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: firstname.lastname@example.org
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:
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.