As will be clear from some of the helpful comments on the first post about a RxISK Prize, you are going to have to work with us to make this work.
Your input can take several forms.
The biggest block to making the Prize work is the same block everyone suffering from the problem faces – which is that despite being about sex, being horrific, and probably not rare, almost no-one knows about the problem.
We will write to all major Pharmaceutical Companies and alert them to this opportunity to alleviate a nightmare and gain some credit in the process. We will also write to the Presidents of Medical Associations and Colleges to get them to draw the problems to the attention of doctors and other healthcare staff.
We will post the draft letter to Pharmaceutical Companies on RxISK soon and this can be downloaded, adapted, and sent to your Member of Congress or Parliament or other political representatives.
There are probably lots of other people in a position to spread the word to whom a suitably adapted version of this letter could be sent, including the media, either local or national – if you know someone in a national position.
If you donate time or money you have part ownership of this and that means you can take it to places we might never have thought of.
If you have business experience or know how to build a business case, consider putting together a case for health providers. It seems likely services could save money and the economy would benefit if a cure were found. But for managers or bureaucrats to move they will need a well-argued case. If you can help with this, please start.
You might mention the Prize to at least one person you work with – or perhaps one per week, and get them to do the same. If everyone tweets or Facebooks or uses whatever the latest networking method is, we can overcome the greatest obstacle which is the need to make people aware of the existence of these conditions.
If you are German or French or Indian or Chinese, we need translations of the Launch Post and of this one. When we ran a petition some years ago, see below, we had it translated into over twenty different languages. This cause needs just as many translations and just as much dissemination. Even more than an environmental catastrophe in your country or region, this is a global problem and everyone everywhere can get involved.
The second greatest need is for donations. We need you to donate. If there are questions holding you back from donating, ask them. This will help us get all the answers out there that you and others need.
Not a cent of any donation you make will go into overheads of any sort. The input from RxISK is entirely uncompensated and will remain so. Every cent you donate will go into the Prize fund and stay there until it is won.
If no cure emerges and the Prize is not collected, majority opinion at the moment seems to be leaning toward refunding all money and we are keeping records of every donation so that we can do this.
The chances are that people with PSSD, PRSD and PFS have already spent over $100,000 on treatments of various sorts or lost that amount of money because they cannot get on with doing the things they would want to be doing.
A comment on the last post suggested we might fund people to go to acupuncturists to see if that works and another comment suggested Bowen Therapy had been very helpful for withdrawal issues that are likely related to PSSD.
One of the advantages of uniting behind a Prize is that we should get all these treatments for free. If acupuncturists or Bowen Therapists or anyone else can demonstrate they have a cure, we will have $100,000 we can give them.
If I thought I had a cure I would provide it for free. This would be a cheap way to get $100,000.
The third greatest need is to find other donors, perhaps a major donor.
The RxISK Team have a background in neuroscientific and medical research along with research in the history of how discoveries of the type needed are made. They are not usually made by careful research, which takes years and is often more important afterwards showing why the treatment works and how to improve on it. Discoveries come from new techniques arriving or other techniques being applied to a new problem or from someone who already has an answer but just doesn’t know about your problem.
This background combined with the nature of the problem gives us confidence that this problem can be solved and solved soon.
Solving this kind of problem has the potential to lead to a Nobel Prize – and this is likely to be an even greater incentive than money for lots of researchers or people in healthcare.
The chance to support an initiative with a real chance of leading to a Nobel Prize can be an incentive to donors big and small.
If you know Elon Musk or another big name or know someone who knows one, think about approaching them. The chance to be linked to a Nobel Prize effort might well be of interest to a major donor and if say Elon Musk was to step forward and fund the entire Prize, we would be happy to re-name it the Elon Musk Prize.
You may well be able to think of other ways to incentivize the project. If so let us know or put it into practice and see if your idea works.
We are learning as we go, and welcome all input. We’ve had lots of feedback about adding a Donate button and Prize page – and will put these in place in the next few days.
This is not just about crowd-funding or crowd-sourcing a cure but it is also about crowd-campaigning. You should not assume we know how to make this happen. We need you to come on board. If you have been involved in campaigns like this and want to write a post for us about ideas to consider we would welcome it.
Several years ago we invited you to engage in Extreme Petitioning around a question of access to medical data. This post contains a link to Extreme Ironing which may feed the imagination about things that might be done – you can run a sponsored ironing session while parachuting to earth to raise money.
The link also shows you where signatures to the petition came from. We will keep track of donations in the same way. The Isle of Man was the place with the highest number of signatures per head of the population. Perhaps it will be the same for donations. For any of you wondering where on earth WEA is – it stands for Western European Archipelago. Britain and Ireland to everyone else.
Meanwhile we need countries like Germany and France to get involved in spreading the word and Canada which had more signatories to the petition than anywhere else except New Zealand and the Isle of Man. The input from all over the world was impressive given that the petition was about the European Medicine’s Agency data access policy.
These enduring post treatment problems are a global issue.
Some of the comments on last week’s post and other RxISK posts about PSSD, PFS and PRSD show this is a condition that fluctuates. While it doesn’t go away, there can be brief spells of normalcy. This suggests a channelopathy. Channelopathies are a very active field of research at the moment and one reason to write to pharmaceutical companies is that they stand to gain so much if they help crack this problem.
You can very rapidly get to know more about these new areas than most doctors a decade out of medical school. You may be able to hook your doctor into some new possibilities. If we can engage the interest of doctors who may already have some patients not developing these problems because of other drugs they are on, we might make rapid progress.
In terms of persuading others, this is not just about the suffering of individuals. The problems lead to marriage destruction, and family breakdown. They may link to the growth of asexuality when these drugs are given to minors. The same mechanisms that underpin these problems may be playing a part in the rise of Autistic Spectrum Disorders in children born to women who have been taking antidepressants through pregnancy.
Finally, at the moment there is no right answer. Within the RxISK Team, some think the problems lie in the brain and some figure they are peripheral. The fact that some people report benefits while sleeping or dreaming suggests a brain input. The almost immediate genital numbing suggests something peripheral.
All ideas are excuses to do something. The more excuses we have to chase leads the greater the chance someone will stumble on the key thing.
Get involved. This could end up being one of the most worthy and exciting things any of us does.
Visit the main Prize page to see our current total.