to evoke some response.
Let’s all try to keep things a little bit organized and create a situation where threads are not just random ‘daily public chats’ alright?
I think numbers mean much. If we all with post drug syndromes register here from Europe to China from South America to Africa and we would be ten thousands and more, we had much more awareness, much more donations, much more research.
A greater pool to speak out public and a bigger chance that all the hazardous poison like Finasteride, SSRI, SNRI, other dangerous Antidepressants and psycho killer drugs get off the market and pharma industry is shrunken by restrictive control and forbidden lobby criminality.
It comes from my heart and it’s soul made and not another random daily chat. I don’t criticize the hundred recovery protocols, if someone believe, I don’t take their hope away. And I want to motivate long time lurkers to join the community.
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I agree it would be helpful to have all post-drug syndrome groups working together, as the mechanism is likely to be very similar and thus research results could overlap.
However, we need to start with our own community. Despite there being thousands of PFS patients, finding a united voice has been extremely difficult throughout the history of this disease.
We’re making progress but spreading the word about our recent work would be a good place to start.
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Perhaps my comment came across a bit negative. I obviously feel the same way about these things, but what I wanted to say was that it would help to tackle one topic at a time and not wantonly pose open-ended questions without a clear direction for discussion. Numbers can obviously mean many things but I was talking about the specifics you mentioned in the context you mentioned them.
What I want to suggest: maybe as an addition to a question like this, come up with some more clear ideas on how one would go about answering the question, or what it implies, or what the implication implies. Stuff like that. Maybe a suggestion on how to go about achieving these things you mention, or how to reach out to actual lurkers, or how to get people to register their side effects more, etc etc. Instead of merely stating that they are issues that need to addressed.
It’s valuable to try and be a little bit more concrete from the get go, is what I’m getting at. Because I can’t read your mind.