PFS Network’s main concern with Melcangi is that his animal model of PFS is inaccurate and will not translate to human PFS sufferers. Thus, research dollars may be needlessly wasted.
PSSD Network is currently raising money so that Melcangi’s team/lab can do similar research for PSSD. The PSSD Network’s webpage suggests that Melcangi will be using male rats (given the SSRI paroxetine) as a model for PSSD. The concerns raised by PFS Network could also be applied to the proposed PSSD research- there is the potential that research dollars could be better spent.
I think that both the PFS and PSSD communities greatly appreciate Melcangi’s scientific contributions. However, they also have an interest in making the most of their research dollars. So, in the interest of trying to fund the best research opportunities, perhaps the PSSD community should start a dialogue about how they can best do that.
Backstory
PFS Foundation is a major player in the PFS scene. From what I understand, members of the PFS community had a different vision and eventually fully splintered off into a different organization - PFS Network. PFS Network has released a public statement about PFS Foundation’s announcement that Foundation would raise money to fund Stage II of Melcangi’s research.
The PFS Network statement is here:
The Foundation announcement is here (and also archived at https://archive.ph/fFhSj).
The PFS Network team has taken the extraordinary step of not allowing posts that solicit funds for the Melcangi project:
However, given our fundamental concerns, we cannot allow patients to use our platform to solicit funds for this. If you wish to discuss the study, you are more than welcome, but any direct attempts to solicit funds will be removed.
Animal models
If you give male rats finasteride, is that a reasonable model for PFS? Is that a reasonable approximation of PFS in humans?
We know that most finasteride users don’t go on to develop PFS. So, there is a question as to what the rats actually have. Do they have PFS?
Without going too deep into the science (see awor’s take), there is an argument that Melcangi’s methodology is unlikely to result in research that will translate into usable findings for human PFS sufferers. A similar argument can be made for PSSD and Melcangi’s rat model for PSSD.
The PSSD Network has this to say about rat studies versus clinical studies:
ARE CLINICAL STUDIES BETTER THAN RAT STUDIES?
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A systematic review of 14 rat studies suggests that rats can develop persistent sexual dysfunction from taking SSRIs. This indicates that PSSD can occur in rats.
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You can read the review (DOI: 10.3233/JRS-160668) for yourself. The review looked at the SSRI-induced risk of less mounting behaviour, intromission (penetration) behaviour, and ejaculation behaviour.
- It is not a review paper on the validity of the animal model for human outcomes.
- Of the 14 studies, 1 was for SSRIs given during adulthood and 2 were for SSRIs during the adolescent period. The 11 remaining studies were for SSRIs during the newborn (neonatal) and/or before birth (prenatal) period. Most of the studies have SSRI treatment timing that is not relevant to the PSSD sufferers in support groups as they were exposed during adolescence or adulthood.
- It does not seem to explore the same PSSD that affects those in PSSD support groups.
My opinion
Patients should strive for high standards because ending the suffering should be the priority. At the same time, they shouldn’t be too critical of researchers or advocates who do not reach those high standards. Patients should strive to put money in the hands of exceptional people and by definition only a small minority of people are exceptional. And realistically, there will be a lot of failure (that’s just how science is).
Patients should have high standards without being too hard on people.