RxISK and Sharks

Two posts last week on RxISK Biohacking and david healy Stormy Weather raised issues about the Enduring Sexual Dysfunctions (ESD) linked to SSRIs and related drugs (PSSD and PGAD), finasteride and related drugs (PFS), and isotretinoin (PRSD).

In the biohacking post both sides of the “debate” were concerned about the people with these conditions who had taken their own life and the many who were thinking about doing so. We’re desperate, was the framing – What are you doing?  What are we supposed to do – just lie down and die?  Why isn’t someone doing research to help us?

Research

  • A group in New York are looking at PRSD but not chasing the biology of the condition.
  • A group in Queen’s University Ontario are looking at PGAD – again not chasing the biology but doing impressive work.
  • Irwin Goldstein in San Diego and Anne Oaklander in Boston are looking closely at these conditions and helping to raise their profile. The US scene/culture doesn’t lend itself to co-operative research.
  • A group in Baylor College Houston working on PFS.
  • Roberto Melcangi in Milan has been working in this area for some time – mostly on PFS but he recognises links to PSSD.
  • The Dept of Neuroscience in Maastricht University and Mario Negri Institute in Milan are co-operating but at the moment its only on how best to investigate PSSD.

This might sound like a lot but it’s almost nothing and these groups are not linking up with each other – not even the two groups in Milan.  The perception sufferers have that nothing is happening, and nothing is likely to happen soon, is correct.

How Long Must We Wait?

In the case of a similar type of problem in the 1960s – Tardive Dyskinesia – the thing that made a difference was a legal action.  All of sudden everyone took TD seriously.

At RxISK we are better placed than most to put out feelers about possible legal actions.  The inclusion of a mention of PSSD in drug labels in Europe last year should help with this.

But legal actions are usually against pharmaceutical companies and up till this you have had to have hundreds of people affected by the one drug all from the same country – essentially the United States as its impossible to take an action against Pharma anywhere else.

A group of those with sexual dysfunction on Propecia did put together enough people to take an action against Merck, but it made little difference.  I’m not privy to the details of what happened but what is needed from this kind of action is not the pittance of money that might be on offer but information on when a company like Merck knew about the issues and their thinking about the problem.

The Post-Finasteride Syndrome (PFS) Foundation have been intensely secretive about anything they learnt from this action – likely nothing because they were chasing the wrong thing or their silence was bought with a pittance.  They have also been intensely secretive about the results of research into which they’ve poured millions probably because the research didn’t bear out the original hunch of a small group of insiders.

Aside from the PFS group, no-one has been able to put together a big enough list of sufferers for several reasons.

The requirements to have several hundred people all affected by the same drug from same country makes it difficult to get anywhere.

In the case of the USA, RxISK could likely put together 200+ people on citalopram – escitalopram (same drug) and 100 + in the US but Forest who used to market this were just marketers and know very little about the drugs they sold so the documents are less likely to be of much interest and now they’ve sold out to Actavis who can hold their hands up and say – we’ve never heard of PSSD.

It might be possible to overcome some of these problems if the PSSD and PGAD communities got together.  The commonest cause of PGAD appears to be withdrawal from SSRI and related drugs.  This would almost immediately double the known numbers of people on each of the drugs involved.  But at the moment we have rigid PFS, PRSD, PGAD and PSSD silos.

Another reason is anonymity.

How Long?

Those with Enduring Sexual Dysfunction (ESD) face a situation similar to the one facing those with AIDs in the 1980s.  Then as now people were dying.  Then as now there was stigma linked to the illness. Then as now the need was to get the world to listen.

The AIDs community Came Out.  They put their names in the frame.

Apart from a very few people like Kevin Bennett almost no-one with any ESD has done so. The world just about came round to listening to the AIDs community.  It is not going to pay any heed to a faceless, nameless nothing.  Nameless, faceless – dead, never existed; what’s the difference?

The recent Stormy Weather posts on davidhealy makes the point.  Those with ESD are pretty well all decent people, who took their pills when told to, never expected anything like this to happen them, and never expected sex to become such a big part of their lives.  They blend into the mainstream far more than those affected with AIDs ever did and should be even better able to say to everyone else – look we are just like you.  We never did promiscuous sex or intravenous drugs or tried to subvert your morality.  You could be pretty sure you’d never catch AIDs but there’s a very good chance you or your children will get this or already have but don’t know it.

But to make a difference people need to put their names and faces in the frame.  They need to appear in person in front of politicians or outside the offices of regulators or researchers and do outrageous things as the AIDs activists did – daub buildings with blood, sit in meetings with politicians and bureaucrats dangling a ticking watch in front of them while they talk.

But instead, when a post with Stormy Daniels in it, followed up by a powerful image of Stormy and DJT appears on davidhealy.org, I get complaints from nameless PSSDers claiming to represent other nameless PSSDers, who say this is not us, we have nothing to do with porn – take it down.

What gives someone with no face or name the right to ask something like this?

Stormy Daniels and Venus O’Hara and others in the “industry” are exactly where people with these problems are likely to go – not to nice people like the Pope.

I’m sure having even the remotest links to porn and Jeffrey Epstein (and Bill Clinton and British Royalty) is not anyone with ESD, just as much as I am sure few if any of the ESD communities are ever likely to murder but to raise the profile of this problem someone is going to have to get close to murderous.  The scammers who prey on your vulnerabilities have no problem being murderous.  But the ESD communities (not the PGAD community so much) are inward looking. Everybody is caught in their own Hell when the times need you to Die on your Feet rather than Exist on your Knees.

