Making medicines safer for all of us

On Wednesday February 10, I gave a lecture at the Therapeutics Initiative (the T.I.) in Vancouver about the Permanent Sexual Dysfunctions SSRIs and other drugs can cause.  See Sex and Evidence Based Medicine.

The damage done by these drugs often extends beyond a total and complete inability to feel sexual desire and pleasure to a total inability to feel pleasure of any sort and a profound loss of identity – a living death.

These Enduring Sexual Dysfunctions affect black, brown, yellow, and white.  They affect rich and poor.  Women and men. Young and old.  No group on earth is spared – although at the moment white people are bearing the brunt of this plague.

The February lecture makes clear that, while the conspiracy theories some white people have that they are being replaced are crazy, the enduring sexual dysfunctions are bringing about just this in reality.

White people are replacing themselves because so many of them are taking these drugs that close to 1 in 5 of them can no longer make love or when they do if they get pregnant the drugs double the rates of miscarriage, and double the rates at which any children born will be autistic, hyperactive, debilitatingly anxious from a young age or have serious cardiac or other physical defects.

White people are in the firing line because of their collective and individual belief in the promise of technical progress.  Black people are still more likely to turn to their people, a community, for support, and Muslims turn to the Ummah, which means roughly what The Invisible Body used to mean for Catholics.  No Protestants and probably few Christians of any sort under the age of 40 have any sense of what an Invisible Body might be.

I’m not bothered by White people being replaced.  I am bothered by the people with enduring sexual dysfunctions who are in touch with me who kill themselves or seek Medical Assistance in Dying for this or the related Treatment Resistant Depression.

The February lecture has introduced a censorship into the T.I. because 2 of the 300 people in attendance objected to one slide featuring the Real President of the United States. The version of the lecture now on the T.I. site no longer features the original slide (number 10). For weeks until a compromise was reached, T.I were happy to cut the slide and with it the chunk of lecture that went with it without which the lecture doesn’t make sense – this was one of the two ventricles that kept the heart of this talk beating.

They are now planning to join the pharmaceutical industry in screening everybody’s slides before they give a talk.

A slide that once would probably have given Donald fond memories – available on Sex and Evidence Based Medicine. – caused more concern than the serial and increasing deaths of young people who die because of their accurate perception that no-one gives a fuck and the system is going to do nothing to try and solve the problem.  Die because they get laughed at by doctors, and other healthcare staff.

I can’t breathe

On Wednesday February 10, as I gave this lecture, Janet, a mother in America, working in a senior healthcare post, found herself unable to breathe.  She had been emailing me regularly for over a year saying this day would come.  She emailed me when she caught a breath.

I can’t breathe my baby is gone due to medicine that was supposed to help him. He is in God’s arms but I want him here.

Her 20 year old son, Jordan, who had Post-SSRI Sexual Dysfunction (PSSD) had taken his own life as she had known for over a year he would.

If it was my son, I’d imagine I’d have homicidal thoughts, like many black people have after encounters with the police, Being Black, and I can imagine it might be difficult for me not to act on them.

Medical Kidnap

S, a young woman, somehow plucked up the courage to come to me some years ago, trusting her parents who both worked in healthcare.

She had been shy and anxious starting a new job and mentioned this to a family doctor who showed more wisdom than most and reassured her that he would support her. But on another visit to the clinic a different doctor supported her in a different way – giving her an SSRI.

She disintegrated rapidly, ending up in hospital, diagnosed as schizophrenic and given a cocktail of drugs every one of which made her worse.  Her father, a doctor, was powerless to help. He rapidly became viewed by the system as part of the problem rather than the solution which he sensed lay in the opposite direction to what the system seemed hellbent on pursuing.

There are nearly 30 posts under the Medical Kidnap heading on the RxISK blog all powerful and some of the earliest ones in particular featuring Teresa Pocock and S in Kidnapped Daughter, Kidnapped Daughter 2 are chilling.

Her parents finally got S back.  Badly damaged.  They figured they had no option but to take her out of the country and finally to bring her to see me.

