Members of the British parliament
In October 2019, we were contacted by a British PSSD sufferer who had done some excellent work in getting his Member of Parliament (MP), Steve McCabe, interested in the condition. We were informed that Mr. McCabe wanted to get a large group of MPs together to try and get some support for sufferers and hopefully stimulate interest in finding treatments. He was in the process of contacting people such as the health minister and NHS England.
We contacted all UK based PSSD sufferers on file, asking if they would write to their MPs to ask for their involvement. Unfortunately, a general election at the end of 2019 meant everything had to be put on hold as some MPs might not have been re-elected. Steve McCabe was re-elected and so this seems like a good time to restart the initiative.
We need as many of British people with PSSD as possible to write to their MPs and ask for their help. A template letter is provided. This can be adapted if you are a friend or relative writing on behalf of someone else who has PSSD (or PFS or PRSD). Also provided is a copy of a letter from Professor Healy to Professor Rasi at the European Medicines Agency, to be enclosed with your letter.
Even if you are not planning to write it is worth downloading these two letters – you may figure there are better ways to do things than we have suggested here.
It would be good to send a copy of everything to Mr. McCabe as well as your own MP. This will help to keep him in the loop and should also make it more difficult for your MP to ignore you.
For those who have already written to an MP, you might want to chase them up with another brief letter to remind them that the initiative is still very much ongoing and that we are looking for their involvement/action.
PSSD isn’t just a UK problem and therefore this initiative shouldn’t be limited to the UK. Our 2018 paper on 300 cases of enduring sexual dysfunction included reports from 37 countries across six continents. We now have close on 600 cases.
It would be wonderful if anyone reading this from Italy and Germany which have very active groups lobbying on this issue, as well as anyone from any European country, the United States, Canada, South America (Brazil in particular) and elsewhere in the world, did something similar – getting in touch with their local political representative.
BBC documentary not going ahead
Also in October, we were contacted by a journalist involved with the BBC. They were looking for people to take part in a new documentary about the difficulties of dating while taking (or after stopping) antidepressants due to sexual side effects including PSSD.
They said “The BBC understands that this is a very sensitive subject matter to discuss and will be considerate of this during filming. We can certainly approach filming in a way that would make you non-identifiable if desired.”
We contacted all of the UK based PSSD sufferers on file and some of you expressed an interest in taking part. Unfortunately, we have since learned that the BBC is no longer making the documentary, although we understand that the journalist behind the project intends to pursue the production of the documentary elsewhere.
There have been other approaches by the BBC and to the BBC and the general message from them is that they don’t want to put people off taking their antidepressants. This is truly weird and the media would not act this way with anything else in the world we buy or take except medicines.
In the last few months there have been several new published papers involving PSSD that may be of interest if you haven’t already seen them.
The first one was “Post-SSRI sexual dysfunction: Patient experiences of engagement with healthcare professionals” – see this blog post for more details. As the title suggests, it was a study exploring the interactions between PSSD patients and healthcare professionals when trying to seek help for the condition.
Next was “Post-SSRI sexual dysfunction & other enduring sexual dysfunctions” which was published in Epidemiology and Psychiatric Sciences. It outlines the persistent sexual problems following antidepressants, finasteride, and isotretinoin. The paper is open access and can be viewed on the above link.
The third paper was “Post-SSRI Sexual Dysfunction: A Bioelectric Mechanism?” by Healy, LaPalme, and Levin. It presented the finding that a brief exposure to an SSRI induces long-lasting changes in the bioelectric cell properties of planarian flatworms (an important model for human neurophysiology and pharmacology) and suggested that this may contribute to the enduring effect seen in PSSD. The paper is available online but behind a paywall.
In January 2020, “Antidepressants and sexual dysfunction: a history” was published in the Journal of the Royal Society of Medicine. It included details of PSSD and can be viewed on the above link. This also features in a video, Antidepressants and Sex: a strange story, which you can access.
We are continuing to receive a significant number of RxISK Reports about PSSD. If you have the condition and haven’t yet completed a report, please consider filling one in so that we have your details on file and can contact you if there are any initiatives that you might be able to get involved in.
We sometimes receive reports that just say “PSSD” in the main side effect description. As this doesn’t give us enough information, we try to follow these up by contacting the person for more details. Unfortunately, we often receive no response and so these reports have to be excluded from our list. If you are completing a RxISK report, we would be grateful if you could provide details of your symptoms rather than just writing “PSSD”.
Donations to the RxISK Prize seem to have stalled at around $63,000. Thank you to everyone who has donated so far. We had hoped that a lot of people would donate small amounts and therefore there would be little financial burden for each donor and the target would be easily reached. However, the donations to date have been made by a smaller number of donors who in some cases have given huge amounts of money or set up regular payments. We have also received significant contributions from people who don’t have the condition, but who wanted to help.
Over 150 individuals have donated to the RxISK Prize, but nearly 600 people have reported PSSD, PFS and PRSD to us, which adding in their relatives and friends means we could reach the target if everyone involved gave $10. If we could reach the target of £100,000, it could help to make an impact when trying to gain the interest of journalists, politicians, and lawyers.
Some people have suggested that even if the $100,000 target was achieved, it wouldn’t be enough money to fund studies into a complex problem like PSSD – but this isn’t the point. One of the problems with standard research is that a study can typically only investigate one thing at a time, and at the moment we don’t know exactly what to look for. It would be very easy to spend $100,000 on a study that would tell us nothing.
However, there are already people working in areas of science and medicine who may hold important keys to better understand PSSD. For example, the recently published paper in the journal Bioelectricity introduced the condition to scientists whose work involves the electrical properties of cells – something that may be involved in PSSD. Having a $100,000 prize would encourage people to think about how their own research might help to provide some answers.
The RxISK Prize is an still onoing venture and we hope that people will continue to donate. To learn more and to donate click HERE.
Retractile testicle on SSRIs?
This item has nothing to do with PSSD, but this seems like a good place to mention it.
Retractile testicle is a medical condition in which one of the testicles is intermittently pulled up into the body by an overactive cremaster muscle. The testicle can appear as a small lump under the skin of the lower abdomen and has to be gently pushed back down into the scrotum.
Retractile testicle is typically regarded as a naturally occurring problem that happens in some people, but we have reason to suspect that it may also occur as an SSRI side effect – most likely during sexual activity.
It may disconcert anyone who experiences it and wonders why it’s happening, though like many unusual SSRI side effects, the person may not connect it to the drug they are taking. At this point we don’t think it continues after the antidepressant is stopped.
If you began to experience retractile testicle after starting an SSRI despite having no previous history of the problem, please tell us about it by leaving a comment below or better again filing a RxISK report.
Let us know whether it went away when you stopped the drug.
[It would be great to ask Harvey Weinstein about this – a number of the women who have accused him of assault have described his genitals in detail and the descriptions are not inconsistent with this].