Community Campaigns

pinned #2

I would be more than happy to help in both respects. Our brothers and sisters at the new PSSD forum seem open to discussing our similarities now more than ever since the latest paper from Prof. Melcagni.

Will also take care of spreading the word about the interest in post-Accutane interviews on PASforum and another mention in the thread. Is that correct that she is strictly looking for people from the UK at the moment? …Just confirming.

Thanks Pete!


Great! Cheers man - means a lot. Top to hear about the PSSD patients’ interest.

About Louisa - from my last discussions with her, she was interested in talking with everyone. So, not just UK, for her. Someone mentioned she is not so fast replying - I believe she is ultra busy with the work. Definitely email her though.


Added a new one for the 23AndMe data. Man it’d be great if we could get some more of those, for research.


Ordered my 23AndMe test. Should be interesting…

So… this is our first of 5 users from our target.

Let’s get another 4…



Special thank you to Dubya_B in this thread, for his work on the Community building project.

I think his invite over at the PSSD forum encouraged a mod named Ghost to join us here. Welcome, Ghost!

Ghost is now talking with Awor and Axo on the 23AndMe project. From his posts, Ghost has interests and a background in science. Hopefully he can help out with the 23AndMe project!

This is great. It shows that our actions can grow the network of great people attacking our shared problem.

Let’s keep things rolling. As we get more and more success; we will snowball.

Anyone is free to join in these projects with us. Just pick something you want to spend time on and get rolling! Any small amount of time or action is deeply welcome.

“Confront the difficult when it is still easy. Accomplish the great task by a series of small acts.”

  • Lao Tzu

Thanks to user @Lw77 on here for bringing this up:

Looks like a big, big opportunity.

Imagine the impact if we get erectile dysfunction added to the side effects list. Right after Accutane has the same. Governments will take more and more interest. More and more momentum.

I’ve added it to the campaigns list.

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Pete, posted this link also on the facebook group of SSRI sexual dysfunction.
One question: can we do a signalation to MHRA even if we are outside of UK?
Me and my fellow sufferer from Italy have conta ted our country responsible for EMA (European Medicines Agency).
Do you think it would be useful also to write to MHRA?

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Yes - fire them an email. It is very helpful. Thanks, @Lw77!


Thanks for the link.

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Boosting this thread with a new link to Dr Healy’s FDA petition on Accutane.

This is top work from Healy - please add a comment using the link above. This shows support to the petition and may mandate a US label change. Community campaigning from various groups led to the label change in the UK.

We can do the same again. Get involved, guys.

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Have added some numbers from Awor’s recent thread - for the 23AndMe campaign.

Man, it would be cool if we could do some kind of visual thing. For the front page of the site. Some kind of counter-type visual / graphic, to show where we are - and the first goal of 50 samples.

Anyone know how to do anything like that?


Thank you already made multiple comments :slight_smile:


A quick word on the survey: Technical delays and the need to integrate feedback from the leader of the Lupron community have bumped this back slightly but I am still trying very hard to get the beta in the hands of the testers in the coming days.


Nice work on this, though, I’m sure it’ll advance our situation - plus the feedback will make it more useful with the Lupron users involved.

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13 comments on Dr Healy’s FDA petition now. Rolling along nicely.


Reported my story to that journal thing. I don’t know how can i be helpful with this but i just did it.


Do you need just to write her your story ? is it anonymous ? Is it will be published somewhere ?


Hi slick. @pete’s career has been keeping him extremely busy the past few months, but I’ll attempt to answer to the best of my knowledge.

I believe that is all that was asked was to provide her your story and include dosages and time frame of usage and development of side effects. If you have a fleshed-out member story here, then 3/4 of the work is done already. It will be kept anonymous if you wish and will be published in an academic publication. I am not certain if this is still on the table; though, it could never hurt to be proactive in the event it might respark her interest.

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Hi @slick1 - sure, I’d still email Louisa. I’ve got to update the list because it’s been live a while. There are new opportunities emerging.