Stormy reappeared in the news a few days ago when DJT confirmed her reports from years ago that he hates Sharks.  Many in the ESD communities seem happy to float in the water with sharks circling around them – with notable exceptions like those linked to RxISK who have written most of the PSSD posts, created the images for the Stormy Weather posts, and spend a lot of time writing to and camping out in front of regulators and politicians and calling into pharmacies to distribute literature.

Oh Lord, How Long?

Every day that goes by confirms that these ESDs are a new – never seen before type of problem.

People with PSSD, PGAD, PFS and PRSD cleverly and systematically, taking risks on the way, have done all the obvious things that conventional medicine and pharmacology would suggest they do without this making any difference.

This leaves pleading with Heaven as the only option but the pleas remain unanswered because there is no Expert up there who knows what is going on or how to put it right.

We don’t even know where these problems are.  Everybody thinks the brain but this seems unlikely.  Everyone thinks serotonin or androgen receptors but this is almost certainly not right.

The flip side to this should be that there is a chance to rewrite the pharmacology, and neurology and medical books here, a chance to discover new treatments that work without the drug having to be in your body and a Nobel Prize waiting for someone or some group who can solve the puzzle,

The flip side is that answering these problems might tell us far more about who or what we are than any amount of brain scanning neuroscience.  Albert Camus said that the ultimate philosophical problem is why not commit suicide. Giving life is the other side of this why go on living coin. The drugs that cause ESD cause suicide and stop us giving life – they smash into these central philosophical questions.  Nearly 1 in 6 of us is taking them – where are the philosophers when the Joker sets up a Philosophical Magic Show in broad daylight?

Everyone thinks scientists, philosophers and our rulers (if only to hang onto our vote) are interested in what reality is all about – in this case they either aren’t naturally interested or aren’t forced to be interested.  We who are about to Die prefer to Salute those who are going to give us the thumbs down rather than group together and force reality on them.

Make America White Again

Maybe very few people think DJT is interested in reality.  But he keeps on about Making America Great Again which lots of people figure this means Make America White Again – MAWA.  Well the single biggest thing likely to sabotage his plan is the drugs that cause ESD.  They are primarily taken by white communities and even if they don’t cause ESD are inhibiting sex so that people don’t make love so much and aren’t having children, in addition to dying from suicide more than other communities.

About 10-15% of the population take these drugs – this means 20% (in some poorer white communities likely closer to 50%) are not making love the way they would wish to.  And these figures may actually be a lot higher if you take into account other ethnic communities are not taking them and are instead multiplying away happily.

Worse again if you are white and do manage to make love on these drugs, you are more likely to have an abortion, more likely to miscarry or if you carry your baby to term, more likely to have a child born with autistic spectrum disorder or a serious birth defect.  It would be difficult to devise a more effective Great Replacement strategy than SSRIs, Propecia and Accutane.

Perhaps this is where Ryan Ballow, the Cortical Kid, could help.  He’s an army Vet, and a DJT supporter.  Rather than give vulnerable white people junk that risks harming them, he could get in touch with DJT whom he idolises and point out the obvious to the Chief – hey Boss what are we going to do about this.  Look at what the Deep State is doing to our community.

Would it be wrong to ally with Trump on an issue like this or the NRA on the issue of guns don’t kill people, its idiots taking SSRIs who do?  Depends on whether you think Joe and Kamala are more likely to bring this problem out of the darkness into the light.

Maybe Joe as a Catholic should be concerned.  But hey, we’ve already contacted Jose Mario Bergoglio about the issues and several Catholic dignitaries and got nowhere.  Reproductive rights – who us?  That’s not something we recognise.

Hunger strike outside the Vatican for Lent next year?

The Endgame

Here’s how this is likely to play out.  Sometime very soon, a company or companies will bring a new antidepressant or nerve pill on the market.  Part of their marketing will be claims that it doesn’t cause sexual dysfunction or suicide.

They will make an offer you can’t refuse to some ESDers.  We are going to fly you first class round the world, to conventions with audiences of thousands of doctors, put you up in the best hotels and all we want you to do is tell these doctors about your condition, how grim it is, the people you know who have committed suicide, the people injured by sharks taking advantage of them – we might take a risk and let you talk about the ridicule you’ve had at the hands of doctors.   That’s all – you don’t need to do anything else.  Just raise the profile of this awful problem.

What could be wrong with this?  This is how the issue of benzodiazepine dependence was recognised – how all problems with older drugs come to light.

This is how the problem gets buried.  Nobody bothers to even talk about doing any more non-existent research when Zacpro rides into town to solve the problem.  Time to be scientific and move on to some unsolved problems.   Not even the sharks will be interested to circle around you any more.

Which is a disaster.  Never in the course of human history have a group had so much potential leverage.  Up to a quarter of our communities are affected.  Many of these think they’ll be okay when they get off the drugs – soon – but in fact they can’t get off and if they did their ability to make love might well be even worse than it is on the drugs.  The wealth, privilege, access to media outlets and power that those affected with ESDs have way outstrips anything people with AIDs had.

The so called scientific literature on which these drugs are based is junk – ghostwritten, with no access to the data.  There are company documents showing obliteration of sexual function in young healthy men in 2 week studies done in the 1980s.  Companies knew about these problems back then.  The supposedly solid walls of Jericho just need a few people to march around them a couple of times and they will fall.

 

 

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