We need to clarify some things about the RxISK Prize and Research Fund. The Prize was established RxISK Prize in 2017 – see The Golden Rule, RxISK No-Nos, Relationships, Stigma and Recovery, Campaign and Challenge.
Some of us in RxISK have had a difficult few months attempting to set up a Research Fund for PSSD and other Sexual Dysfunctions. Banking rules have got more strict than they were over a decade ago when the Charitable Foundation that later supported the RxISK Prize was set up. Both our Bank and PayPal have effectively treated us like a Business and want to know the inside leg measurement of everyone involved and neither seem keen to talk to or deal with the other. The problem partly came at our end – the team managing donations have transitioned into other roles and we had to log a new set of people in with the bank, and PayPal.
Once things were finally sorted and the post went up, we had warm congratulations from supporters, who had been keen to see a fund supporting active research set up, along with donations, some of them large.
But we have also had some people get in touch saying why don’t we just move the RxISK Prize money over to the Research Fund – this post is about resolving possible misunderstandings.
There have been emails from five people or comments on posts and a forty-one person Reddit Thread. At present it looks like the five emailing have donated roughly $30 to the Prize between them, mostly have not completed RxISK reports so don’t get updates on what we are doing, and have never offered us any useful ideas. None of this is certain – as many people with PSSD and related conditions use aliases.
None of the significant donors have asked for a change and at present the administrative costs of moving $30 exceeds anything gained, and in the one instance we know of is not possible because donations to the fund in the US has pay-out terms and conditions under which payments were made which restrict the movement of the money to the winner of the Prize.
Some claim to be worried about accountability. They are unaware that over half of the 100K comes from four donations and two thirds from six donations. The Prize page gives a breakdown of where the money has come from.
An exchange on Reddit is typical of the kinds of things being said.
The bigger Reddit string is worth reading. It is Here. There is a lot of genuine desperation linked to the condition.
It is also clear that most people commenting do not have much idea about how to do research or knowledge about how breakthroughs are made – which is usually by accident. This is understandable – few people realize that paying people money to do research is like pouring water into sand.
I’ve not only got a background in lab-based research, along with getting grant proposals funded etc, I’ve interviewed most of the people who discovered anything in psychopharmacology including Nobel Prize winners. Very few of their breakthroughs stemmed from people doing the obvious thing.
Most of the research done is junk and a waste of money.
RxISK also gets attacked for not taking finasteride or isotretinoin into account and for not realizing that people with PSSD have so much more wrong with them than numb genitals.
So, lets recap on a few things and perhaps make one thing clear.
First, the Research Fund is not being left to build up to 50K Sterling before any research gets funded – the funds will go into use immediately.
Second, no-one out there knows for sure what research to do in terms of PSSD, PGAD, PFS or PRSD, so there is a real risk of wasting money and this is why we went down a RxISK Prize route first and will stick with this.
For the recent Diagnostic Criteria paper, we literally contacted everyone who had published anything on these syndromes and included most of them as authors. These are the people doing research in this area – all of whom know about the Prize and none of whom have claimed it.
We regularly have people getting in touch claiming to know the answer and wanting the Prize but in response to a request to prove it are never able to do so. If the people who know enough about the condition to be published in the area don’t claim the Prize it’s a safe bet that at the moment we still know very little about what is going on.
Part of the reason for the Prize is to save people who have PSSD from sharks who would try to make money from you or instill false hope about treatment options that then make things worse. A lot of scams have come and gone since the Prize was set u and simply pointing out that if these scammers were right, they’d have been able to claim the Prize, might have saved some lives.
We now have close links with Philip Roberts, Simon Breidert and others linked to PFS groups.
Initially though, the leading PFS group held us and others at arm’s length. Perhaps because they were all men, it looked like they thought they knew the answers and were not open to the suggestion that it might not be a great idea to put well over a million dollars in one research basket. This $ Million funded a study in Baylor University in Texas which did not produce the results the PFSers were sure it would – nothing at present useful came from it.
PFSers back then were only going to co-operate if we supported them to do what they knew was right – to the extent of them getting in touch and demanding we hand over the Prize money.
Attractive ideas can seem right but be a dead end. Beware people committed to a pet idea.
Simon Breidert has since come along and has been a breath of fresh air in terms of co-operation and common sense.
So why open up a Research Fund now.
The idea came when two people with PSSD who didn’t insist that they were right pointed to two areas of research that seemed interesting to them.
