The RxISK Prize was launched on September 12, 2017. It was a campaign to raise $100,000 USD which would be offered as a prize to anyone who could provide a cure for post-SSRI sexual dysfunction (PSSD), post-finasteride syndrome (PFS), or post-retinoid sexual dysfunction (PRSD).
The possibility of a research fund had been considered, but despite having chased numerous leads and talked to various researchers over the years, there still weren’t any promising research opportunities that would provide good value for money and produce meaningful results that would tell us something useful about the conditions – either in terms of the underlying biology or potential treatments.
These persistent sexual dysfunctions have much in common in terms of symptom profile and onset. We had drawn comparisons between them in our 120 Cases paper, published in 2014. To our knowledge, this was the first paper to report on persistent sexual dysfunction after stopping isotretinoin in the medical literature.
The idea with the Prize was that a treatment for one would likely produce benefits in all of them. It would hopefully incentivise researchers to consider how their existing work might be utilised to help these conditions. For example, previous research on thalidomide is now being used to uncover things about SSRIs that we didn’t know.
We also used the campaign as an opportunity to raise awareness by contacting various people and organisations. This included a UK Member of Parliament, numerous journalists, and those listed below:
Pharmaceutical companies
- Pfizer
- Bristol-Myers Squibb
- Merck
- Johnson & Johnson
- Eli Lilly
- Gilead Sciences
- AbbVie
- Astellas
- Takeda
- Mylan
- GlaxoSmithKline
- Astra-Zeneca
- Roche
- Novartis
- Sanofi
- Lundbeck
- Alkermes
- Shire
- Allergan
- Novo Nordisk
- Bayer
- Boehringer-Ingelheim
- Teva
- Sun Pharmaceuticals
Associations
- Royal College of Psychiatrists
- Royal College of General Practitioners
- British Association of Urological Surgeons
- American Psychiatric Association
- American Primary Care Association
- American Urological Association
- Canadian Psychiatric Association
- Canadian Primary Care Association
- Canadian Urological Association
- Royal Pharmaceutical Society
- All Wales Therapeutics and Toxicology Centre
Sexual health groups
- British Association for Sexual Health
- College of Sexual and Relationship Therapists (COSRT) – including 550 of their members
- Institute of Psychosexual Medicine
- American Association of Sexuality Educators, Counselors and Therapists (AASECT) – including 134 of their members
- Action Canada for Sexual Health and Rights
- The Sex Information and Education Council of Canada (SIECCAN)
- SHaRe – Sexual Health and Relationships
- International Society for Sexual Medicine
- Sexual Health Research Network
- Austrian Society for Sexology
- Institute of Family and Sexuality Studies, Belgium
- Flemish Society of Sexology, Belgium
- Danish Sexology Association
- Australian Society of Sex Educators, Researchers and Therapists (ASSERT NSW)
- Sex Therapy New Zealand
- Centre International de Formation et de Recherche En Sexualité (CIFRES)
Other groups
- Mayo Clinic (US)
- MHRA (UK)
- Mind (UK)
- National Survivors and Users Network (UK)
- Relate (UK)
- E-Drug (Global)
- Mad in Brasil (Brazil)
- Fair Medicine (Holland)
- Health Action International (Holland)
- Lareb (Holland)
Your efforts
There were some impressive efforts from many of you to support the Prize which were mentioned on our blog at the time.
Mary commissioned a wonderful piece of artwork from textile artist, Josie Russell. It contained the Welsh expression “daw eto haul ar fryn” which means “better times will return”. Mary generously covered the price charged by the artist and the postage costs. The piece was auctioned with all proceeds going to the Prize fund.
We knew that not everyone would be in a position to donate, so we also suggested other ways that people could help such as running a fundraising event, or writing to pharmacologists, physiologists, geneticists, sex and relationship therapists, etc.
Some of you contacted various medical groups to make them aware of the issues. One volunteer designed and printed a batch of business cards advertising the campaign, which she distributed within the community on bulletin boards, in hospital waiting areas, and in shop windows. Another volunteer spent several days visiting a large number of pharmacies and doctors surgeries, providing them with information from our website.
The target of $100,000 USD was eventually reached following donations from 193 supporters in 24 countries. We are very grateful to everyone who played their part in the RxISK Prize, both in terms of raising funds and spreading the message.
The research fund
In 2022, the climate seemed more amenable to the possibility of a research fund.
New research had come onto our radar run by Prof. Luisa Guerrini at the University of Milan. Our papers on 300 Cases (a follow-up to our earlier paper) and PSSD patient experiences (full manuscript is available here) had been published, and our data had helped to create the diagnosic criteria.
We had also successfully petitioned drug regulators in Europe and Canada to add warnings about sexual dysfunction that persists after stopping SSRI and SNRI antidepressants. For more background on this, see blog posts about the European Medicines Agency and Health Canada on the links provided.
On June 21, 2022, our PSSD Research Fund was launched with the aim of funding scientific research into PSSD and related conditions.
We were immediately criticised for not transferring the Prize over to the new research fund. However, this was, and still is, far from straightforward. The money for the Prize is held by charities which means there are rules and regulations that need to be followed – money can’t just be moved around. Also, it isn’t held by a single organisation in a single country. This was so that US and UK citizens would be eligible to claim tax relief on their donations which would hopefully make people more likely to donate. We wouldn’t have been able to offer that with a single charity.
In the short term, it was necessary to keep the Prize separate from the research fund, but we continued to assess the situation and made enquiries about the possibility of transferring the money.
Proposal
We believe that the Prize donations would be of greater benefit by being transferred to the research fund, and we are considered taking steps to arrange this.