She has remained drug free ever since and has slowly recovered from a lot of physical damage and even more damage to her confidence.

Years later, she remains as unwilling to see any doctor for anything as Barack Obama in shabby clothes, or Joe Biden if he were black, or any real black man would be to walk into a police station and mention they were having homicidal thoughts after being jumped on by some policemen a few weeks before – see Being Black.

She is just one of many people I know in a similar situation – people who might make a bad mistake in response to an invitation to come along and see one of our doctors, and say ‘I’d sooner die than go to see Dr X’.  Its not safe dealing with health systems these days.  Most people don’t know this.  A growing number have learnt the hard way.

Discarded by GSK

Last week, RxISK told Shane Cooke’s shocking story in Discarded by GSK.  Here was a young man driven into a delirious state by a drug.  It should have been clear to those treating him the drug was causing his problem.

An idiot of a judge jailed him for two years when he had done relatively minor damage to the property of a service who said they would help him, but made everything worse at every step, and in the end refused to help at all despite every wall of its buildings being festooned with slogans like We Help because We Care.

Shane’s case echoes that of the Guildford Four – four innocent Irish people jailed by a corrupt English police and legal system that wanted to be seen to have caught and incarcerated people no matter – any Irish fucker would do.

Gerry Conlon, one of the four, the hero of the movie In the Name of the Father never recovered even after they won their freedom 15 years later despite the very heights of the British legal system making it clear that they should stay in prison, even if innocent, in order that the public doesn’t lose confidence in the police.

Shane was imprisoned in order that the public doesn’t lose confidence in its drugs.

Most Irish people know where they were when the Guildford Four were released just as most Black people (and lots of others) know where they were when Barack Obama came out on a Chicago stage as President Elect. But Irish people, as my Black arm-wrestler made clear to me (Being Black) have never had to put up with anything like what Black people have to put up with.

The one moment my arm wrestler showed some discomfort was when I mentioned that the horrors the Irish have been through haven’t made us nice people – we are among the most bigoted, and racist people on earth in my opinion. He couldn’t accept that this might be true for Black people also – even some of them.

In my opinion Black people in general are a lot more decent than white people but being oppressed does nothing good for the soul.  Being an oppressor does nothing good for the soul either.

Shane’s life was destroyed by prescription drugs.  If I were him I’d have been very inclined to give the system a legitimate reason to jail me.  But what Shane is now doing shows that somehow some of us rise above unimaginable setbacks and get to a point of doing things to help others.

Black, or Indian, or Part of the System?

Some will never get a chance to give back – see The Man who Thinks he is a Monster.

James Holmes was put on Zoloft for shyness by a University shrink, who cranked the dose up as he tried to intimate that things were going badly wrong. She told him anything that happened was his responsibility.

What happened was 12 people died and 70 were badly injured at a premiere of Dark Knight Rises in Aurora Colorado in 2012.

Holmes was innocent (in my opinion – having spent time with him). But he is now serving the third longest sentence in US history because his public defenders felt they couldn’t persuade a jury that the entire literature on which all doctors depend is a Fake Literature, ghost written, sometimes claiming a drug works well and is entirely safe when FDA know the trial data is negative and points to serious problems but they say nothing.

How do you take a jury to a point like this.  In New South Wales in 2001, a prosecutor (like Kamala Harris once was) told the judge it was obvious this man, David Hawkins, didn’t kill his wife. The Zoloft he was on was responsible.  Hawkins walked free.

My Black man and every one else featured in this post and me and many of the rest of us figure we have to stick to due process – take our grievance to the law rather than take the law into our own hands.  Pretty well no-one knows that when it comes to the effects of drugs the legal system is entirely corrupted and will jail us rather than let people lose confidence in their drugs.

Rather than let a jury and the media hear that the entire literature on these drugs is ghostwritten etc, prosecutors like Kamala Harris do a deal with the defence to lock someone away till after the earth has burnt to a cinder in exchange for not-executing them – even when someone like James Holmes would have preferred to be executed.

