ACTIVISM ACTIVISM ACTIVISM

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GIXXER
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ACTIVISM ACTIVISM ACTIVISM

Unread post by GIXXER »

Like the title says we need more activism. I believe in the ripple effect. The small things we do today can have a huge impact in the future. It really is on us to spread the word about PSSD. We need to form a strategy and stick with it. Whether it be social media outlets, posting on message boards, contacting the proper facilities in our own countries, changing the google search so that PSSD appears when someone does a search on antidepressants. These are just a few ideas of possible many. PSSDforum has over 700 members if each member spent say an 1 hour a week on some form activism thats 700 hours a week, 2800 hours in a month, and 33600 hours in a year. That would definitely change the direction of PSSD. Our other option is to sit back and do nothing and in 1 year we'll still becoming here looking for a cure and help. Lets get serious about this.
fema4psyciatrists
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Re: ACTIVISM ACTIVISM ACTIVISM

Unread post by fema4psyciatrists »

I agree. Who is willing or elected to run a twitter account? Maybe that's a good place to start as the first social media outlet...

Just a suggestion, but what do you think? Didn't somebody here already make an registered charity account in Germany?
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GIXXER
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Re: ACTIVISM ACTIVISM ACTIVISM

Unread post by GIXXER »

who cares make up a twitter account of your own. The more twitter accounts the better. Does PSSDForum have its own twitter account?

My recent review on a website was actually posted

https://www.everydayhealth.com/drugs/effexor/reviews
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anacleta
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Re: ACTIVISM ACTIVISM ACTIVISM

Unread post by anacleta »

I throw some ideas (sorry for my English):

Point out your presence / existence of pssd sick through comments, on the forum, on rxisk.org etc. "the more, the merrier." Do not be silent and get in touch with other PSSD patients.

Participate in the questionnaires that are proposed (Melcangi, Cosci ..) and the reporting forms that we have available (Pharmacovigilance agencies, Rxisk.org, petitions ..)

Find through the internet (pubmed, associations, etc.) neuropharmacology researchers from all over the world or at least from your country, who have already been interested in and engaged in studies on psychotropic drugs and sexual dysfunctions, epigenetic mutations, neuropharmacology ... send them a good email to inform about post-SSRI sexual dysfunction and ask if they know it and if they can be interested in investigating it through studies.

Collective e-mails signed with the name and surname of all of us, to be sent to the competent government bodies (pharmacovigilance agencies, health institutes, associations, etc.) underlining the gravity and urgency of highlighting and tackling the problem.

Donations: if you have funds to make available to the research you present this; David Healy is raising funds that (if they will not reward those who will find the cure) can be used to fund studies on PSSD. Other researchers could also start targeted studies, if only they had funding. An Italian boy with PSSD has financed the important study on which Melcangi is working with 50,000 euros.

If there were an artist among us, like a director, a musician... he could highlight the pssd to a wider audience through his artistic work.

Collective demonstrations with signs and shouts, or hunger strike under the buildings of the pharmacovigilance bodies! An action of this kind would also attract media attention.
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Ghost
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Re: ACTIVISM ACTIVISM ACTIVISM

Unread post by Ghost »

EVERYONE comment on the FDA Petition, and share it with AS MANY PSSD people as you can think of. Whatsapp groups, foreign pages, facebook groups, etc. We need everyone.
- Medical Student & Friendly poltergeist - Lexapro Sept '14. [Hx] [PSSD Lab] [r/PSSD] [Treatment Plan] - Add "Ghost" in replies so I see it :)
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