It doesn’t mean that the money would automatically be given to the existing projects, as every claim for funds is carefully considered and needs to be agreed upon by the charity trustees. It just means that the money would be readily available for research purposes.
We are interested to know whether there is general support for the idea. Your comments are welcome below.
annie says
It doesn’t take long to burn through $100,000 in research circles.
Equally, the money is sitting dormant in a bank account and doing nothing.
All the bets seem to be on providing money to those who are actually doing the research from the research fund. The decisions made to furnish these researchers, comes with some confidence that these researchers could be making some headway, in what has been an area where little to no research has been done.
Research
Updated 1 March 2024.
The PSSD Research Fund is currently supporting three projects.
The first is run by Prof. Luisa Guerrini at the University of Milan. Prof. Guerrini has a background in research on regulatory proteins and has discovered that SSRIs produce changes in ACE2 receptors and p63. Similar results have been seen with isotretinoin and finasteride, both of which have been reported to cause similar conditions to PSSD.
p63 is the gateway to the neuro-epithelium that forms skin and nerves, and ACE2 is known to be linked to sexual dysfunction. This would fit with recent indications that at least some people with enduring sexual dysfunctions have a peripheral neuropathy.
A further discovery was that the cells in her assay system exposed to these drugs stopped dividing. Further work is needed to understand why this happened and whether SSRIs, finasteride, and isotretinoin all behave the same way or whether there are points at which they diverge.
The funding that Prof. Guerrini has been given to date was for a postdoctoral researcher and materials for testing including specialized antibodies to help understand why the cells stopped dividing.
This project is ongoing and we are aiming to write up the initial findings in the coming months. We hope this will generate wider interest and the involvement of others.
The second project is a study based in the UK involving corneal confocal microscopy (CCM). CCM is a non-invasive technique used to investigate peripheral neuropathies by taking images of nerve cells within the eye. The aim of the study is to investigate whether CCM can detect abnormalities in PSSD patients. In addition to CCM, participants also undergo a range of other tests for peripheral neuropathy including Sudoscan to evaluate sweat gland function. Several participants were tested in 2023, with more recruited in 2024 to increase the sample size. We hope to have some initial results around mid-2024.
In the third project, we are tracking the use of transcranial photobiomodulation therapy in two PSSD patients to see if it produces a benefit. There is published literature describing its use in antidepressant-induced sexual dysfunction. However, to our knowledge, this is the first time it has been tried in PSSD patients. The plan is to also assess genital sensation using von Frey filaments before and after treatment. It will probably be towards the end of 2024 before we have any results.
Money disbursed
Von Frey Filaments £394.25 on 28 January 2024
CCM study £1,100 on 19 October 2023
£15 transaction fee on 12 July 2023
£9,642.36 to Dr. Luisa Guerrini on 12 July 2023
Open access fee of £1,289 on 29 June 2023
Transaction fee of £5 on 27 July 2022
£13,925.15 to Dr. Luisa Guerrini on 26 July 2022
Dr. Luisa Guerrini is being financially supported and her ongoing research seems to be a very important part. As she has gone so far, it would seem to be remiss for further monies not be available to her and her team.
The amounts of money from both funds is not an awful lot to play with, so what we have should be used judiciously.
For these reasons, I would transfer $25,000 from the Rxisk Prize Fund to the Research Fund.
As an aside, let us also remember Katinka Blackford Newman, who ran a Marathon for Rxisk, wearing a singlet advertising Rxisk.
Heads together, to try and raise more Funds for this hugely important research and awareness.
Have you written to Elon Musk, who quite often voices dismay about prescription drugs and who just might be hugely sympathetic…
https://twitter.com/elonmusk/status/1767709493293371482
Dr. David Healy says
Thanks for this Annie and good idea to add here the details of money already laid out. One key point is we don’t plan to burn through money. We will have to be very very convinced there is something highly likely to help.
David
A. says
In my opinion, if you think there is a viable treatment, it would be best to use the money for funding a research rather than giving them as a final prize. Unfortunately there is not great interest around the subject (in the Country where I live – Italy – I contacted countless journalists explaining in details about the condition but nobody replied). I am glad there are few doctors here who are studying this and it is very sad that nobody is actully funding the research. I read in the list you provided that there are pharmaceutical companies. Did they fund the research? They should be the first in line. Anyway yes, I think it would be better to give the money to fund the research rather than using it as a prize for who find the solution (given the fact that nobody is funding the research)
Dr. David Healy says
We contacted pharmaceutical companies as you’ve noted because it seemed obvious that they should be interested to help. Morally yes, but legally no – they are still in denial that their treatments have any links to any problems. Not only did we not get any money that I know of (although we have had some large anonymous donations) but we did not even get a reply to the correspondence.
David
A. says
My opinion is still the same. The prize as it was originally formulated won’t help because there is nobody funding the research. So it would be better to use it as a research fund.
Dr. David Healy says
The Prize was not aimed at getting research funded. The idea was there is likely someone out there who has the answer but doesn’t know s/he has the answer. We still believe this is quite possibly the case. The Prize was aimed at alerting people to the fact there was a problem they didn’t know existed that they might have he answer to.
I made a mistake earlier – we has an answer from Sanofi who appeared to agree that PSSD is a real condition.
David
A. says
Props to Sanofi then.
Anyway it is up to you and to the people who gave money to decide how to use it. I still think it would be better to use it as a research fund. I gave some money tothe italian research ofthe university of Milan but I cant afford to give too much. I will send something more in the next month. And it is sad that we, the sufferers, are funding this kinda stuff. People in higher positions should. We patients are always considered delusional and are unheard. I could send you a list of journalists i contacted and your jaw would drop noticing how long that is. Nobody, nobody replied.