The families and friends of everyone killed or injured in Aurora are being denied the truth of what led to these deaths and injuries.

Kamala – are you Black or Indian or part of the System?  What about you Alexandria?

Brenda Hale, a.k.a Spiderwoman, until recently the Chair of the UK Supreme Court was  viewed as the bravest women in Britain in 2019 when she faced down the government.  But when it comes to the Holmes, Cooke and O’Neill issues which call into question the capacity of the justice system to do what it is supposed to do without fear or favour, Brenda is a System woman – see  The Perfect Killing Machine and There is no Sanity Claus.

Shipwrecked Heroines

There are many heroines, and a few heroes, in Shipwreck of the Singular. Right up there at the top of the list is Anne-Marie Kelly.  (This post might have worked well for International Woman’s Day except that tokenism is exactly what these issues do not need).

Put on an SSRI she became alcoholic, lost her job and ended up with a criminal record and jail sentence for annoying the police. She figured the Paxil she was on was causing the problem but got laughed at by her doctor and then by Alcoholics Anonymous, who told her that her thinking proved she was an alcoholic.

As things fell apart, without any background in healthcare, and even though an early school drop-out, she began researching SSRIs and worked out exactly what was happening and how to put it right – teaching me things about the Serotonin system in which I have a PhD.

Leaving me figuring that Motivation counts for more than Expertise.

She too was jailed by a miserable magistrate and had her appeal to have her criminal record overturned by an equally miserable and self-righteous judge who paid no heed to the fact that while almost no-one else agreed with her, the pharmaceutical industry did agree and were developing drugs based on her ideas as her expert report pointed out.  The failure of her Appeal made it impossible to get a job.

Reflecting on an unbelievable nightmare, kept going perhaps to some extent by the fact that telling her story has saved hundreds of others, helping them to pull themselves out of a downward spiral into chaos and disaster, her view is

Shipwreck takes on the issues in Being Black and makes the claim that whether we are Black or White, Female or Male, Old or Young, Rich or Poor, the most profound divide between us is the divide between the Fortunate and the Unfortunate.

Not even losers like the company of losers. The ultimate losers in our society are the Drug Wrecked. They have had acid thrown in their face.  They need to find an Ummah, a People, an Invisible Body.

Even more than those afflicted with AIDS in the 1980s and 1990s, the pioneers in doing this have been the Indian women disfigured by acid thrown in their faces who have found each other and provide a support they can get from nowhere else.

This world desperately needs heroism like this, leadership like this – from the bottom up – rather than looking to experts or those who claim to represent ‘us’ but increasingly make vassals of us.

You’re a black man walking down a street with a friend.  A cop car pulls up and two cops get out and spread-eagle you and your friend up against the car or a wall. They rough you up while they search you.  You ask why have they stopped you and they say they don’t need to tell you.

[There are moves toward having police wear bodycams that record exactly what happens but you can learn to be threatening in more subtle ways than the transparent ways we once had].

Okay you don’t look like you’re a doctor but you are in your early 50s so you’re not likely to be up to much that the cops would be interested in.

Worse still, a few weeks later two cops call to your house by mistake. Spread-eagle you on the floor.  When you ask what is going on, they say White Privilege.  We can do this to any black fucker we want to.

Leaves you feeling homicidal.  This is a problem for you because you do have a background.  Where you came from insults like this get sorted out and its not by due process.

Maybe because you know you have retaliated in the past, in lets say a manly way, you are now worried.  Homicidal thoughts are no good.

You go along to the ER where a doc assesses you. He’s not white which may play a part in his difficulty. He doesn’t think you’re mad.  No voices, no delusions, no craziness. He offers you some Seroquel which gets dished out by the bucket load in prison.

You get bounced to a shrink.

Crazy Shrink

Just your luck, you meet a crazy shrink.  The dude listens and says hey you’re not crazy.  Homicidal thoughts in a situation like this are not a crime and not a sign of insanity.

Said he’d felt this way often about the management in his hospital.  Usen’t to be like this but was getting more like this every day in schools and universities and healthcare and he figured loads more people were getting to know what it was like to feel homicidal.  Better to know what it was like to have homicidal thoughts before he died than not, he said.  Silver lining to the cloud.

