UK Association and Website for PSSD etc sufferers

[pssd2020]

Hello everyone

 

UK Association and Website for PSSD sufferers - 

 

We are forming an association for sufferers of PSSD in the UK with the goal of increasing awareness of PSSD and all other related enduring problems having withdrawn from antidepressants.

 We're working with other PSSD associations from around the world. The website will be ready soon, and we'll then be contacting clinicians and researchers to attempt to raise the profile of PSSD and encourage dialogue, research etc.

If you're interested in joining and being updated, please join us on discord:

https://discord.gg/U6EphsV

 

The website will include stories of those suffering with PSSD. It would be particularly helpful to have sufferers from the UK to contribute. However, if you're from another country where your voice is not heard, we will include your story.

 

 

Here are some guidelines to help:

It would be helpful to include:

- Something about what your life / health was like before PSSD / antidepressants to give context.

- How you got PSSD

- What your symptoms are

- What your experience has been with attempting to get treatment.

- The impact that PSSD has / has had on your life on the lives of people close to you.

- What you're hoping might change having told your story.

- A thank you to whoever is reading.

- I suggest that you try to keep what you write below 1000 words. The goal is to express your feelings and experience but try to not go on so long that you might lose the reader's attention.

 

Here are some examples from the Canadian site to help you: https://pssdcanada.squarespace.com/our-stories

If anyone has relatives or someone else close to them who would like to contribute something about how this has affected the person they care about and how it makes they themselves feel, that would also be great.

I know that many of us feel (justifiably) angry at pharmaceutical companies, psychiatrists, doctors etc. However, please try and leave accusations, blame, anger about lack of action out of your story because this is likely to undermine what we're trying to achieve. We want clinicians and researchers to empathise and to try and help us. Therefore, the tone is important. Busy people are less likely to want to try and help if they feel like they're being attacked. We will address the need for pharmaceutical companies to be held to higher standards regarding the risks of antidepressant use elsewhere in the site and within the aims of the association.

Thank you and Best wishes to everyone!

 

 

Edited July 22, 2020 by ChessieCat
removed email address

[pssd2020]

Hi everyone

The website is finished. I will make it live once we have more contributions.

We need more people to send their PSSD / protracted antidepressant withdrawal stories / experiences. This is most likely going to be part of the pack of information that the association will send to researchers and clinicians. I want to start reaching out to people soon while I am less busy with my job, so I would really appreciate it if people can send their stories as soon as they are able to!

We need a minimum of 10 (UK based or UK born people living abroad) people's stories to add to the site to begin with. I'd also welcome stories from people from other countries, but we need a strong core from people from the UK's stories to back up what we're doing.

You can either:

Send as a dm through PSSD forum
Send me a PM at SA and I will provide an email address
Join us on the discord server and send me a private message

send me a message or file through surviving antidepressants
You don't need to add your real name if you don't want to, it's up to you

 

https://discord.gg/72TYWVb

 

 

Edited August 1, 2020 by ChessieCat
email removed from previous post, added send PM, removed background highlighting

[pssd2020]

Hi everyone

 

New UK PSSD Website is now online:

 

www.pssd-uk.org

 

The site intentionally follows a similar format to that of the Canadian PSSD site (big thanks to Emily for that), but is a bit different and UK specific.

 

 The goal of the site is to act as a reference point and also as a supportive tool to assist with activism. We're collaborating with all the other patient groups, so we'll update everyone any time something interesting happens.

 

As per my previous posts, we'd like 10 people's stories to include on the site. This is essential because we want to refer clinicians, researchers, and other external bodies to our site. 5 received so far. Please get in contact to contribute. It's anonymous and would really help the cause!!!

 

Let me know if you have any constructive feedback about the site.

 

I've done some initial work on establishing which governing bodies in the UK have the responsibility and potential to help change specific things that could help make progress.

 UK pharma-covigilance are aware of the existence of our association and have asked me to keep in touch. UK sufferers will probably already be aware that they were involved in the work that led to PSSD being acknowledged by the European Medicines Agency.

 They informed me that they are currently conducting an investigation into the sexual problems that can be caused by isotretinoin / accutane, and have said that depending on their findings, this could result in follow up investigations into the effects of antidepressants and finasteride. I can't say I have much confidence in any organisation associated with the UK government, and the mechanisms for regulating pharma clearly need overhauling but it was good to hear that an investigation could eventually be on the horizon, so thought it would be good to let people know.