Have a nice day
Daniel says
Just so that anyone who reads this can see, i wrote a lot of good reasons to be highly sceptical of the idea of tranfering the prize money into research when you first posted this, you might if you want: read my comments at https://rxisk.org/new-test-to-confirm-a-pssd-diagnosis/ so that you can see the context but i will repost here AT THE END I HAVE WRITTEN A SUMMARY + WITH SOME NEW POINTS
“To be honest i think that we have some reasons we might be skeptical,:first of all , if such a project fails to lead to a cure we may then have lost the hope of generating interest from people willing to claim the price. Secondly how do we know we really are close to a cure? Should not we wait until we have had some success with the drugs that seem to be much of the underlying cause for your enthusiasm , so that we have proof that we are on the right track? Thirdly:What if it is not merely enthusiasm but overenthusiasm : you have made statements roughly like (i could not find the exact qoute) “we may be close to a cure” and “looking into these biological systems could revolutionize medicine or lead to the next nobel prize ”
Your blog posts dont quite explain explicitly how knowledge on the role of p 63 regulatory proteins could lead to a cure!” AND later i posted “Is the idea behind trying to understand which biological systems are involved that you would find out receptors that could be affected by drugs? It sounds then superficially to me, that if testing of ones von frey filaments could be done as affordably as you have stated and at home, then it could be done repeatedly at home during various experimental treatments, to see if the measured values changes. 100 000 dollars does not grow on trees. The relevance of studying these various biological systems in animal models should be contingent on what we find from experimental treatments i figure, one should not throw such expense at an early stage of knowledge of the condition i think. Desperate people have given their money under the promise that it will attempt to make a cure a reality, it will not be fair to us to use it for work that is quite removed from bringing about a cure .In order to motivate research on these systems from a pssd-treatment point of view one has to resort to indirect and theoretical arguments about what it will say about which treatments might have effect, it will be far a more direct way to try medication regimens directly and measure the results i figure. Are there treatments that affect the piezo system that people could try? At any rate i belive that chances are that if you want to have the funds to study PIEZO-2 or whatever, then people might contribute to that separately if you make a new push to help fill up the research fund!
By the way, do you have any thoghts on systems involved in the brain fog or anhedonia often associated with pssd?”
NEW TEXT MARSCH 13 2024 If the prize fund is a failiure so may it be,but when funds are repurposed for something else:that better give progress towards an effective treatment for the sufferers.My main points really is that people have given their money in desparation for a cure, there is no stated determined way for each research project to lead to a cure,there is no plan ,you make it noticable that you are highly interested personally in it for academic reasons,that will probably affect how the money is spent,it seems,having the discretion over so much money may be a problem bacuase you will not spend it like someone with skin in the game would, it will go into projects about “understanding” which is academic in nature and not the same as the recovery needs for patients with pssd,we need to understand the relation of pssd/pgad/pfs to treatments not to biomarkers:when we already have some biomarkers to try to influence we do not need to go the pure science yet expensive route of in depth studying how it may work the utility of such science seems to be that it indicate (but never prove) which treatments should be tried ,no one will create new drugs to treat pssd or the other related conditions so experimenting with existing treatments seem to be the only way in which a cure can possibly come to be, pure science can possibly be helpful to sufferers is if you can state what it is supposed to lead to and how it will lead to improved ability to treat patients in ways that experimenting with treatments cannot do without first having sufficient understanding ,(for instance understanding what to target with drugs/etc..) Ironically Luisa Guerrini,s research seems to be the most expensive type of ends the money could be used for .. I am not in priciple against the idea if the money is used in the best way, but i simultaneously have the feeling that you cannot even give a plan as to how her research is going to lead to a cure..It sounds to me like we could do very many trials for the same cost that we have to pay for the pure science. Im not necessarily againts Luisa,s research but there seems to be more important things first to achieve as i have stated the money is taken from what perhaps is the only hope we have, If the prize fund is a failiure so may it be,but when funds are repurposed for something else:that better give progress towards an effective treatment for the sufferers.
Dr. David Healy says
Daniel
For anyone reading this to assess your comments they would need to know whether you have any background in research – in how it actually in practice happens. Can you spell out your background.
Second, I think you miss a lot of points that the other comments on this post bring out. Almost no-one is doing any research in this area. There is the Melcangi research. My worry about this and a lot of the finasteride research is they are following what risks being a dead end in this sense. When PSSD first came on the radar and people set up forums to try and find a cure, they tried all the obvious treatments that were indicated on the basis of these drugs work on the serotonin system so lets find drugs that have the opposite actions on serotonin or dopamine systems and see if they put things right – they didn’t and don’t The finasteride research seems stuck in the same groove – what is the headline action finasteride has – lets find treatments that reverse that. This is all logical and sensible perhaps as a starting point but hasnt worked.
Every drugs does hundreds of things and the thing that SSRIs or finasteride does that leads to PSSD and PFS may have nothing to do with serotonin or sex hormones.
Rather than try to guess what that might be the Prize was a way to reach out to people who might be working on other things but it hasn’t worked. I am not aware of anyone with PSSD who has scourced research labs and tried to interest people working on other things in the possibility that they might have the answer to this problem that is killing people and look there is $100K to be won if you do. There are 10,000 people on the PSSD Reddit forum – if they got together and dangled the Prize money in front of the academic/research community it would at least help in raising awareness of the condition. I have mentioned this to lots of people who have been in touch but have not been aware of anyone doing it,
It is going to take us months to get things organized as this end to enable a transition to happen. In the meantime why dont you and others use the availability of the Prize to do just this, If you are successful the Prize will be there for the giving. If you don’t get interest or results at least more people will be aware of the problem.
