@malfeitor examining dead brains to understand PFS, it makes you realise how messed up this condition is. I’m worried for myself and everyone here. The realisation makes me feel sick to my stomach. The amount of research needed feels overwhelming,
I hate to sound like an ungrateful pessimist but how are we supposed to gather significantly more people to take the survey if the number of people affected - at least visibly in the internet - isn’t that large? How many people would we need to get to gain further attention by scientists? Would 1000 be enough? Are there even so many people affected in other places of the internet to reach out to? Wouldn’t getting 1000 people to take the survey take another 2-3 years? Is 1000 even enough or still a negligible number for science?
Again please don’t misunderstand: I totally and wholeheartedly support the survey and the impressive efforts for this patient community. Just feeling pretty uneasy right now.
They already had victims brains and spines years ago but never heard anymore it just dried up like Baylor.
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I share your uneasy feelings on this one…
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Hi Axo, just curious why you aren’t able to apply for an NIH R21 or R01. As far as I know, there is no interruption in current funding or the program in any other way generally.
Well, I would hope that people would see taking the survey as a non-negotiable task and that the community would recognise that people not taking part isn’t really acceptable.
Year on year, sign ups go up and so we should reach each milestone quicker than the last if we all work together.
On top of that, I hope that we will see people getting onboard fully in other communities. It SHOULD be easy to get many more people involved if Isotretinoin and Anti depressant patients take this seriously.
Open call, once again though - if you have been off a drug 3 months and still have side effects, you should take the survey.
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I wouldn’t be surprised if more than 1% of people who have taken SSRIs and Accutane currently suffer these side effects and have no idea it might be attributable to the drug.
That’s millions of people.
They likely think they are just depressed, or have naturally low hormone levels, are naturally asexual, or whatever have you. It’s pathetic all we have been doing is sitting here playing with herbs when the world could know about our condition and scientists could already be working with data off of thousands of people of all different creed, gender, and age. We could’ve been 10 years ahead of where we are right now. Instead, awor likely needs to move on with his career/livelihood and apply his expertise to greener pastures, Mew already did. One day we will get serious I suppose. Or we’ll all just die tragic lives like all our predecessors.
We’ve been sitting here doing nothing expecting awor and axio to do everything like some kind of thankless charity cause.
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On the whole I certainly very much agree with you. Still even if you frequently reach out to the communities asking them to do the survey many just won’t. Obviously no one can be forced. I suppose it’s fatalism and disbelief something positive may happen. While I can perfectly understand these feelings there still shouldn’t be an excuse not to take the survey even if you’re skeptical. I talked with the professor who is in contact with the German pssd community and he says that they see too few people that do show a more or less clear clinical profile of pssd. He absolutely acknowledges the condition. Sure there has been bias from the medical side in the past, lack of awareness among doctors as well as some patients themselves but still numbers are fairly low/cases are pretty rare from what professionals in clinics see. Granted pssd has just been acknowledged rather recently. So this doesnt necessarily reflect the real number of affected as you rightly point out. It’s just a bit tiring trying to get people to participate yet they won’t. Thankful though for everyone who takes the survey nevertheless.
Perhaps it’s time to ask ourselves do we need to continually acknowledge and perhaps reinforce the case against us?
Delusion is one thing and pessimism is another, but are either contagious?
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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.