And with all that black lives stuff going on, he said, you’ve got to deal not only with what happened but also with constant reminders of it.

Black Lives crap you say.  They march up and down.  They preach.  But they ain’t getting anywhere are they?

No he agrees.

Ultimate Crazy

Then out comes the ultimate crazy.

What he says if you were to go down to the cop-shop and go in and say to the guy behind the counter in the lightest way you can with a gentle, open kind of smile –

‘Hey man, this is going to sound crazy but I’m doing it on my doctor’s instructions.  He said the next time I have the homicidal thoughts to come down to you guys and tell you.  They started happening after two episodes a while back and come in waves.  He said I should just mention them to you and then walk back home again and I’d feel much better.  So I’ve done it and I’ll head home now and see if he’s right’.

Crazy man. He did say, though, check it through with some friends before doing anything.

He also said he’d give me a letter on University headed notepaper with my name on it and his signature at the end of it saying that he had indeed said just this.  I was welcome to show it to the cops if they looked like they weren’t pleased at the idea of switching jobs from cops to therapists.

There’s some White Privilege thinking.

Hey dude even if nothing went wrong, they’d put a note in my record saying black dude turned up saying he was homicidal.  Next time the guys jump on me in street they’d see it there in my record.  I might be shot in self-defence before any questions are asked.

They almost certainly wouldn’t let me walk out.  They’d call the Regional Assertive Community Team specially put in place for homicidal people who would have no option but to lock me up in hospital for observation.

That didn’t stop him – you’d have my letter with my phone number on it.  They’d have to call him, he said.

He keeps telling his friends who are also homicidal about the management, he said, never let them refer you to occupational health.  Occie health are not going to say its managements fault – they will locate the problem in you, give you pills, sign you off work. That will be the end of you.  No-one will pay any heed to you again ever. You might as well kill yourself – hey the pills might even prompt you to do just this.

What, he said, if you got away with it – you have a friend with you and we have a camera crew, well maybe just one guy with a phone, to record what you are doing and you do get back out the door in one piece and can record what happened?  This could go viral.  Think of it – every cop-station in America might be ‘visited’.  They might become therapy centres.

What Next

You tell him he’s been very helpful and has given you a lot to think about and now you have to go get some messages for your daughter.

Handy thing about Covid.  It all happens on the phone.  If it was in his office, it could be more difficult to get away.

So what do you do?  Take him up on his offer?  Is there a way to do this without coming out of the cop-shop feet first?

Maybe tell the cops there’s this crazy doc trying to kill you and can they do anything about him.  He said he had homicidal thoughts about the managers of his hospital.  Why didn’t he go down to the cop-shop to relieve his thoughts or into the management office?

Comments

McMaster University like many other institutions in Canada and elsewhere has been responding to the Black Lives Matter movement and looking to get to grips with racism.

In the course of my University work in the last year, I have met and had conversations with many amazing people.  Among them, three black men were unforgettable.  One had Barack Obama levels of reasonableness and generosity of spirit and a deep calmness in the face of extraordinary difficulties.

A second was the one I felt I could most identify with – very human.

The third was maybe the healthiest. Talking to him was like arm-wrestling, with him grinning because he figured there was no way he could lose.  He would not concede the Irish experience at the hands of the English was remotely like the Black experience. Nor that black women had it any harder or even as hard as black men.

All three have shaped this post which is not about any one person.

This blog gets some marvellous comments from people who have tuned into its quirks.  It would be great if regular contributors could save any comments for next week.  This post needs comments from people who have never been near here before.  A follow up post will be open to all and will bring up similar issues.

The issues here lie at the heart of Shipwreck of the Singular  which asks if being black is the worst thing that can happen someone.