David
Daniel says
First to answer your question:I do not have a background in research, i only read it.
. OK. I now understand the point that you try to make,about needing to commit to any of the very few efforts that are being done towards progress.Then you state that experimenting with treatments have not worked so far. . But at the same time i note you clearly have not given up on experimenting with treatments, for instance like funding phototherapy or trying low dose meds (was it cholinergics?) to treat pssd. You also have made earlier statements that made it sound like the goal was to find possible cures/treatments among already existing medications.Additionally i recall that i made a comment on rxisks blog many months ago about PEMF having potential to promote nerve healing in mice which you dismissed outright as not fruitful until i gave a reserch reference as support, you were clearly not aware of this kind of treatment. All this seem to show that trying treatments really is not at all an exhausted approach. I hope it is possible to do both that AND support Luisa,s research. By the way, speaking of PEMF, i recall now that i,(at the time i originally made the post about PEMF) searched the contents of pssd forum, pssd reddit, rxisk and also google,, SHOCKINGLY I COULD NOT FIND MENTIONS OF PSSD AND PEMF TOGETHER, WHICH IMPLIES THAT IT HAS NOT BEEN TRIED AGAINST PSSD DESPITE THE FACT THAT IT CAN PROMOTE NERVE HEALING IN MICE(you have stated earlier that pssd may be caused by c fiber neuropathy). For the record i recall that not every study found the same result about PEMF in mice. Perhaps it is worth to try a trial and measure if anything changes?
Louis says
Yes I think this is a good idea. The article mentions Professor Luisa Guerrini from the university of Milan, but how about Dr Roberto Cosmio Melcangi from the same university? All of the PSSD network research donations are going to him.
Dr. David Healy says
See my response to Daniel. I think the finasteride research has been following a certain line that hasn’t produced results to date and on this basis is unlikely to produce the needed results. I hope I’m wrong but even if I’m not wrong, it is useful to have more than one way of thinking about the issues. Pursuing just one line of research is a very bad idea. Having people do things is a good idea and do very different things is even better and the final answer will likely come from someone doing things but noticing something else while they do so that is quite different to what they originally thoughts
D
mary H. says
Might it be an idea to get the report from Luisa Guerrini and publish her message – in plain English please! – so that we can all see where the money that has already been used by her, from the Research Fund, has been used and any conclusions that can be drawn from that work?
We are not all scientists but we all, surely, deserve to be given a chance to understand where, and with what results, our money has been used.
Once we have a clear picture of the situation so far, we will be better placed to voice our opinions on the question that you pose regarding the transfer of Prize Fund money.
Dr. David Healy says
M
A quick update on a point you raise. Luisa has been plagued by bad luck. She had a research assistant do a lot of sloppy work and then leave and she has had to redo it all using her own money. This has clearly held things up but I remain confident about the work. It may not solve PSSD – it might link more to the fertility issues SSRIs are linked to but it will definitely improve our understanding of these drugs which in the longer run has to be helpful
David
mary H. says
That’s great to read. Pity that the assistant hindered rather than assisted the situation but good that it still sounds positive. Makes matters much clearer now. Thank you.
susanne says
I agree with the reservations some are expressing about more detail needed. It is problematic to decide to change the use of the funds when in the beginning there was such a strong commitment that it would not be used for any other purpose than the Prize . .Is Luisa’s research being monitored. How much independence does she have . Could her use of the lab for this research be stopped at any time I guess more transparency as outlined by Mary would be useful… If anybody did find the key one day perhaps they would share it without having the Prize as an incentive Even if that is a pretty nice carrot right now it’s not being taken up by researchers . It’s my view that the Prize if enough support from supporters as well as the Trustees would be best transferred with thanks to all those who donated to the Prize in the beginning. How would it be finally decided though?
Dr. David Healy says
Susanne the promise was not to spend the money on anything that PSSD research – no spend on overheads for us. That remains the case. The idea behind the Prize was that most research is money down the drain – the Prize offered people with PSSD who have an important part to play to use it to get a foot in the door and badger people but very few people with PSSD have used it in this way. The original idea was that it would not be sitting there idly – the reality is that it has just been left sitting there.
D
Nick A. says
Firstly i just wanted to say thank you for all you’ve done. I don’t think we could have gotten this far without you, with everything that’s been done up to this point.
I personally believe it to be more beneficial for the PSSD community for this money to be used for research instead. Enough funding for preliminary data could give headway into more funding. Also better than it sitting around collecting dust for years
Sc says
100% it needs to be transferred to the research fund. Us sufferers are barely hanging on as is and at this point anything towards research helps.
Mr Justin Oxley says
I’m not sure how researchers could derive a cure once they have characterised the problem. Isn’t people just trying things out more likely to lead to a best we have solution ?
Dr. David Healy says
Justin
There is ton’s about the point you make that is just right but not always right. A great example is the Jon and Justin’s Journey’s post from May 2023, where there is something that has worked for Jon which is totally different to what lots of other people find and what lots of other people find doesn’t seem to be working for you.
Things like hyperbolic tapering sound like science – its not – its a myth that makes what works for some people and not others look good. Its the same for all drugs – they might work for me but not you – and all therapies psychoanalysis to CBT, DBT etc which work for someone and they hold it up as the answer for everyone when its not.
In some other problems and PSSD fits into this, it looks like finding the mechanism is important – it may not lead to a cure. But people like Rosie Tilli have been detained in hospital for her crazy ideas about what has happened her which would not happen if we can establish the reality of the problem – and part of doing this is being able to explain how it happens.
