This recent Mad in America Webinar on Stopping Antidepressants introduced the idea of SSRI Dysregulation. Terms like Dependence etc band people with problems on SSRIs in with ‘substance abusers’.
Substance Abusers do not get a good deal from services that do not recognize the mainstream services and the drugs they hand out have often caused the problem – drugs like SSRIs. But in addition the very term abuser is deeply stigmatizing and in the case of SSRI induced problems badly misleading. The problem becomes more obvious if rather than saying Drug or SSRI Dysregulation we say Iatrogenic Dysregulation.
The Iatrogenic Element
Nearly a year ago I was invited to participate in Dr Xand van Tulleken’s Cure or Con program on the BBC, tackling antidepressant dependence. Aoife emailed me saying:
We have a film of a lady who experienced really negative withdrawal symptoms after coming of anti-depressants and we feel you could provide knowledgeable advice and take-home information for viewers. We’d be keen for you to discuss how often this is happening, informed consent and what people should do if they’ve been affected. Our main priority is to reassure viewers – those who are currently taking anti-depressants or may be in the future to follow medical advice and not to make any changes to their medication. Aoife
I responded:
Aoife, I don’t think your good intentions about not doing anything without medical input can work out. The dependence and withdrawal from antidepressants scene is a quagmire. Some doctors are bound to make things worse. I’ve given up telling people not to be guided by their own lights.
I heard nothing back from Xand. I’ve got history with the Van Tulleken brothers – Chris, Xand’s brother, also a doctor, came to cover the issue of antidepressants and children and chickened out of covering the story – The Greatest Failure in Medicine.
Chris and Xand sell themselves as medically qualified investigative journalists, taking on the tricky issues – the kind of people willing to defy censorship, and as doctors ideally placed to do so on health issues. But like everyone else they seem to bow to the pressure to avoid deterring you from taking your antidepressants.
The problem is that many of us, if we become suicidal, especially out of the blue for no obvious reason, visit helplines or websites to understand what might be happening and get advice or support.
Our meds are more likely to make us suicidal than the mental health conditions for which we might be given meds – even in the case of schizophrenia. Despite this, these helplines and websites never mention that our drug might have caused or be causing our problem.
The helplines or websites have been given legal advice, as have the BBC and other media outlets, that to raise these issues with you would be to engage in the practice of medicine, for which no-one manning these lines, websites or in media outfits is trained. Even if they were doctors, assessing whether your drug is causing your problem is ideally best done by a doctor who knows you – and has seen you on and off treatment.
This is the traditional legal view of the practice of medicine. But it doesn’t take into account that you wouldn’t be consulting a helpline or website, trying to work out why you felt so weird, unless your doctor had put you on a drug without warning you that this might be the result.
So if you return to the same doctor and raise the problem, and in particular if you mention a helpline or website or TV program that has told you your drug might be causing your problem, you are likely to get short shrift, to be told to stop consulting Dr Google and to have the dose of your drug doubled.
Everyone on a treatment causing problems feels this in their bones and is very unlikely to consult their doctor for fear of things being made worse. But no-one tackling these issues and trying to help by running a website, helpline or making a media program or running a newspaper in which an article features understands the point.
We have reached a point of Iatrogenic Insanity – a Catch 22 point or in this case Catch 62 – See The Empire of Humbug
Following an article by Katinka Newman a month earlier, RxISK picked these points up in more detail in two posts in May this year Is Your Treatment Making you Suicidal and Reducing the Risk of Treatment Induced Suicide
Katinka’s Petition
In April this year in a Daily Mail article Downward Spiral Katinka Newman outlined the case of a woman who was put on a benzodiazepine for no good reason and spiralled out of control.
The response to her article led Katinka to set up a petition The Question that will Save Lives which now has well over 30,000 signatures.
It has been translated into several languages. See Question that will Save Lives. The question was the question helplines etc are not allowed ask – do you think your drug might be causing your problem?