See accompanying MAiD in Canada and TRD.
Illustration: Lost in Medication © created by Billiam James

Canada put Medical Assistance in Dying (MAiD) legislation in place in June 2016. This allowed for medical assistance in dying in cases where death was reasonably foreseeable. In 2019, in Truchon v Attorney General of Canada, the Superior Court of Québec declared the “reasonable foreseeability” criterion unconstitutional. This decision forced a review of the original legislation.

The original legislation required an individual to have a “grievous and irremediable medical condition,” meaning that a person:

• has a serious and incurable illness, disease or disability,
• is in an advanced state of decline in capabilities that cannot be reversed,
• experiences unbearable physical or psychological suffering from an illness, disease, disability or state of decline that cannot be relieved under conditions that the person considers acceptable,
• is at a point where their natural death has become reasonably foreseeable, taking into account all medical circumstances, and not requiring a specific prognosis as to how long they have left to live.

The review proposed to:

“retain all existing eligibility criteria but would remove the requirement for “reasonable foreseeability of natural death”. It would also expressly exclude persons suffering solely from mental illness”.

An amendment eliminating the exclusion of people with mental illness was proposed by Senator Stan Kutcher, arguing that mental illness is as real as physical illness, that it can lead to great distress and routinely leads to people attempting to take their own life.

The arguments against this amendment express concerns that people with mental disorders may be pressured to opt for death, essentially for the convenience of others and of services that are not adequately funded.

MAiD and Sexual Dysfunction

On February 10^th 2021, the Therapeutics Initiative in Vancouver hosted David Healy from McMaster University in a webinar entitled Sex and Evidence Based Medicine.

The full lecture, with text and slides are available Here.

Post SSRI Sexual Dysfunction (PSSD) is one of a number of enduring sexual dysfunction syndromes that include Persistent Genital Arousal Disorder (PGAD), Post Finasteride Syndrome (PFS) and Post Retinoid Sexual Dysfunction (PRSD).  These states are triggered by treatment and will endure for decades after treatment stops in most cases.

Enduring sexual dysfunction does not convey the horror of the conditions, which typically produce numb genitals, an inability to orgasm, a profound loss of libido and a more general emotional disconnection or anhedonia.

In the case of PGAD, women faced with the opposite problem of irritable or painful genitals resort to having the nerves to their pudendal area cut or to clitoridectomy to manage the discomfort. None of these options help.

There are no cures for these conditions. The distress is great. There are no remedies for the distress. Medical services do not recognize the conditions, even though as of 2020 drug labels do, and healthcare staff routinely ridicule patients adding to the distress. Aware that there are no cures and no prospects of a cure, some patients know to me have committed suicide. Others known to me have explored the possibility of medically assisted dying.

Pharmaceutical companies have known about the risks for decades.  Regulators had reports of these conditions in the mid-1980s. Neither warned the public or doctors. As a result, hundreds of thousands have ended up taking antidepressants, isotretinoin (for acne) and finasteride (for hair loss), many very young, who in many instances did not need these treatments and might not have opted to take them if decently informed.

At present there are approaching 100 Canadians with known PSSD and over 700 with known PGAD and a further cohort of people with either PFS or PRSD.

This is a significant underestimate of the numbers who likely have these conditions but don’t yet know about them.  PSSD and PGAD typically declare themselves when patients stop treatment and on-treatment sexual dysfunction continues and often gets worse.

Roughly 15% of Canadians take antidepressants (5 million people), a majority of whom do so because they cannot stop (c 3 million). If they could stop, many would expect the sexual dysfunction caused by being on treatment to improve but just the opposite is likely to happen for some people.

MAiD & Enduring Sexual Dysfunction 1

The Enduring Sexual Dysfunction Syndromes are serious and incurable physical illnesses.

They are not mental disorders. They are the physical consequences of treatments some of which are given for mental disorders and others for physical conditions.

The distress they cause appears to be as intense as is the distress caused by conditions that have hitherto led people to seek out MAiD when death is reasonably foreseeable.

There are at present no prospects of a cure for these conditions or for relief from distress.  Well-intentioned efforts to help are likely to compound the problems and sap rather than support the resilience of those affected.

