Future directives & endeavors

[Meso]

Hey guys/gals,

I'd been absent from the PSSD community for a while. Well, my family and I caught COVID-19 and am currently on the path to recovery.

I want to share my ideas with everyone on how to progress on PSSD. I think the most crucial aspect for us as a community right now is gaining awareness for the condition. The PSSD community is relatively tiny, with 1600 members but just ~100 active members.

I've been thinking about starting a PSSD website with the sole purpose of introduction and education about PSSD, with a google ad campaign linking to it for raising awareness.

I believe that the previous research initiatives have failed because of lack of resources, which comes down to the small number of people here. We have the brains ready, we have the theories to test, but we don't have the numbers.

What do you think?

[fellow1]

Is it for free ?

[Meso]

Is it for free ?

I have not studied the financial aspect yet. What about the idea itself, is it worth pursuing?

[PsychoGenesis]

a dumbed down intro on the genetic impact of PSSD can definitely raise awareness and maybe bring people from communities like CFS, POIS, and "hypogonadism" forums...

there's potential for doing so much more and we have the research part ready now

[Delfador]

To be honest it should be dedicated to all kinds of loss of libido and erectile dysfunction issues

[Naczoz]

Its a great idea. We have to push it so everyone affected can find it and atribute theirs symptoms to ssris, not other factors.

[Leb89]

Is it for free ?

I have not studied the financial aspect yet. What about the idea itself, is it worth pursuing?

The idea is very good. I vote for it!

[DrugsAreBad]

It's a great idea. People, including medical professionals, are ignorant that this exists. This is one reason why more resources (money, people, time, etc) aren't spent on fixing this.

Also, it seems whenever the community learns anything, it tends to be quickly forgotten. For instance, I found some old posts on usenet that discuss things that popped up here 10+ years later. We're wasting time going around in circles. So yes, it's a good idea.

[climb]

Hey guys/gals,

I'd been absent from the PSSD community for a while. Well, my family and I caught COVID-19 and am currently on the path to recovery.

I want to share my ideas with everyone on how to progress on PSSD. I think the most crucial aspect for us as a community right now is gaining awareness for the condition. The PSSD community is relatively tiny, with 1600 members but just ~100 active members.

I've been thinking about starting a PSSD website with the sole purpose of introduction and education about PSSD, with a google ad campaign linking to it for raising awareness.

I believe that the previous research initiatives have failed because of lack of resources, which comes down to the small number of people here. We have the brains ready, we have the theories to test, but we don't have the numbers.

What do you think?

Hi Meso,

sorry to hear you've had COVID and hope you and your family are on the mend now.

are you aware that there are pre-existing websites developed by groups of PSSD sufferers in Germany, Canada, the UK and now Italy too, I think:

https://www.pssd-uk.org/
https://pssdcanada.squarespace.com/
https://pssd-hilfe.jimdofree.com/

The Canadian, German and Italian groups in particular have made a lot of progress with raising awareness and instigating government / Health Service action in their respective countries. We have all cooperated and coordinated some of our activities to some degree, but we are a bit fragmented. Personally I am in favour of trying to increase this cooperation to try to increase the impact. I have also been in touch with PFS and PGAD groups who want to work with us.
Then, when we contact government bodies and Medical Institutions, if we do it as an international group, and we contact multiple institutions in different countries at once it will increase the pressure on them to act.

With regards to a new web platform, perhaps this could be something overarching that is linked to this site. This could be a network that regional and other groups are part of.

What do you think?

[Meso]

Thanks for the replies, everyone.

Hi Meso,

sorry to hear you've had COVID and hope you and your family are on the mend now.

are you aware that there are pre-existing websites developed by groups of PSSD sufferers in Germany, Canada, the UK and now Italy too, I think:

https://www.pssd-uk.org/
https://pssdcanada.squarespace.com/
https://pssd-hilfe.jimdofree.com/

Yes, but I'm not sure why PSSD isn't getting the attention of the mainstream. I refuse to believe that out of millions of people who took antidepressant, only a couple of thousands recognize this condition and even less actively participate in discussions - even if I take into consideration how the community is fragmented.

Why haven't these websites gain traction? are they too plain; too informative? or perhaps PSSD patients are too anhedonic and apathetic to care? Whatever the reasons are, this is why I thought maybe a google ad campaign + an attractive website could gain traction. What do you think about this?

With regards to a new web platform, perhaps this could be something overarching that is linked to this site. This could be a network that regional and other groups are part of.

What do you think?

It could even be one of the websites already existing, just re-furnished so to speak. I wonder if an ad campaign would be a success or would it be a failure or even shot down?