Yoko Motohama and Vincent Schmitt and others took the idea further and began writing to bodies in their respective countries (France in Yoko’s case) asking what are they doing to warn about the risks of suicide medicines pose to young people.
Dear Sir/Madam,
I learned that the 10th of September is World Suicide Prevention Day. On the 10th of September 2021 my son Romain died by suicide at age of 16 years.
Based on my research since then, I wonder if you may be missing something which would have saved lives, including Romain’s. I have learnt that there are over 100 different medications whose side effects can cause people to take their lives. These include antidepressants, antipsychotics, benzodiazepines, anti-malarial tablets, acne medication and some antibiotics.
I was unaware until my son’s suicide, and even for a while after his death, that suicidal risk is a side effect of many drugs, particularly drugs that are supposed to help with depression.
Clinical trial data shows that for at least 2%-5% per cent of people, antidepressants can have a paradoxical effect and cause people to become suicidal – this even applies to healthy volunteers.
In 2023, nearly 936000 young (12-25 years) people were prescribed psychotropic drugs at least once in France.
When someone is worried about suicide, one goes to seek information on a website or helpline. So I looked for the information regarding the risk of treatment induced suicide on your website but I could not find any such information.
Could you tell me why you do not mention such important information?
I look forward to your response.
Yoko Motohama
Yoko got a ‘bizarre’ response from Richard Delorme MD PhD, Medical Director of the Child Brain Institute,Head of the Child and Adolescent Psychiatry Department, Robert Debré Hospital, Paris
Thank you for your message and the attention you pay to our website. Indeed you are right. We are going to write a sheet on the prevention of suicide risk related to taking medication. This is indeed a critical point in particular there are major risks with taking medication from the parents’ pharmacy in particular paracetamol or oral antidiabetics ..etc etc.
Best regards
This response brings a famous image to mind.
Responses like this led Vincent, Romain’s father, to ask whether the Helplines, Websites should be shut down and programs like those that mention antidepressant hazards should be prevented from doing so. If they cannot do the job – which they are told by lawyers they can’t – half-doing it risks causing damage.
The usual rationale given by the powers that be for not mentioning the hazards is that they do not want to deter us from getting the benefits.
In this case though, in the strange ‘market’ that is prescription-only medicine, helplines, websites and media input risks making things more dangerous. They risk being categorized as misinformation and being put out of business but they also risk adding to a patient’s desperation and very likely leading to an increased drug dose or additional drugs being thrown into the mix.
The fabulous image from Bill James, linked to our concerns about Humira some years ago brings out the dilemmas.
Things have got worse since the heyday of Humira. Doctors far more openly view even the warnings in a drugs label essentially as Misinformation or the equivalent of a May Contain Nuts label put there by companies or regulators to cover their back but not something to be taken seriously.
Good and Evil
Good and Evil likely conjures up images of clearly mythical creatures or creations like Angels and Demons or perhaps psychopaths. Images that stem from our imaginations rather than the real world. A more philosophical definition of Evil is that it is the absence of Good.
Where we have had a chance to do good but have taken some easy option instead we have done Evil. Being Good in this sense will often involve Courage – not taking the easy option.
Gandhi once said that He would do a Great Evil must first of all persuade himself he is Doing a Great Good.
This thinking underpins Pharma’s efforts to bring drugs on the market – they think they are Doing Good. In their case they also want to Do Well from Doing Good, which to some extent will always sabotage everyone in business so that things that might have been very good as not quite as good as they might have been.
Back in the 1950s Regulators thought they were Doing Good by making all new drugs available on prescription only. We who were ignorant of drugs would be Guided by the people who knew all about them – doctors.
Doctors figured they would Do Well out of Doing Good in this way – but look increasingly likely to put themselves out of business as Pharma licking its lips at the thought they only have to market to a relatively few consumers ensure these consumers do not have a thought in their head not put there by Pharma – operating through NICE and other Guidelines and the New England J of Misinformation and other journals.
