There have been some major developments on the RxISK Prize front.
First we are hovering around the $66,666 point – depending on how exchange rates go we may be wandering back and forth over this line as I write.
More important however is that San Marino has raced out in front as the donor leading country. This is down to one important woman and a small population. Her donation comes to roughly $1 for every 100 inhabitants.
Bill Gates lives in Washington State which has 7.6 million inhabitants – so Washington State could catch up if Bill donated some small change – $76,000. They might even take the lead as others from the state have already donated but not yet Bill.
Bill mustn’t have gotten the message. This could be as important as a vaccine. In this case we are talking about establishing how an adverse effect becomes enduring but, once we find that out, we may be able to make good effects enduring without having to take treatment endlessly. Come on Bill – $3.29 M would do it for the Entire United States.
Let’s hear your proposals for donations from wealthy individuals who could catch San Marino by donating their small change.
Thanks to the efforts of an Italian group who have been the most active national group there is now another reason to donate. The Mario Negri Institute in Milan, one of the most prestigious and independent research units in the world, have agreed to look more closely at PSSD with a view to setting up research on PSSD once things get back to normal. Mario Negri has a track record of making things happen and changing medicine in the process – see Good Pharma.
Interestingly some of the most active research on Post-Finasteride Syndrome (PFS) is also happening in Milan in Roberto Melcangi’s laboratory.
There have also been some interesting boundary developments. One was a study by Jalesh Panicker and colleagues at the Dept of Urology in UCL who appear to have come to a similar conclusion to one of the RxISK hypotheses – that this problem involves sensory receptors rather than damage to nerves or the nervous system. See Here.
Many, perhaps most people with PSSD, “feel” their brans are affected. The good news is that their brains likely aren’t affected but brains don’t work right when the input from the periphery has gone wrong and will work right again when the input is remedied.
What happens in PSSD is almost certainly central to what also happens in the kind of dependence and withdrawal that antidepressants and antipsychotics cause, and likely benzodiazepines as well. So, finding an answer to PSSD and PGAD will likely deliver us answers to withdrawal problems as well. The good news is that the brains of people with withdrawal problems are likely also okay – although they just don’t feel okay.
The opportunity to cure withdrawal needs to be part of the message to people out there who might want to do a San Marino on it.
Catching San Marino is not impossible. The US State of Georgia is currently fourth, after Wales and England, at roughly $1 per 2000 inhabitants – again mostly thanks to the generosity of one woman.
The race is far from over. San Marino could easily be caught by Iceland, the Isle of Man, fabulously wealthy Luxembourg, Andorra or maybe one of the US States like Wyoming, which only needs $6000 to catch up.
Prince Edward Island in Canada would need $1500. South Australia, which already leads in Australia, would need $16,000.
The Seychelles could do it for Africa on only $900 and the Maldives for Asia with about $3800
Even Mauritius could get there – everyone knows someone from Mauritius. They’re all over the place but still there are relatively few of them back at base, so a few ex-pats could do a lot.
San Marino is the fifth smallest national population in the world. A number of the South Sea Islands have even less people than San Marino and it would be great to see them give San Marino a run for its money.
Based on population, however, the place that could and really should lead the field is also within Italy, and historically has had a commitment to making babies. Come on Jose!
Word is spreading about PSSD and serious researchers are now looking into the issues – although the answer may yet come from someone with no research background who finds that something unexpected they take makes a difference – probably not bleach.
We need to blast past $100 K to ensure whoever finds an answer makes it publicly available to everyone immediately. For the record, we have more than one offer of making the sum up to $100 K if a real breakthrough appears – I’d be skeptical of one offer but we have more than one.
Fantastic news – and at a time when ‘good news’ is SO good to get!
I sincerely hope that this post reaches the eyes and ears of those who can make such a difference to this worthy cause. Then, and only then, we can all feel part of such an achievement – especially as it seems that there are a few lights shining at the end of the tunnel. If it turns out that an end to withdrawal suffering, as well as a cure for PSSD etc., is the result, what a relief it would be to so many who have suffered without even having their suffering acknowledged for what it is.
In the 7th. week of lockdown my heart seems much lighter having read this post. Good on you Rxisk group for persevering and good on you San Marino ( she says grudgingly!) for overtaking Wales in such style with one fell swoop!
The podium of San Marino should be supplanted as soon as possible and in one fell swoop. Who can raise their flag high?
Before Bill probably runs to supplant San Marino, let’s try to speed up the achievement of the Prize if we want things to move.
We don’t know how things will go, but the Prize will be a useful tool for us and it will be nice to be able to say we did our part.
Great news the interest of Mario Negri, hope a promising opportunity! Thanks to those involve in this.
Dear Rxisk team,
What do you think of contacting Shaf Rasul, a Scottish multi-millionaire, ex dragon on BBC Dragons Den, who seems to be a very generous person – he exposes scams, such as fake property gurus and dedicates his YouTube channel to helping young entrepreneurs.
We depend on people like you who have hunches like this to make overtures to people like Shaf Rasul for us. If he shows any interest we will be happy to field any questions he had and provide him with all the material we can to make his mind up.
Why don’t ask the offers you mentioned at the end of the post to speed up the process and donate in order to officially go on the media? We are just ordinare guys with ordinary salaries. We are doing our best.
