Not sure if I got your point. Do you mean we should present ourselves as more optimistic in order to convince more people to join the effort? As far as my messages within the pssd communities are concerned I‘d say they are positive and meant to motivate to join the cause.
Well, yes.
But here too. There will be people here who have signed up almost 3 months ago who I’ll be tediously (for all concerned) asking and reminding to take the survey. I should say that I thank you from everyone here for your efforts in getting more people to participate.
If the pervasive message of “man, it’s hard to get people to take the survey” is reframed as “taking the survey is so important and could make the difference, how can we all work together to get a better result” the outcome might be more positive.
I’m not knocking you, just wondering if we need to change strategy, work together and think about what we can do to transmit the positives, right down to the language.
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Now I got it and yeah I agree. I also admit sounding a bit pessimistic here but at least in my opinion I think my messages to the other pssd folks on other platforms are pretty much positive and encouraging. You’re right that a common positive and constructive attitude is important.
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About a month from now when I am a little less than completely swamped with grant proposal and other project I am busy with right now, I will see if I can come up with ideas for reinvigorating the video project as well as update myself on where sufferers of the other drugs gather in order to reach out again.
In the meantime, it would be good if someone with a medical background could come up with the most SUCCINCT possible explanation of how the drugs are likely related. It would also be good to find one best publication (rxist?) that discusses ALL 3 major groups TOGETHER. That way, the explanation can be posted on forums and the publication can be linked.
To get anywhere, we need to be the opposite of divided and conquered. In order to unify cause, we need GLUE. The concept that we all have something in common needs to be prominent in peoples’ minds and the hypothesis described by awor but generalized to all 3 groups can be the glue.
I’m optimistic that with unity of groups and things like video project we can start to get real attention and therefore interest from scientists.
Well done guys. Very proud of you. I hope it will lead us somewhere positive.
I’m so sick of the negativity, this document is such a good thing. It sounds so sophisticated and could help us so much and straight away people are just looking at negatives. It actually helped me feel less depressed yesterday and then shit comments threw me straight back in. Not the content just the attitude. Half the reason no one does anything here is because certain members say stuff like “ that won’t help” “this will take a decade to get anywhere” “nothing is working” If people actually did the things we had in place currently then we would be a lot further along. Instead everyone wants to discourage and try to convince everyone else it’s worthless.
If people were actively doing their part and beyond with the attitude that everything they do is going to work out in the direction to 100% find a cure then more people would be more active in doing things and this would become a reasonable outcome.
Has anyone read “the secret”? It’s mostly garbage. But it works. It works because when people think they’re going to get something they work harder in every aspect to get it and do the things they wouldn’t if they didn’t think it was possible. The law of attraction at its finest.
Maybe if there was more awareness about this we wouldn’t need dead bodies to help us. Maybe brain biopsy’s would be possible. But no one cares about finding solutions just bashing everything. Even posting about the YouTube project everyone convinced each other that it’s not going to work even though it has so much potential to make an impact. Everyone convinced each other it will somehow get them fired from a job even though it won’t make a god damn difference in hell.
I need a break from here. Sorry.
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Only being negative is certainly not productive but I don’t think it’s per se a crime against morality to voice concerns and doubts. A common „let’s do this“ attitude sounds nice and is probably vital for a neglected patient community like ours but there are also realistic potential limitations one shouldn’t just simply brush off as defeatist.
As for the current mediocre success of the video project the cited article actually says it itself. The side effects of pfs etc are associated with so much stigma and shame that many affected apparently feel too vulnerable to have their faces publicly tied to this degrading misery. I admire every courageous member that participates but I also understand anyone who is just not ready for this. It’s not fair in my opinion to suggest these people are all lazy or have „bogus“ fake reasons to not participate in going public. I’d agree though that some seem to mostly focus on complaining instead of finding a small task they can engage in.
My basic view is that members of the site don’t think of it as a community where people have responsibilities so much as they view themselves as victims who are owed. So when people like awor invest their lives, basically, to try to help, it’s not enough for people and they just kind of sit back with arms crossed waiting for more. People don’t have the mentality of finding ways of helping. There’s no future here if that doesn’t change and it doesn’t look like it will. The only contributors (e.g., awor) will just move on, if he hasn’t already.
There needs to be a leader with time to commit to a lot of responsibility. That person should either be reimbursed by us somehow or be someone who is retired. I thought crowdfunding something like that might have potential. Or making the videos private until we have a large number of them and then going back to review raw material and possibility request some of them go public. If we could report a sizable number of videos from this site we could get a snowball going with PAS and PSD victims contributing too eventually arriving at something impressive and/or even the organization of a proper documentary.
I don’t know. The incredible thanklessness and solipsism of people here just makes me want to leave. I see I’m not the only one.
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I personally like the (retired) leader idea a lot but I can only speak for myself of course
Seems like it’s only the two of us and maybe bunny if she’s still around. Sympathizing with bunny at this point, though.
I would bet there are quite a few for instance senior citizens maybe even with experience in the medical or clinical field that would like to assume some sort of a leading role. But maybe I’m thinking in too simple terms I don’t know. Maybe it’s the challenge to organize this across countries/continents.