David
There is also another angle to the research – finding a test to prove what people say is right. This would save lives.
La castrata says
Of all the organisations you listed who were contacted about PSSD, how many responded? Did anyone offer to help in any way?
Dr. David Healy says
No – the response has been to hold garlic and crucifixes up in front of us for mentioning a sacred drug could possibly cause any harm. I’m sure in times gone by it would have been execution. Now if you are a patient describing the problem as Rosie found out you are likely to be detained as Mad. If you are a Fellow of the Royal College with more distinguished university press publications perhaps than anyone else in the College – there is silence.
We are living in bizarre times –
David
Roy says
Another common response if you are a patient complaining about PSSD, is for them to diagnose you with a mental health condition, that explains away all of your PSSD symptoms.
Some examples are conversion disorder, delusion disorder, somatic symptoms disorder, and personality disorder.
All of these diagnoses have actually been used by psychiatrists to explain away the symptoms of PSSD, in people in the PSSD community.
It is an insidious form of gaslighting and abuse of power, and when the person understandably becomes agitated and angry at not being believed, this often just seems to add credibility to the phony diagnosis.
Often the person’s own family believe and side with the psychiatrist, and believe that their family members PSSD symptoms, are symptoms of a mental health condition; and haven’t been caused by the medication, further isolating the sufferer.
There have been suicides because of this.
Mr Justin Oxley says
To make an analogy which I am familiar with it is easy to design a filter which can be used to generate vowel and dipthong sounds to create synthetic speech.
It is not possible as far as I am aware to derive the parameters of a filter by analysing speech sounds using fourier analysis and formant extraction. In order to do this you need to create a look up table of parameters which are derived from actual vocal tract shapes obtained using MRI. Just because you know the characteristics of a speech sound it doesn’t mean that you can create the vocal tract shape which made those sounds. People did try to find a mathematical method to do this but it isn’t possible.
If you have the characteristics of pssd nailed down how can you use that information to derive/look up a curative compound ?
Dr. David Healy says
Justin
We are closer to the same page than you think. The analogy I use is it you look at a broken bone no one would think a metal plate was the right answer. Across medicine the drugs that work are often ones that do more damage and help by compensating for the original damage.
But it we can show how to produce PSSD rather than how to cure it – we may for instance be able to make it possible to take legal actions – if a very small group of people can show this why was a multi-billion dollar industry not able to show it. Or if we locate in your Piezo2 proteins, this gives us something to look for on epigenetic profiles that support a legal action or may help with a gene test to tell you beforehand these are not the drugs for you.
David
Daniel says
This was not what you stated during the rxisk prize campaign. You explicitly stated “we could be close to a cure!” But now when you have got the money you want to give up and repurpose it for something completely different than what you sold on to people like me who feel despair and are desperate for a cure or effective treatment.I think you owe us who have donated to this prize honesty and being straight to us about what the prospects of a overall helpful treatment is. (As opposed to for instance what you described:”Across medicine the drugs that work are often ones that do more damage and help by compensating for the original”).If the purpose apperently only is about prevention and legal action why dont you make a clear statement about that and own it. Have you given false hope to us? PLEASE ANSWER MY QUESTIONS.
Dr. David Healy says
Daniel – I can find no donation from any Daniel or anyone with your email address.
We have emailed all donors to draw their attention to a possible switch. The responses so far have been close to unanimously positive. Do you think you should be able to block a switch if that appears to be what donors want
As regards your questions I have said and intend none of the things you claim I’m saying and intending. You are focusing in on details and missing the bigger picture. This is a personality difference – you seem to be are a detail person rather than a bigger picture person but this doesn’t make you right.
My role in a lot of the posts and comments is to act as a lens for issues people raise – lots of people raise questions about legal actions and desperately want to take one and I can see why but having been involved in far more legal actions than almost anyone else I know this is close to impossible. Finding a basis for PSSD might change that scenario in addition to preventing people getting locked up in mental hospitals. These things might not count for you but they count for lots of people.
You show no signs of appreciating what we (and none of what happens is just me) hoped the Prize might do. Its likely it will take months to make the transition. I suggest you and any like minded folk spend the next few months working hard to draw the attention of researchers to the Prize – if someone does have the answer and can claim the Prize no-one will be happier than me. It will be a cure for you and others and proof for me and us that the idea of a Prize was a good one. But we expected you and the 10,000 other folk on Reddit would own the Prize and be able to make it work for all of you – but you and they haven’t done so.
You’re not talking about Hope, You’re describing fantasy or optimism or wishful thinking. Hope builds on achievements. We have a bunch of achievements that make me pretty hopeful. If you achieve something it might make you more hopeful too.
D
Daniel says
Just for the record i have donated, but using a different account. You are right that i am a detail person i am on the autism spectrum. Well i still think the research fund should finance treatment trials as a central goal.
Dr. David Healy says
We have been emailing people to get all points of view – and also laying out part of the rationale for a possible change – which is nobody is using the Prize as we hoped. If you can come up with thoughts on how to make this happen it would help. You also appear to have switched focus from the Prize to the Fund.
To run a treatment trial you need to have good evidence that something might work. No-one in their right mind would participate on the basis of a hunch about something working and being safe. And even a small properly done treatment trial takes $30 Million. Let me what that does to your views.
D
Mr Justin Oxley says
Perhaps I have some undiagnosed genetic syndrome ? There are alot of syndromes. I did have quite severe convulsions before I was even a year old. Those can occur in dravet syndrome, I did have quite a difficult time in my early school years.
I will have a think about Jon’s method of reducing his dose. I’m just worried as if I make a large drop and things go haywire with me, it’s not possible to rewind my life and taper slower.
