PSSD Forum

squirtleSquirtle wrote:As a North American member of this forum, I just wanted to give a shout out to thank you guys for your hard work. Thank you for getting involved and speaking for all of us around the world.

I promise to do my part over here in Canada. In the new year I am planning on reaching out to Healy's team which is based in my city, and seeing if I can get them to help fund the research proposal that my neuroscientist brother is currently working on.

Good show, chaps! Let the rest of us know if there is anything we can do to help.

Thanks for your kind words and the work that you are doing! We need everyone here to work together if we’re going to beat this! Hope your projects go well, keep us updated!

Frog wrote:IMPORTANT-please check if your MP has been re-elected, if not please contact your new representative. Let me know when and who please. If you haven’t already and are in the UK please contact your MP. There is a letter template in this thread

I have diarised to do this in Feb. I think there is a benefit in waiting - I imagine all new MPs are going to be bombarded for their first few months.

I have recently contacted MHRA regarding the number of PSSD reports that they have received so far. They replied saying, that 155 PSSD cases have been registered in the UK alone, up till 2019.
This means, that there's many more than 5 of us here who live in Britain with this horrible condition, and can get in touch with their MPs. And also, this complication is massively underreported, as NICE doesn't not contain any information about it.

If you suffer from PSSD and live in the UK, please do speak to your MP ASAP. We need to fight.

There’s a template letter earlier in the thread, will take 5 minutes to alter it to suit your case. With potential research on the way this could be very useful. Even if you’re not from the UK you can still contact your representatives. No excuses!!!!

Quick update for everyone, Mr McCabe has said he’ll get back to looking into this after things with Covid have calmed down as he doesn’t want to put any extra pressure on the health department which is understandable and he also wants PSSD to get the time it deserves which would happen currently

Just letting everyone know some good news that I heard from my MP, who also offered to report to the Department for Health.
I've asked him to speak to Steve McCabe (Frog's MP) and work with the other MPs planning to report this.
Hopefully they'll be able to take some actions soon once they're feeling less stressed by covid.

Hi guys,

We’re going to try and get some momentum with this project again.

Even if you’ve already contacted them, could you please contact your MP again. If they express a willingness to help it would be great if you could post their name so we can get a good network together. If you’d rather PM the name that’s fine too

If you haven’t contacted them yet, there’s a template in this thread or you can use the one from the Rxisk post “the politics of PSSD”.

Thanks guys!

Only had one response so far, let’s keep this at the top of the forum. It’s easy to do and endorsed by Rxisk!

Hi everyone,

I'd like to reiterate what Frog said.
Please can everyone in the UK who has written to their MP contact either Frog or I and let us know who your MP is. Please can you then call their office to follow up the letter. I'm going to call mine tomorrow.

We really need to establish an effective line of communication with an appropriate person in Department of Health. We can't do this directly because we'll just end up getting referred to pharma-covigalence, who aren't helpful. Therefore we have to either get access through our MPs, or we have to encourage our MPs to discuss this in parliament, which is what was supposed to be happening before COVID.

If you haven't written to your MP, please take a moment to follow the link and do this. Calling them directly is sure to help.

Thanks!

Still only one person who’s contacted their MP since we relaunched this. Considering how easy it is and the difference it could make, I really don’t understand why more people aren’t getting involved. There’s a template in this thread and on the Rxisk website. It takes 5 minutes to fill it out. Please let us know when you’ve done it so we can get a good network of MPs together!