Community Campaigns

pete · November 25, 2018, 2:07pm

Wanted to start a community campaigns project log.

Here we will record live and potential projects.

These are projects everyone can get involved in.

This thread will evolve as we go.

Current live campaigns:

1: Journalism. Accutane patients with libido loss side effects: contact journalism student Louisa Cavell. She is asking for volunteers: louisa.cavell@city.ac.uk

Can anyone help promote this idea to other members, at other forums, and so on?

Be sure to just send her an email with your situation, also.

2: Community building. Make users, particularly from the Accutane and PSSD communities, aware they are welcome to join propeciahelp. Please bear in mind not to recruit against the wishes of the patient site in question, but make users and administrators of forums of those suffering that they are welcome to join and participate in our future projects. There are some other forums out there, but Propeciahelp.com is the place we go in hard on our problem.

Can anyone help on boosting our numbers and thus visibility? We need people to contact users and let fellow patients know.

3: 23AndMe Result Research. Patients: please get a 23AndMe test done. This is an active research project that you can be involved in. If you’ve had a test done, please follow the guidance for submissions here:

Why is this important? If we can show that there are genetic similarities between post- Propecia, Accutane and SSRI users - it hugely increases our chances of national-level funding. Imagine what could get done if national research money was available. Picture the speed of change in our area.

NUMBERS at 25th November 2018:

TOTAL: 47
PFS: 33
PSSD: 14
PAS: ?

FIRST GOAL: 50

We are close - but still slightly out of reach! We need more tests! Especially Accutane users.

You know what to do…

4: Quick email to MHRA. SSRI members should contact their rep in the European Union. The MHRA (EU medicines regulator) is reviewing sexual side effects associated with SSRIs. Members should take the opportunity to email their country-representative. The MHRA review is taking place in September - so there’s not much time!

Link to MHRA contacts:

5: Back the RxISK.org petition on Accutane

Dr David Healy has petitioned the FDA to recognise sexual dysfunction in Accutane’s US product label. This follows a change in the UK label late last year, to note side effects of erectile dysfunction and libido loss.

Back Dr Healy’s petition using this link - hit “Comment Now!” to register support. Every comment counts towards support of the petition.

Why is this important? In the UK the regulator ordered the label change after work from Accutane patients and parent groups. The same can happen in the US.

GET INVOLVED ALL.

pete · July 21, 2018, 2:46pm

Dubya_B · July 21, 2018, 11:58pm

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 acne.org thread. Is that correct that she is strictly looking for people from the UK at the moment? …Just confirming.

Thanks Pete!

pete · July 22, 2018, 7:42pm

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.

pete · August 5, 2018, 10:37am

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

pete · August 5, 2018, 10:54am

Ordered my 23AndMe test. Should be interesting…

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

Let’s get another 4…

pete · August 5, 2018, 10:25pm

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

pete · August 27, 2018, 4:55pm

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.

Lw77 · August 27, 2018, 7:20pm

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?

pete · August 27, 2018, 10:15pm

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

Bartholin · October 10, 2018, 7:46pm

Thanks for the link.

pete · November 25, 2018, 12:58pm

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.

pete · November 25, 2018, 2:06pm

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?

Rmoney96 · November 26, 2018, 9:31am

Thank you already made multiple comments

axolotl · November 27, 2018, 4:03pm

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.

pete · November 27, 2018, 4:16pm

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.

pete · November 27, 2018, 4:48pm

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

Cooper · March 13, 2019, 11:23pm

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

slick1 · April 19, 2019, 12:53am

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

Dubya_B · April 19, 2019, 3:26am

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.