Dr. David Healy says
See my response to your last note and your genes. I’m not advocating you take Jon’s approach. This has worked for him but might not work for – that’s my point. I think all your work researching herbs etc has been marvellous and impressive. You deserve success but this hasn’t happened and I wonder if the hyperbolic mumbo-jumbo hasn’t misled you. Peter Groots tapering strips work without adding any of that language into the mix.
Unlike PSSD, withdrawal is likely multiple different conditions with Jon having one kind and you another. But pinpointing the basis for some version of this problem might enable us to say if his approach might help you before you take what I agree are pretty serious risks trying.
David
Mr Justin Oxley says
So it’s a mystery then ? Perhaps there are genetic factors which influence how each individual responds to tapering and I have drawn a short straw in that respect ?
I will have a closer look at how Jon reduced his dose. Each of the now four flares ups I have experienced during tapering have been quite unique. I like to be left alone with my peace and quiet, during flare ups I have trouble coordinating my movements to prepare my meal although I try. When it gets bad I just eat something like a pasty that I don’t have to cook and stuff like that. I take the path of least resistance in most endeavours.
Mr Justin Oxley says
My thinking recently has been to look for supplements that have evidence that they can ameliorate neuropathic pain. I think the thalamocortical dysrhythmia is caused largely by the large amount of neuropathic pain signals. So logically therefore I thought the symptoms associated with the thalamocortical dysrhythmia such as tinnitus etc should be lessened if I could attenuate the neuropathic pain signals. There appears to be alot of research into flavonoids to treat neuropathic pain. Alit of the detail in the papers is rather impenetrable but I can get the just of what they are doing, these papers represent alot of work with very expensive equipment so it would be a shame not to look into them.
I read a paper about the oscillations of thalamocortical circuits which was quite complicated, these circuits aren’t the sort you find on a pcb which you can fix using a soldering iron and some test equipment.
Dr. David Healy says
Justin
Thalamo-cortical dysrhythmic ICD is like lowered serotonin a bit of biobabble – garbage. Its meaningless. The phrase was coined 20 years ago and there is still no evidence to support it. SSRIs attenuate neuropathic pain – do you think they are worth taking?
David
Mr Justin Oxley says
I don’t think I’d go near another SSRI ever again for any reason based on my experiences.
Mr Justin Oxley says
Isn’t the thalamus analogous to a telephone exchange, so the Erlang B traffic equation might go some way to explaining what happens when it is bombarded with too many spurious neuropathic pain signals causing other signals to be effectively dropped ? Hence the lack of focus, sensory symptoms etc. I do my best to take what I understand and use that to explain to myself what I don’t understand.
Andy Alt says
I made only a small donation, but I am not opposed to transferring the money to the research fund. Thank you for the update and for asking.
susanne says
Just a thought . There will be others keeping at least half an eye on the possibility of getting into this area of research. They will be using the massive amount of work David has already done. Already he is one of those who is most quoted in references by many publications and so on It would be a shame to think untrustworthy agencies might get involved for negative reasons . Seems they aren’t interested enough presently. if the fund is used to show some way forward it might just might snowball into wider collaborations with other researchers who are nibbling but not enough to risk jumping in themselves yet. Once the decision is made, if it is to transfer the Prize, I think the sooner the better as the issue is attracting more attention if not enough action yet.
Rob says
It’s up to you and the ones who fund the prize. I didn’t. I sent all I could afford to the University of Milan and contacted countless of journalists and tv. No replies so I lost hope after nearly 5 years of struggle.
Katie B-T says
I’m good either way. With the Prize staying as it is or transferring it to the Research Fund. Thank you Rxisk for all that you do.
Jeremy Bond says
Hi David and everyone concerned (including those posting here) – I’d like to add my thanks to those of others for the work done – I’d also completely trust your decisions in the matter here and going forward.
Great and important work is being done – It raises the spirits to know about it.
good wishes, Jeremy
Johanna says
I’m 100% for donating the Prize money to the Research Fund. Here’s why:
For us, $100K is an ambitious sum. For the drug companies, even smaller ones, $100K is chump change—not a meaningful incentive. As for the scientists inside those companies, their employment contracts may forbid them to do independent work on the side, and any discovery they make belongs to their employer. $100K may not be chump change to them, but it’s not enough to tempt them to ditch their jobs. Ditto for most university scientists, who are now much more like corporate employees than in the past.
AIDS activists in the 1990’s found ways to collaborate with lab scientists, including Pharma employees. But they at least could offer the chance to work on a disease out in the natural world for which no good treatments existed. What we are offering is the chance to work on a drug-induced illness. And as David says, the response has shown that most are not even willing to admit the existence of such a thing.
So we must turn to the Upstarts: maybe a researcher, maybe just a sharp layperson with an idea. We have plenty of people smart enough to generate a good hypothesis. But how do they manage to do the work necessary to put it to the test? That’s where the $100K could really make a difference.
Harriet Vogt says
This is obviously a decision that needs to be made between donors and your team.
A couple of observations from an outsider who supports you all:
– Although a potential motivator, launched in 2017, it may be that the Rxisk Prize was a bit premature – in hindsight. Team PSSD has driven awareness exponentially – but only significantly in the last year or so. You didn’t have the base of PSSD awareness that you do now.
– Having said that, as you observe, treatment developments are often serendipitous. Could it be that focusing funds, research efforts and, importantly, publicity, on the iatrogenic mechanism might be more likely to trigger connections in scientific minds?
