Collaboration with post-SSRI victims

General Discussion Media & Awareness
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#1

I read some talk of possible collaboration with victims of SSRI induced sexual dysfunction. I remember reading an article about a mother (who is a nurse) who spoke out against SSRIs. Apparently her son is suffering from similar side effects due to being on Paxil and is a moderator on paxilprogress.org.

Laurie Yorke
safepatientproject.org/story/laurie_yorke

There is also Gwen Olsen, who lost her niece to suicide (caused by SSRIs) and from what I understand she herself (as well as her husband) still have side effects from SSRIs.

youtube.com/watch?v=AazObF_pHSU

If any of you have ideas on how to collaborate with these people, please post here. If we put all SSRIs, accutane, and propecia sufferers into a group (which will no doubt be a massive one), I’m sure there are doctors/scientists who would be interested in starting another study here in the US independent of the PFS research (or in collaboration with, either way). It would essentially be research looking into a new disease caused by medication.

#2

If someone here knows computer programming or web development, they can create a site similar to propeciahelp, but more general. For example, it can be a website where people can register and state the medication they used (propecia, finasteride, accutane, etc.) the timeframe they used it for, their side effects, and any testing (hormonal, neurotransmitter, nandrolone, etc.) they have. Then we can promote a link to that site to all websites that have people posting about their experiences (paxilprogress, allthingsmale, etc.). I think this would be a huge step towards gaining awareness and support. If we can collaborate with so many people, it is much more likely that we will get doctors and scientists interested in our problem, more likely to get more research projects set up, and more likely to get funding.

Part of our problem is that we are so scattered. The launch of the PFS foundation was due in part by the communication between people in the same predicament. If we got so many people together, and if we had spokespeople such as Gwen Olsen rooting for our cause, I guarantee more would get done, and much quicker.

Also, one thing I want to note, despite being very different medications, Accutane, Propecia, Vioxx, etc. cause similar side effects in different people. For example, SSRIs, Accutane, and Propecia cause very similar sexual dysfunction and brain fog. Accutane and Vioxx both have been known to cause gastrointestinal diseases. There may be similar mechanisms at play here. These medications may disrupt normal physiological homeostasis that results in similar long-term side effects. I’d be interesting to see if an SSRI sufferer or Accutane sufferer has similar gene expression differences, neurosteroid deficiencies, etc. that they found in Italy about PFS sufferers.

#3

I wish i had the skills and equipment to set up such a website. A huge database that contains symptoms, time of use, drug used etc by individuals is a great idea.

More specific websites (Propeciahelp etc) could be linked off it.

#4

I believe that there is a plan along these lines already, though I have no idea when it will emerge.

I have to say that PSSD seems a lot milder and more infrequent than PFS. With accutane the sides are very similar as is the crash pattern, but I’ve never read of someone with PSSD also having muscle wastage, gyno, or even brain fog. It seems to be mainly ED, libido loss and anhedonia although they do mention testicular shrinkage.

#5

Tim191, thats what I was thinking too. Propeciahelp, paxilprogress, could be linked to the site.

Luckfax, there have been some seriously horrific stories. Gwen Olsen’s niece lit herself on fire with oil. PSSD sexual sides are remarkably similar to ours as well.

I keep hearing things like, “this is going on” or “its in the pipeline”… where is it? Why doesn’t someone post it? I would make the site myself but I have zero experience in computer programming or web development. I hope we can put up the site and thats its purely informational. No fighting and arguing, simply an online database that shows the number of people suffering, their sides, tests etc. That way doctors and scientists can go there and quickly access the information they want to see. We’ll leave the bickering for propeciahelp.

#6

My crash happened when I combined Propecia with Fluoxetine.