Does finestride lower cortisol like accutane?
I’m sorry to hear that. The guy I knew was in the same situation - bad side effects from Accutane, then further damaged by Trazodone. He ended up unable to function day-to-day. A horrendous situation.
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I am getting by otherwise, but have effectively lost all sexual sensitivity. I am holding out for a cure. But it seems like basically the only person trying to do anything is awor and the other mods. It’s as if no one gets that we are all screwed unless we do everything possible to get research funded.
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Various people are helping, besides us staff. What I personally also find very encouraging is that increasingly collaboration is happening between this community and the PSSD community. Even if many may not be convinced about a common root cause at a biological level, it at least has become obvious to most that the syndromes look pretty similar from a clinical perspective. I feel working together across communities will eventually give our efforts a much needed boost.
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It would be great if people could all agree on a thread where tasks might be recognized and assigned to members of the community. For example, has anyone engaged the Accutane community on places like acne.org to tell them about the potential commonality of syndromes as well as our 23andme study and survey? If not, then someone should do that. I would be happy to myself, even though I basically have 3 full time jobs right now.
I’m glad you are optimistic about the communities becoming more unified. Just out of curiosity, has there been any particular activity in that area that I might not be aware of? I wasn’t aware that anything has actually been going on. Rather I thought we here have been talking more about that it should happen rather than is.
Yes, we’re working on the 23andMe together, for example.
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Yes, this is an idea we have had a while back. We actively encourage members to get involved in our projects - and have a board for this - the Community Projects board.
We’ve got a thread here where users can freely work with us on tasks…
We are continually seeking people with useful skills (e.g. statistics; SEO; e-marketing) so if you can offer anything, maybe send us a message?
Most of the staff helping on the site have come onboard that way, then have found a niche helping out with community engagement, simple blog posting, drafting site content. Others have got more skills in computer tech and worked on impressive projects like putting the survey together, on this site.
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Hey @vkg1
Just to answer this, as I think you mean taking on tasks relevant to helping the initiatives we already have, you could certainly start a thread to delegate tasks about things like you give an example of there. The survey is the most important thing we have, and it would be absolutely fantastic to get more isotretinoin contributions as a priority (although every one helps).
Within the staff we have structured tasks and operate on delegation. As awor and I do a lot of the heavy lifting (site operation and maintenance, survey design and technical design, analysis and results organisation, significant literature review, scientific contacts), we absolutely rely on the fantastic and constant work of the moderator team. Certain mods like @greek spends a lot of time helping indispensably day to day on the community level, @pete focuses on great stuff on the blog, and @Jaime has taken a role liaising with media/organising media projects. @Northern_Star has been doing great outreach to get the PSSD communities to participate in the survey and @Dubya_B is starting on the 23andme with others to see if there’s a chance of an interesting result there.
Obviously more are involved, but if you have ideas or can lend a hand relevant to their areas, you can also always message the appropriate moderator to lend a hand. It is appreciated, it’s just it’s not always going to be instant given the workload on our plates.
Best,
Axo
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