– What you say about developing a PSSD test, if I understand you linked to mechanism, is surely pivotal. The moral injury compounding PSSD patients’ terrible suffering – laughed at, humiliated, told ‘it’s all in your head’, being locked up like Rosie – is unconscionable.
Brilliant work by you, Rxisk – and Team PSSD, whom I see in action every day on social media, in national media, connecting with political leaders etc. It’s still shocking that patients and rare clinicians who pay attention to them have to campaign for years for grievous harms like PSSD to be recognised officially. Has the MHRA stopped dragging its heels yet? Assume the FDA is still dragging?
Was reading a classic (2004) paper on organisational typologies by Ron Westrum (you’ll know it). Regulators – a blend of pathological and bureaucratic? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1765804/pdf/v013p0ii22.pdf
How orgs process information
Pathological
Power oriented, low cooperation, messengers shot, responsibilities shirked, novelty crushed
Bureaucratic
Rule oriented, modest cooperation, messengers neglected, narrow responsibilities, novelty- problems
Generative
Performance oriented, high cooperation, messenger trained, risks shared, novelty implemented.
Johanna says
I have been thinking about one project RxISK might undertake to support the research: A “registry” of PSSD sufferers.
Folks could join this registry by filling out a questionnaire detailing the symptoms they have, the severity of each, the drug(s) they took, duration of use, the diagnosis for which they took the drug, any other health problems they may have had prior to starting the drug, as well as their age, sex, nationality, marital/partner status and other details.
They could also be asked if they would consider volunteering for “trials” of possible treatments, and if so to give us contact information.
The more people who joined the registry, the more we might learn, including possible “clusters” or specific sub-types of PSSD based on specific drugs or types of patients. And if promising treatments emerge, having a list of people willing to consider a trial would obviously be helpful. It would also be safer and more rigorous than simply encouraging people to try things on their own and tell us whether they worked.
Does this make sense?
Dr. David Healy says
Jo
It makes sense but it would need the resources of a pharma company to make happen. While PSSD is among our lead projects for all sorts of reasons, it is only one. There are very few of us behind the scenes each juggling several balls and a project like this would several people working on it alone.
A contributor from the PSSD network recently told some of us about a lecture by Wendy Burn – a president of the Royal College two presidents back – in which she seemed to recognize the existence of PSSD and that psychiatrists around the country were seeing cases. See this link to twitter https://x.com/wendyburn/status/1769407338346074577?s=20
It would clearly be good for patients if the College got involved in this but equally good for the College as I tried to tell Lade Smith – the current president – see the recent post Sex, Death and the Royal College. The involvement of a body like the Royal College, moreover, would be something that FDA and other regulators could not ignore. They can ignore RxISK.
We need a few things – one of which is a register – but we also need confirmation that PSSD is real thing to stop people like Rosie being detained in hospital for crazy ideas
David
mary H. says
I think Jo’s idea is good and has left me wondering how much of such information is already being held by PSSD Network? To lighten any workload, it has to be a good idea to share possibilities. It seems that PSSD Network have moved so far forward, in getting people to be prepared to make their suffering public, that they may well have something in place that keeps such information safe and away from prying eyes. Might it be an idea to actually find out from them how they keep their records? Working together makes sense in my eyes. Together stronger – in all cases except for Wales’ 2024 6 Nations Rugby!
susanne says
Have the Trustees decided when the cut off for feedback on the proposal is going to be.?
Dr. David Healy says
No
mary H. says
Is there any way of ensuring that all donors have seen this post?
What would be Rxisk’s responsibility if someone came along with a “cure” at some future point?
Would naming a date by which any interested party should contact Rxisk if they are working on a “cure” mean that the fund could then be safely transferred, if that is the final decision?
Dr. David Healy says
Mary
We are not going to be able to be as precise as some people might like. If the Prize transfers into the Fund. I can see it remaining more or less intact there for a year or more because there isn’t anything we would agree to Fund. It is more a case of giving us the flexibility to fund something if a project comes along that deserves funding.
If while the money is sitting in the Fund, someone finds a cure and wants to claim the Prize – it would likely be possible to grant it even though its not at that point in a pot called Prize.
The issue is what is the best use of the donated money to achieve the end we all want. Some people say just put it into research – its idle if you don’t. Just putting it into research is mostly a waste of money. The research project would have to look pretty solid to us before we’d support it.
D
Dr. David Healy says
I’ve had an interesting off-the-record comment saying that it might be difficult to be as flexible as I/we were in the last comment in response to Mary. That the book-keeping side of things might now work.
I think we need to bear in mind we are dealing with hypotheticals here. The purpose of what we are doing is to get a cure for people with PSSD. This means cure them. Should a cure be found by us for instance I don’t envisage claiming the Prize. Depending on what the cure is and whether it is costly I envisage putting money toward ensuring people have access to the cure.
The Cure may point a way to further research and enthuse lots of people to do that research. Lets say it points to PIEZO2 proteins as the problem – it might raise a question about the genes for this protein among those who end up with PSSD. If this was nailed down, a test that could tell people who should avoid SSRIs would be possible.
Its impossible to answer the question until we get more details from unfolding events. One hopes that anyone who finds a cure is more motivated to save lives and reverse the appalling suffering this condition entails than to line their pocket with money.
If they aren’t motivated that way and want to take a legal action against us for not handing over a full 100K – I think my personal reaction would be bring it on. If we’re being sued for trying to save lives this is the kind of story any decent news outlet should want to run with and in the process this would establish PSSD in a lot more people’s minds than is now the case.
Also the person who finds a cure is much more likely to get a Nobel Prize if s/he is seen to save lives over lining his/her pocket.
