Future directives & endeavors

General discussions. Feel free to use this like a support group also.
fth
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Re: Future directives & endeavors

Unread post by fth »

Hope I did the quote thing right, I don't use forums often.
anacleta wrote: Sun Nov 15, 2020 2:36 pm Hi, I'm trying to give you some advice, which is what I've been doing since 2014, the first year I had PSSD. I opened a free and advertisement free blog where I translated the articles about PSSD from Rxisk.org into my own language, obviously indicating the original sources. I put together medical literature on PSSD since then, articles in online magazines, added a contact form inviting people with PSSD to get in touch, in order to expand a group on whatsapp.
Other: to contact people with PSSD through medical consultation sites; to disseminate on social networks.

I think this is a good point to start from: when there will be a good number of people it will also become a good idea to set up an association, create a dedicated website etc.

If you need help on which material to translate into your language to create a Dutch website or blog I can help you with many links, I have a clear picture of the situation in this regard.

I am also available to provide these links quickly to anyone else who wants to create more awareness and information in their own language, for which there is currently little material online.
Hi, it would be great if you'd be able to send me some links/articles that I could translate in the future! There's so much to go over so having somewhere to begin would help a lot.

You mention starting off with a blog and expanding by creating a website later on. I don't think it would be that big of a deal if I'd create a website first, right? I was thinking of maybe creating a site first with just some basic information on PSSD/SSRI's and linking to 'Lareb' (organisation here) in an attempt to encourage people to report their experience to Lareb if they find that they've got PSSD-like symptoms as well. I feel like a site would be better at presenting this kind of information as it's more static if that makes any sense. If needed, I could always make a blog and link it on the website and vice versa. But let me know how you envision it! And I was wondering if you have a link to your site as well, I'm curious to see how you did it. (-:

chemistry wrote: Sun Nov 15, 2020 3:14 pm Hi,
You could also start a Dutch group where yourself and other Dutch pssd sufferers band together to raise awareness and contact medical professionals/organizations in the Netherland. This is what Emily and others including myself have done (we have a Canadian Discord group, PM me if youre canadian and want to join) we have been making lots of progress this way
That's a good idea as well! Thanks. (-: What makes you prefer using Discord over any other platform for a group like this?
► Fluoxetine & methylphenidate (03/2016 - 07/2019)
► Symptoms started somewhere in 2018
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anacleta
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Re: Future directives & endeavors

Unread post by anacleta »

fth wrote: Sun Nov 15, 2020 10:41 pm

Hi, it would be great if you'd be able to send me some links/articles that I could translate in the future! There's so much to go over so having somewhere to begin would help a lot.

You mention starting off with a blog and expanding by creating a website later on. I don't think it would be that big of a deal if I'd create a website first, right? I was thinking of maybe creating a site first with just some basic information on PSSD/SSRI's and linking to 'Lareb' (organisation here) in an attempt to encourage people to report their experience to Lareb if they find that they've got PSSD-like symptoms as well. I feel like a site would be better at presenting this kind of information as it's more static if that makes any sense. If needed, I could always make a blog and link it on the website and vice versa. But let me know how you envision it! And I was wondering if you have a link to your site as well, I'm curious to see how you did it. (-:
I think a website with a nice domain to put the most official information is ideal, followed by a blog where you can insert articles translated by you, such as those of rxisk or those of online magazines, pssd testimonials, links to topics on the forum, articles written by you or reflections, recovery stories captured online, advice and invitations to join forces, and possibility to comment

my blog is this (currently the new pages are no longer found by google, btw)
http://disfunzionisessualipostssri.blogspot.com/
+ an English reduced version

medical literature list http://postssrisexualdysfunction.blogsp ... ature.html
current research questionnaires to participate in https://disfunzionisessualipostssri.blo ... cerca.html

rxisk pssd posts http://postssrisexualdysfunction.blogsp ... rxisk.html
among these I suggest you to translate above all:
https://rxisk.org/buried-alive-post-ssr ... tion-pssd/
https://rxisk.org/the-pills-that-steal-sex/
https://rxisk.org/a-pssd-story/
https://rxisk.org/pssd-patient-experiences/

these will give a picture of the seriousness of the problem from a more human point of view.

a news page https://translate.google.com/translate? ... to-al.html
to spur https://translate.google.com/translate? ... varsi.html

good luck : )
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Meso
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Re: Future directives & endeavors

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climb wrote: Tue Nov 10, 2020 4:52 pm
Meso wrote: 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?
It's perfectly possible add additional features or tweak the existing websites, we all just need to work together to discuss what else we want to communicate on the sites and how we are going to increase the profile of those sites.

Some of the people doing a lot of hard work to raise the profile of PSSD are not on the forum so often. If there are more people such as yourself who're interested in collaborating to raise awareness, I think we'd all welcome it.
I've contacted the person that you are suggesting. I will donate to the graphic designer and ad campaign, but it's a community effort as you have noted. We need to get together on Discord and discuss this.
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Firstprinciples
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Re: Future directives & endeavors

Unread post by Firstprinciples »

DrugsAreBad wrote: Sat Nov 07, 2020 10:07 am 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.
For these kinds of things a PSSD/PFS wiki like the Chronic Fatigue Syndrome community has built https://me-pedia.org/wiki/Welcome_to_MEpedia would be super valuable.