One pointed to Professor Guerrini. A link to thalidomide, which is part of her research, for all sorts of reasons was interesting. When she fished out an experiment done on sertraline 15 years ago, which showed the same result as thalidomide, it became more than interesting. This was a solid and unexpected lead. The solid and unexpected is worth pursuing.
Talking to her was also reassuring. She has an eye for the road less travelled but is also able to change tack if the results she gets call for a change of tack and none of her experiments require years of work and large amounts of funding.
Another perons with PSSD pointed us to Professor Christine Heim in Berlin – only one of the many things he has pointed us to and helped us with. We have been in contact with Christine Heim. The work she does is more expensive and will take more time to get off the ground.
Luisa Guerrini’s work and Professor Heim’s work offer the most interesting leads we have had so far and the first leads that have tempted us to think more work in these areas might be worth supporting.
As regards PSSD being so much more than numb genitals, as we are regularly told, we couldn’t agree more but as a research strategy numb genitals are great. Given the complexity of the human body, there is little chance of pinning down where emotional numbness for instance comes from or even what it is. Better to get people to focus on a few square centimetres of numb skin and ask them to explain that, perhaps finding something that might reverse the numbness.
The breakthrough may come from elsewhere but in terms of low-hanging fruit this is as low as it gets.
In the meantime, there are a lot of people unhappy that we are not using the Prize money. We hope you will now realise that keeping the Prize does not mean research hasn’t already started.
For people who have been worried, there is something you usefully do.
The prokineticin papers featured in the Holy Grail post Liu et al 1 and Liu et al 2 refer to work done in the laboratory of Professor Zhoufeng Chen at Washington University School of Medicine.
I have brought PSSD and the RxISK Prize to Professor Chen’s attention. Perhaps he is working on a link between PSSD and Prokineticin right now. But maybe he doesn’t realize what a major medical and pharmacological breakthrough finding a discovery for PSSD would be. Maybe he has no need of $100K.
You can find his email if you download the articles.
Anyone who is bothered about $100K sitting in the Prize Fund should consider emailing Professor Chen and let him know how debilitating this condition, about people you know who have committed suicide, and how many thousands of people there are who would rejoice if he and his team took an interest in it.
I’ve made Professor Chen aware there is a $100K he can pick up. I’m not likely to suggest this if the $100K has been diverted into setting up a RxISK office in the Caribbean – see image above and Reddit thread.
If Professor Chen finds an answer, we would have both a cure and there would be no RxISK Prize sitting there to bother anyone (once we sell the office in the Caribbean).
Perhaps Professor Chen has too much on his plate in which case there are lots of other people working on prokineticin.
Can I invite people to chase this, perhaps starting with asking Professor Chen to give them a list of other people working in this area. It would be great to have the energy channeled into tracking down some of these other researchers and emailing them to draw their attention to the Prize – maybe trying to beat Professor Chen to the Prize.
This would be a great way to realise the potential of the Prize to get others to work for us for nothing – unless we get what we want.
If you don’t have the money to donate, donate sweat equity by getting in touch with people who are doing work that might be relevant.
The $100K in the Prize is peanuts in terms of funding research. It won’t do much more than help fund a holiday in Stockholm for the Nobel Prize that the person, or team, who solves these problems is highly likely to get.
Meanwhile Luisa Guerrini is operating on close to nothing. If what she is doing looks as good to anyone else out there as it looks to us, we need you to donate, and reach out to friends to draw their attention to the work. We already have enough collected to help her start on this work but we need your donations to keep the work going.
The hope is that making clear that any funds donated will go into research immediately will alleviate most of the concerns that have been aired and that everyone can get behind the RxISK Prize and Research Fund. The Fund by donating.
The Prize by emailing researchers working in possibly fruitful areas to draw their attention to the Prize – there is every chance the cure is out there but someone just needs to realise it. In addition to chasing people working on prokineticin, our hunch is that researchers working on p53, p63, p73 or Cereblon would be well worth doing. This might mean chasing geneticists working to see if they know anything about the genes for these factors – do those who end up with PFS, PSSD or PRSD have a different genetic profile to those who don’t.
Those of you who have no money don’t have to offer these researchers money to gain their interest. There is a large pot of money sitting there two thirds of which comes from six donations that you can point to.
You don’t have to worry whether their research is likely to work and whether donating to them might be a total waste of time – if it doesn’t work they don’t get the money.
The Holy Grail © Nina Otulakowski June 2022
You need to click on the image to get the full effects.