David
mary H. says
I understand everything that you say here, David. The problem that I have comes more from looking for further donations into the Fund. If I were to set up some other fundraiser, similar to the previous auctioned piece of work, then I would need to be able to tell people exactly where we now stand.
I know for a fact that if I start talking about the “Fund”, I need to know whether I’m talking about the combined total or two separate amounts. Ordinary people will not worry about the availability of the Prize money as such – they will appreciate that a Research Fund needs as much in its pot as possible, should there be a breakthrough in the future.
To my mind, we need a date whereby the Prize transfers to Research and that date needs to be made public. The date may be a whole year or so ahead of the announcement date – but it’s then out there for anyone to see or for us to direct people towards it. As far as I can see, whether it’s sitting there as two separate Funds or as one combined Fund makes very little difference. The difference will be in the fact that we have clearly stated the intention to combine at a future date. People, whether it’s those working towards a cure or the ones donating money, need clarity. We cannot afford for people to lose interest due to the simple fact that we haven’t clearly set out our intentions.
Dr. David Healy says
Mary
We don’t have a data and don’t know when we might have one. We have to work this out with the US Foundation who have a stake in what we do.
The reason you feel you are dangling is because you are. One option was to ell people nothing until it was fait accompli – but that doesn’t seem right. Another option was to do nothing which doesn’t look great at the moment. The third option means everyone has to get comfortable with dangling for what may be quite a while
D
susanne says
David
What is the US Foundation? You say there is need to wait on unfolding events but what are they? I don’t understand how the final decision will be made. If it was even possible for the Trustees to simply transfer the funds as a fait accomplit where do the people who have been asked to give feedback stand? It would look pretty shabby to do that so thank goodness it is not a real option. If there was what is probably an unlikely legal action for not handing funds over – who would the legal action be against now ? It’s become rather muddled . I asked whether there was a date in mind but your response was just ‘no’ I think it needed more than that as Mary has been pushing for. I think there needs to be more clarity as to whether the Trustees have decided whether they would prefer to go ahead with a transfer from the Prize to a research fund. It does seem this has been decided but hasn’t been spelt out.
Dr. David Healy says
I’m sure you don’t mean it this way but it almost looks like you are telling me I’m lying. I’m telling you as it is. What I think you are misreading is different personality types. There are those who risk manage and Mary on this issue at least is falling into that – we have just been through an ordeal with the Charity Commission – nothing to do with the Prize – everything to do with the Charity commission trying to reorganize themselves and creating an unholy mess.
So she knows how badly wrong things can go. On top of that in a situation like this we can have people like Daniel who earlier was arguing against a move and nothing that was said seemed to satisfy him We asked if he was a donor and he said he was – turns out he doesn’t seem to have been and when challenged on this vanished from the scene.
I am more a risk-taker. In a messy situation like this you can either act or not. I will tend to act. But it is not clear we will be able to. We were able to engineer a situation where US donors could claim tax relief on donations to a US Foundation. Over half a year ago we approached the US Foundation outlining our thoughts about a possible move like this – but then ran into our Charity C problems and all of that has been put on hold. The US Foundation aren’t used to dealing with this kind of thing and are likely to take time to work out if its possible or not.
It is simply not possible for me to say when we might be able to do something or even if we will be able to but in order to be able if we are it seemed a good idea to put the idea out there and gauge responses. At present the responses are markedly in favor of going ahead with the switch.
David
susanne says
I’m sure you don’t mean it this way but it almost looks like you are telling me I’m lying.
As I know you know me a lot better than that I wonder why you even hinted that that is what I am saying There is no hinting at anything, you have read too much into my asking reasonable questions I find it offensive as people who know me personally and the work I do would agree. I am not a supporter of Daniel so why bring him in.
I am clearly saying the situation is muddled and it is. I am not the personality type you suggest ie someone who is adverse to taking a risk – life without risks is pretty impossible but it is reasonable to ask for some clarity – as you have actually given here
I have said clearly on comments you have read – I support a move but am not fixed on any position.
Dr. David Healy says
I am trying to convey to everyone just how tricky all this is. With something like this and something like PSSD there are lots of people who take out their anger with other parts of the system that have caused their problem on us.
I’m not saying you are doing this – I’m trying to outline for others who even with the best wishes in the world we can end up with a mess that sometimes can only be resolved by taking action.
D
susanne says
Sometimes it’s right to apologise. Your comment was aimed at me and was shocking. I have no conflicting interests I am not involved in any way with the PSSD network or have any other interests which have anything to do with Rxisk If other people are angry with Rxisk you should not assume others are associated with it
Ben says
I am OK with either keeping the prize as it is or transferring it to the research fund and am happy for the RxISK directors and those who have donated larger amounts than I have to take that decision. Here is my input if it helps at all:
The issue with the prize so far seems to be who would be sufficiently attracted by it to do some related work or research and how do we reach those people. As others have mentioned, awareness is increasing all the time, so perhaps the chances of us reaching those people are increasing. The prize has been less in the consciousness for a while due to focusing on other areas. Perhaps this is a moment to specifically draw attention to it on social media, targeting the right groups and areas.
Alternatively, if we cannot reach people who are interested or who can help using the prize, transferring to the research fund gives the chance to try and increase knowledge and understanding of theories of PSSD, which gives hope and may stimulate further progress. I know that some people have hoped for this for a while.
As a sufferer, some kind of treatment is what I am hoping for most. If that is not realistically on the horizon, then proof of the existence of PSSD / bio marker / test is the next best thing because it might lead to the former.
Thank you for all the continued efforts!
Wick says
Tbh I never thought 100k was enough money to be motivating as a bounty for finding a cure. I’d say donate it to research if you can.