I wrote him. You could do that too. The more the better
I found Shaf Rsuf’s email address. See below. I do not know anything about him. I have sent a few emails to Bill Burr and Joe Rogan asking to have Dr Healy on their podcast. Maybe you can reach out to Shaf and get his attention? thanks
I really would like to donate but I live in a poor country. I do not understand why people from wealthy west European countries, UK or USA hasn’t donated more yet..I hope they will soon.
Dr Healy, I experienced severe debilitating Alzheimers like symptoms, brain fog, complete loss of thinking ability, severe head pressures especially on my frontal lobe, constant nausea, severe issues with processing thoughts or understanding simple things, chronic fatigue syndrome and loss of emotions, all after only a 3 weeks SSRI exposure!, along with PSSD and like 30 other inhuman physical symptoms (extreme hairloss, weakness etc). My QEEG brain scan from 2017 shows it looks like a diffuse traumatic brain injury. Honestly, it felt exactly like that, I’m still not recovered 5 years later from the effect of that toxic drug, I still have full PSSD, fatigue, not returned emotional range, no motivation or lust for living. I found out TBI people has comparable experience. Do you think these issues can also indicate only something peripheral and not with the brain itself? Thank you.
Was it your first SSRI exposure or you took them before?
Hi, yes, first time use basically. It is the most horrible experience of my whole life. It destroyed my life completely. And I got that toxic drug for a simple relationship issue, being 100% healthy, young person.
Just to be clear I had *some* improvements after the damage but PSSD stayed unchanged and many other symptoms still present like loss of feeling love, desires, loss of motivations and personality, loss of ambitions, fatigue, no interest in things, significant attention deficit, lowered brain functions, no feeling of flow etcetc.
Can CytoSolve be used to help us cure PSSD? Could it be run against some of the things mentioned in this PSSD publication https://www.ncbi.nlm.nih.gov/pubmed/3064058 or something else?
An MIT Professor biology expert who invented email called Dr Shiva Ayyaduri has created a technology tool that mathematically runs simulations to see how effective and toxic a drug will be to the system as a whole.
Is this something that you could use or would really help in our case?
Things like this could be used but they would need in this case to include TRP receptors and they probably don’t. The first step is to find the problem – so looking at the effects of SSRIs on TRP receptors would be a good bet.
Im reaching out to other PSSD suffers here in Canada. Our plan is to reach out to our Government and Healthcare system to donate to the remaining amount of the prize fund. I personally would like to see a million dollars donated.
It might be worth noting that automatic monthly donations can slip in under the radar so the total is likely higher.
Mario Negri’ s news is great. They have always been at a top level in their field. I hope it will work out.
Please find a solution to this thing.
It is inhuman to suffer like this
I donated and I will do that again. Looking forward to a cure. It’s so depressing to be stuck in this. My life is meaningless. I would like to feel again, to live emotions and to be a Human being again. There should be some intervention worldwide with Peter Breggin, Robert Whitaker, Roberto Melcangi, Laura Delano, and all other people who could join the fight, people who are respected and recognised and could help us speed up this process.
I hope those damages could be reverted
That’s wonderful! The involvment of Mario Negri research institute really bring a new great hope to find a treatment! Thanks to people who made it possible.
Someone (I think on the PSSD Facebook group) has created this.
I thought it was pretty good.
For me it isn’t 6 years I have suffered from PSSD, but in November of this year it will have been 13 years.
I think it’s important to remember that we should now include the issue of withdrawal whenever we communicate regarding the Prize Fund and the important developments. Withdrawal sufferers may well be a larger number than those who will openly discuss their PSSD problems,therefore bringing the reality of a possible breakthrough to a far greater number of ‘believers’.
This is great news!
Lets keep pushing, raising awareness, increasing the RXISK donations.
Hopefully the more research is done, the more pieces of the puzzle will fall into place.
OK, now I have a new group of people to pester about PSSD…. kind hearted rich people…
The government and Health Departments will be relieved to get a bit of a rest from me….
Excellent news finally. Professor Healy we thank you very much for your effort to help us, for us, your support is truly fundamental.
Is this the first time pssd will be researched in an actual laboratory ?
No – Irwin Goldstein and others have been doing research on it and Roberto Melcangi has been researching PFS as has a laboratory in Baylor College in Houston
thanks for the reply, what makes Mario negris lab any different ? I get he has a good track record but so does Goldstein and any other credible researcher.
Just out of interest, are Irwin Goldstein and Roberto Melcangi willing to share their findings and failures ( which are just as important) with each other and with Rxisk ? Or are their links to the topics just matters that have been brought to your notice from elsewhere?
I love the video you have put up on this blog.
Perfect way of getting actors to spread the message!
Def good news… 14 months full PSSD + blunted emotions + anhedonia. Went through a loooot in my my life, more than most people but this is a another level!
How about reaching Medical Medium on Twitter and get him to discuss about this in his radio show ?
I also remember a documentary on Netflix called “Diagnosis”, where Lisa Sanders crowdsources diagnoses for mysterious and rare medical conditions in a documentary series based on her New York Times . The crowd has good ideas and she literally reaches almost the whole world!