When the Personal becomes Political

This short talk was delivered 10 days ago. The video is Healy – Post SSRI Sexual Dysfunction is here.

Slide 1:            One of these two is on an antidepressant and unable to make love. Like SSRIs and Homicide, the sexual effect of SSRIs impacts significantly on people not on a drug.

Or one of them was on an antidepressant and years later is still not able to make love.  We have known about Post SSRI Sexual Dysfunction (PSSD) for 40 years.

Within 30 minutes of a first pill, the genitals of close to 100% of us who go on an SSRI turn numb or irritable. Orgasms stop being pleasurable. We lose interest in love-making. We are told this will clear once we stop treatment but, for many, it gets worse. The numbness gets worse. Love-making stops completely. No-one knows how this happens. We have no cures. Women, men, young, old, cis and trans and all ethnic groups are affected. Some recover years later, some never recover.

1. How come we have known about this for decades, but no-one put on these pills – and one in 7 are now on them – gets told about this hazard?
2. When we take this to a doctor why do we get laughed at and risk being detained in a mental hospital for our crazy ideas?
3. Why do doctors not look at or listen to us right in front of them? What are they looking at and listening to?  Do they no longer know how to link a drug to an effect? Do they have to ask permission to confirm what we know is obvious and, if so, from who?

Slide 2:            The antidepressant link to sex goes back to 1960. The first antidepressants were more powerful drugs than the SSRIs. They cure melancholia – a severe mood disorder SSRIs cannot help.  People with melancholia lose interest in everything, including sex. But doctors 60 years ago could distinguish a melancholia induced from a drug induced sex problem.

SSRIs are for mild depressions, where there is no loss of libido, but we get told by doctors our new sexual difficulties is caused by our depression not our pills.

By 1970, we knew one tenth of the dose of older antidepressant could cause genital numbness within 30 minutes which could be used to treat premature ejaculation.

By 1980, we knew that stopping treatment could cause an enduring sexual dysfunction.

In company healthy volunteer trials of SSRIs most volunteers complained bitterly of sexual dysfunction. In later clinical trials, doctors like me were told not to ask about sex. This left companies able to claim sexual dysfunction affected less than 5% of people.

By 1990, companies had a stream of reports of PSSD following treatment but told us nothing.

Slide 3:     For decades, people with PSSD wanted to remain anonymous. This played into company hands. But now groups like PSSD network have gone public – making a big difference.

Slide 4:            This is a still from one of the most extraordinary podcasts you will ever see.  I urge you to watch it in full.  In talking about their PSSD, three ordinary guys distill in extraordinary fashion a lot about what is wrong with health care today.  Here are some quotes.

Bryn:   Getting PSSD undermines your faith in the medical establishment and the whole system of science – the fact that none of these professionals understand this condition or know anything about it when we know we have it – it’s not some vague feeling.  Losing you libido is equivalent to going blind or deaf, it’s that level of sensory impairment

Roy:    The same can be said for losing your emotions – I felt I lost two senses – my sexuality and my emotions

Bryn:   If we want to be believed we have to remember just how incredible our story sounds… It’s a hard thing to wrap your head around… My Dad says it’s not possible a drug could cause these effects, it wouldn’t be on the market

Slide 5:        Today, if you have a side effect on a drug, rather than the drug being stopped the dose is likely to be doubled or you will be treated for diseases you don’t have.

You, or any doctor who figures you are right about what is wrong, will face a Tiananmen Square moment. You will be on your own against a ghostwritten academic literature, against regulators who have not seen the clinical trial data and who know negative trials of your drug are published in good journals saying the drug worked well and is safe but do not say anything. Over half of antidepressant articles claim a trial was positive when the reality is it was negative.

These articles are built into guidelines that dictate what your doctor prescribes.  The articles give the impression that if antidepressants don’t work it’s because they are not strong enough and the answer is to double the dose or add more drugs.

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Slide 6:            This image from NHS digital applies to regulators EMA and FDA – and all guideline makers.

NHS Digital say they list the most common side effects, but there are no sexual side effects here, which are by far the most common. When you ask them why they do this – they say in print we do not want to put people off taking their drugs.

Slide 7:            NHS Digital hint at sperm counts falling – in fact they plummet. Women are not told SSRIs double the rate of miscarriages, and terminations, and birth defects.

Slide 8:            A May 2019 BMJ article claimed Brits are not making love. It blamed depression not the meds. BMJ’s lawyers would have blocked publication if it fingered medication. With 15% of the Western world on them, at least 20% of folk are not making love the way they might wish and maybe up to 50% in some areas.

Slide 9:          A few weeks ago, the UK reported a fertility rate of 1.56 – way below the 2.0 replacement rate. Part of this is just an aging population. But part must be down to Antidepressants.

I’m Irish and with millions of other Irish we hugely improved the UK. I think immigration is a good thing. One third of births in the UK noted above were to mothers born outside the UK. Two-thirds of births in London are to a parent born outside the UK.

The native population takes far more SSRIs than immigrant communities. The fertility rate of the native population may be no more than 1.0. The figures for the UK native population would be the worst in the world – if most Western countries weren’t in the same boat.

These drugs don’t only affect the person you share a bed with – they are changing the Western World.

Medicines are chemicals plus information. The problem is a ghostwritten and often fraudulent medical literature and lack of access to data from company assays.  These are assays designed to get drugs on the market and get us living the lives Companies want us to live. They are not trials designed to inform clinical practice and help us to live the lives we want to live. We call this Evidence Based Medicine.

The chemicals will always be risky but I use them to treat people and in research we are doing on how the drugs cause this problem it is beginning to look like finding the answer may give us better antivirals and anticancer drugs. The research is likely to move forward much faster if companies stop denying this and other problems their drugs cause.