There was a first attempt to make a PSSS/PFS wiki https://pfs-pssd-research.org/index.php?title=Main_Page , but we weren't consistent enough with writing articles. Would be great to revive the project with a few more people (it's open for everyone).
Firstprinciples
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Re: Future directives & endeavors

Unread post by Firstprinciples »

Very important point that increases awareness.
b] I have several ideas and suggestions:[/b]

1) Google ad grant program
If you register as a non-profit organization, you can apply for the Google ad grant, which should be easy to get. The Google ad grant amounts to $10,000 [/b] Google ad budget free of charge and every month . It must include a link to a website of the organization. The PSSD assistance in Germany is only a few weeks away from the status of the charity, and they could receive the grant.

2) Wikipedia
From my own experience I can say that even doctors look on Wikipedia when they hear a new disease. If there is no entry, it does not exist for them. Wikipedia is often the first and for many people the most reliable source of information. So check to see if there is an article in the PSSD Wiki in your language, and if not, become an editor and translate the existing articles into your language.

3) Magazines, online news, guest blogging, television, YouTube
In contrast to Google or Facebook ads, where the FB campaign will one day end and with it the web traffic, permanent posts, articles and YouTube videos will remain forever and cause a slow but permanent increase in awareness. -> Short-term boost through FB ads -> Long-term organic web traffic with articles and online material

4) Twitter
As in many other areas, the community of people with chronic fatigue syndrome is a good example here. Twitter is full of doctors and scientists. Twitter allows for quick and easy switching between accounts. So if everyone had a Twitter account, we could communicate with hashtags like #PSSDtalk and retweet articles and tag researchers and celebrities.
Whatever we do, we should try to look someone in the face who has done this well in the PSSD community is Marc Rheinsdorfer @marc.reinsdorfer, https://twitter.com/reinsdorfer?lang=en he has greatly increased awareness of PSSD with his Twitter and medium. One does not need to take one's own face and name, a pseudonym and a computer-generated photo that looks like a human being. This is important because you can better refer to a face than to an abstract picture.

5) Combining awareness campaigns with fundraising
The best role model here was the ALS Foundation with its "ice bucket challenge". In the beginning, the main goal was to raise awareness and bring the disease before the eyes of Bill Gates.
There is a fascinating TEDtalk about how a single-family started the "Ice Bucket Challenge" which led to 115 million dollars in research funds in only 1 year (2014) https://www.youtube.com/watch?v=lr-mXnU ... hannel=TED. So when we write articles or give an interview, we should try to point out a place where people can donate to research. If we succeed in finding a creative initiative that spreads virally like the ice bucket competition - even better :)

6) Joint PSSD/PFS awareness group
Last but not least, it would be good to have a joint sensitization group of PSSD and PFS. Since we (PFS) have the same problem that we have a few but never enough people to work on a project, we should form groups that are both PSSD and PFS. Together we could create patient stories with a good story, we could exchange journalist and television contacts (a reporter who is interested in PFS is also interested in PSSD), we could even set up a charity just for PSSD/PFS awareness.

Awareness and fundraising are very closely intertwined. We are a few weeks away from becoming a charity and then reaching as many reporters and journalists as possible to raise awareness and use this opportunity to raise funds. I think we could raise public awareness if PSSD and PFS campaigns were planned at the same time. Does anyone have contacts with journalists and reporters that he or she could send me?

We need to step out of our shadows and into the light :)
climb
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Re: Future directives & endeavors

Unread post by climb »

[/quote]
I've contacted the person that you are suggesting. I will donate to the graphic designer and ad campaign, but it's a community effort as you have noted. We need to get together on Discord and discuss this.
[/quote]

Great, I think you're on the collaboration server, aren't you?
Perhaps once this meeting happens in December it'll be easier to use that server to get some things moving.
JLo22
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Re: Future directives & endeavors

Unread post by JLo22 »

https://www.psychologytoday.com/us/blog ... -condition


clane@northwestern.edu ( Christopher Lane PhD)


Here is a reporter who wrote an article on pssd.
lepardglass
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Re: Future directives & endeavors

Unread post by lepardglass »

Meso wrote: Sat Nov 07, 2020 6:04 pm Thanks for the replies, everyone.
climb wrote: Sat Nov 07, 2020 11:15 am 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?
10 years ago pssdforums.org was the first result on google, now not even on the first page results. Also the activity on the forum is about the same now. 10 years ago the number of sufferers was likely significantly lower, and the number of sufferers familiar with the internet was likely much lower, I don't know how to make sense of it.
Naczoz
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Re: Future directives & endeavors

Unread post by Naczoz »

Exacly! How come there are only ~600 people in fb group? 1,5 on reddit and same here? This is fucked up, nobody cares about sexlife or what?
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Meso
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Re: Future directives & endeavors

Unread post by Meso »

climb wrote: Fri Nov 27, 2020 8:06 am Great, I think you're on the collaboration server, aren't you?
Perhaps once this meeting happens in December it'll be easier to use that server to get some things moving.
Not yet, but I'm in contact with Emily1847 and Firstprinciples on discord and we all will regourp on one of the discord servers to discuss this real-time. I'd like to meet you there as well + everyone interested in actively raising awareness regarding this condition.
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