I doubt country really matters. We just need someone to lead a public outreach drive. A potential problem is that there either might not be a lot of people of retirement age that have taken these drugs yet (pfs and pas case possibly) or else there arent many people at that age who care much about sexual dysfunction anymore. If someone is 65 and took the drug 30 years earlier they might have already moved on from it psychologically and therefore not be aware of this community.
Overall, though, I do think there should be plenty of guys who dont need to work anymore that might be willing to assume this role.
Hey all,
Thanks for the supportive comments and enthusiasm.
To answer a few points:
300 F would be good, then 100 of the other groups. A this rate SRI will likely hit the 100 mark soonish, although I would be happier with about 150 if possible. Fin will creep up naturally, I think the most important to actively seek out would be accutane patients. It’s very difficult to know if it’s hard to find the patients due to there being less of them, or if the patients are just extremely fragmented. I think @Northern_Star and others are intending to spend time hopefully tracking some down and letting them know about the survey.
To get attention we (or someone) needs to publish the results, and to do that we need to either progress towards more advanced statistical analysis than we currently are able to do (which will take a while) or partner with an interested young scientist who would want to help bring this to publication without funding. So, consideration and technical work can go on alongside the continued gathering. I must say however that I am not able to speak on the complexity of what is required as I am not even vaguely familiar with practical statistical analysis in R, something @awor is looking into.
The mention of examination of post-mortem tissue was simply because examination of potential changes to certain tissues will necessarily need to involve cells from that tissue. As pointed out, attempts have been made to obtain this before via the PFS foundation SWBB project. This, however, is not critical to progress towards mechanistic understanding (or something that could be done about it), especially if the condition involves a pleiotropic mechanistic underpinning related to effects in peripheral tissue. Therefore this line has been removed to avoid that implication.
Awor and I will continue to do what we can and continue in an active management of the team and projects here, our health permitting. Despite the fact we do all we can for the issue, it’s important to bear in mind a lot of progress (and groundwork for progress) it has come from the strengthened organisation here and that is definitely not just us. The team has grown steadily thanks to old and new patients taking on responsibilities. We all discuss matters together, identify goals and then work to meet them. Individual moderators take on individual projects, and also users regularly (sometimes privately) contribute to efforts. I can’t thank the site staff enough - they are great people, my friends, and like everyone do not deserve the burden they have. We had a nice call yesterday and got a couple more projects planned.
Thank you. One additional benefit of this out is of course search engine indexing. I do hope involved professionals may find out site and issue due to this. So perhaps that might lead something positive to us too.
We first need solid proposals then a PI who is either doing the research, or a clinical specialist partnered with the institution doing the research, to assist with any such applications. As I’d mentioned something I was hopeful for was sadly dashed by the current global pandemic. Our current plan is to continue to put ourselves in the best possible position for resumption of those efforts when things (hopefully) go back to “normal” - at least for the rest of the world without PFS, lol. In the meantime @Northern_Star will be identifying rare disease grants so if anyone wants to help him collate potentially useful information for when the time comes, give him a message.
Finally, those feeling down about the challenges, or those feeling down about others’ posts that are feeling down about the challenges: It’s a very difficult situation and easy to feel hopeless. When faced with a broad forest it’s difficult to focus on the trees you can chop down one by one. I find it much better, as @SkinDiesel and @bunny88 implied, to just chop the tree ahead then look back at the clearing you’ve made rather than worry about how long the whole lot will take. I think we’re all well aware the situation isn’t great - but that is when courage counts right?
You can always take heart that lots of members (and the staff) are trying to remain organised and do what they can - and even get involved! The moderators are all working on individual projects most of the time and very often value genuinely offered help. It’s also helpful just being good members of the community, and doing easy things like encouraging participation in the survey to patients who might not know or have not got round to it. And of course supporting and being kind to each other is crucial and appreciated.
thanks all x
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I’m pretty sure they discussed that in the publication
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Question on the publication:
Is it saying that srd5a2 silencing causes the neuro symptoms?
Hi @lakehouse. No, the basic proposal of the publication is in the abstract. It is not plausible to suggest 5ar2’s methylation could underlie PFS. Even without consideration to the entire history of this issue in terms of patient experience, neither a genetically defective 5ar2 nor maximal pharmacologic inhibition of 5ar2 resemble PFS. Subjects with globally defective genetic 5ar2 such served as the basis of expectation for pharmacological inhibition of 5ar2 with Finasteride during the development of the drug. Per Stoner in 1990:
…A systematic biochemical investigation was undertaken which led to the conclusion that these affected male children are genetically deficient in 5a- reductase and are therefore unable to metabolize T to DHT. The clinical features which define the genetic syndrome of 5a-reductase deficiency have provided a model for predicting the biologic effects of chronic inhibition of this enzyme in the adult male.
Neurological symptoms are not present and libido plainly observed as “normal” in this adult cohort without functional 5ar2.
Accordingly, there was no correlation of symptomatic severity to 5ar2 methylation in the CSF of half the small PFS cohort in Melcangi’s recent pilot study. There is not a remotely plausible mechanism for the crash after cessation of an exceptionally potent enzyme inhibitor, which in many cases has happened after a temporary partial or full remission of on-drug effects. In short, a total shutdown of 5ar2 does not mimic PFS.
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