MAiD & Enduring Sexual Dysfunction 2

In addition to concerns about poor services that might push people toward MAiD, the Enduring Sexual Dysfunction Syndromes suggest another factor should be considered.

These illnesses result in part because the medical literature on on-patent drugs is ghost-written and there is no access to the data from healthy volunteer and clinical trials that were undertaken to bring these drugs on the market.

Access to the trial and related data might have made these hazards clear and made for different conversations between doctors and patients.

The distress patients with Enduring Sexual Dysfunctions experience stems not just from ridicule at the hands of healthcare personnel but from a profound sense of being deceived. This sense of being deceived underpins a perception that our institutions have no incentive to find a remedy.  For pharmaceutical companies to research the problems would require an admission their treatments and practices cause the problem. Tobacco and recent finasteride litigations have shown they are unwilling to do this.

Senator Kutcher was an ‘author’ on a famous study of paroxetine given to children commonly referred to as Study 329. The paper was ghostwritten. It is unlikely he has had access to the trial data other than the patients he himself entered into the study. Study 329 led New York State to file a fraud action against GlaxoSmithKline, the makers of paroxetine. Based on Study 329, the US Department of Justice later took an action against GlaxoSmithKline that in 2012 resulted in the then largest sum handed over to resolve a corporate case of this kind – $3 Billion (USD).

The process of ghostwriting articles and sequestering clinical trial data began in earnest a little over 30 years ago. Since then, the time between doctors becoming aware of and generally accepting that the treatments they use come with specific hazards has increased from roughly a year or two to several decades. For PSSD, PGAD and related conditions this interval between first description and recognition is now three decades and counting.

Canadian patients with Enduring Sexual Dysfunctions are certain to seek MAiD because of the distress occasioned by their condition. They have been put in this position by practices that prioritize commercial considerations over scientific, moral, or clinical considerations.

When considering MAiD for PSSD if this is the patient’s wish, perhaps doctors should be willing to support death by hunger strike outside the headquarters of the company making the drug that caused the condition, or the university/hospital that condones practices like those Senator Kutcher engaged in.

David Healy MD         February 17^th 2021.

This post is one of two attachments to a letter to 3 Canadian Members of Parliament.

For those new to the Enduring Sexual Dysfunctions – PSSD, PGAD, PFS and PRSD – there is a page about them on RxISK.org along with a good deal of published literature that can be downloaded.  There are many additional posts on RxISK about both these conditions and Treatment Resistant Depression.

The University of British Columbia in Vancouver hosts The Therapeutics Initiative an independent group who evaluate all medicines for effectiveness, harms and value in a regular series of Drugs Bulletins dealing with new drugs or emerging problems with older drugs.

They were set up in 1994 just when evaluations of this type and Drugs Bulletins were falling out of favour.  When we were only going to be allowed Good News about drugs in Guidelines with major medical journals increasingly scared to publish about the harms. We would all be in trouble without T.I. who do the world a favour not just people in British Columbia.

Alan Cassels, who will be known to many as the author of Selling Sickness, Seeking Sickness and many other ahead of their time books is a key member of the T.I. group producing many of the Drugs Bulletins.  Alan became aware of Post SSRI Sexual Dysfunction (PSSD) and related sexual problems through the efforts and bravery of Canadian sufferers like Emily Gray, who has helped set up a network of Canadian PSSD sufferers, whose efforts helped prompt Health Canada to recognize the condition.

On the back of this, Alan invited me to talk at one of the regular educational sessions T.I. run. The talk happened on February 10th and the video will be on the T.I. site imminently.

It is also here and on the Shipwreck of the Singular site
Sex and Evidence Based Medicine.

The Text for the talk that contains a little bit more than appeared in the lecture is here – Life is a Bidet Old Chum.

The Talk Slides are here – Evidence Based Medicine Shipwrecked.

Sex and Evidence Based Medicine is an element of the broader Shipwreck of the Singular argument, which is that Evidence Based Medicine is leading us astray.

It would be great if any readers having listened to the lecture can disseminate the material as far and wide as possible.  Better again, disseminate everything and then listen.

David Healy