Nurses and pharmacists and lots of others could do this job and much less expensively.
Prescription only dynamics have brought us to a point where doctors practice pure religion rather than medicine or science. The drugs they prescribe have been transubstantiated from drugs into sacraments – see Healthcare gone Mad.
The idea drugs might have adverse effects these days is not just viewed as misinformation but increasingly as blasphemy. A doctor’s job as they see it, if faced with your heathen or crazy ideas, is to convert you to the one true faith – and if you die in the process at least you will have died right-thinking.
Doctors who don’t manage to do that, along with you and I, face an Inquisition or at least a degree of censorship to rival anything found anywhere else in human history.
Thirty years ago in The Antidepressant Era, I ran a thought experiment – aimed at bringing out the forces shaping the healthcare world in which we are now operating. I asked readers to consider what making antidepressants and all psychotropic drugs available over-the-counter (OTC) might have meant for the way healthcare looks now. One obvious point is we would all be much less diseased as companies would not have had to make you depressed in order to give you an SSRI.
There was no intention to suggest that OTC would be a good option – certainly not a good option for me as a doctor making a living out of prescription-only medicines.
But an increasingly extraordinary feature of the situation we are now in is that you would all now likely be a lot safer if all these drugs were over-the-counter. You’d know the drug was causing your problem and would be able to stop it and confirm this without being told you absolutely should not do this without consulting your doctor.
You would not be shaking with fear thinking of telling your doctor the drug s/he gave you is causing a problem.
RxISK tells those of you who fill RxISK reports, for which we are very grateful, that these are designed to strengthen your hand by letting your doctor know you have reported what s/he has done and if things go wrong, this report might come back to bite them. It also gives you an Expert Score which should cause her/him to stop and think but it looks like everyone is too nervous to bring it to their doctor.
We are grateful for the reports which have helped produce articles telling the medical community, the drugs do cause the problems you say they cause – but it is getting increasingly hard to get journals to accept articles that talk about the harms of drugs.
What keeps us going is the strength and courage of many of you who do take up the challenge to force the system to stop and look at and listen to you. It is you who are bringing Good out of Evil that are making a difference and if we can manage to continue doing this, at some point the system might be forced to change.
Harriet Vogt says
What suicide services like Samaritans are actually saying – I think – when they state, ‘we not staffed by medical professionals’ – is that they cannot and do not want to take LEGAL responsibility for whether a suicidal person lives or dies.
I feel deeply for Vincent – and Yoko – and understand their disgust with the moral failure of helplines, when people are being driven to take their own lives – because that is, in effect, the only way to survive the suffocating adverse effects of many drugs. However, as you say, ‘you wouldn’t be consulting a helpline – unless your doctor had put you on a drug without warning you that this might be the result’.
That for me is THE POINT. The power of Katinka’s petition and Yoko’s letters are not that they are going to persuade services staffed by lay volunteers to take on legal responsibilities, but because they throw into stark relief the heart of the problem. Suicidality is there in the PILs and in the guidance – but prescribers are still failing to warn – and prefer to keep THEIR DRUGS bathed in a sacramental light.
If we look at UK suicide ‘statistics’ – we know that est. one third of people who take their own lives, have seen a GP within the last 4 weeks. We know that est. one quarter of people who suicide are incarcerated in psychiatric units. We know from legal claims and commonsense that drugs – dose change, switching, cascading – will be involved, though not necessarily causal in all cases. Louis Appleby persists in mindless ‘population level’ analysis of demographic factors etc. – even now in the face of the highest number of suicides since 1999. But the moment that might actually make a difference between death and survival is that final patient:doctor interaction.
Marion Brown, remarkable person and campaigner, pointed me to a significant new resource from The Ollie Foundation – ‘My Prescription Safe Plan’ – a document intended to be completed by patient and prescriber together, ensuring that the potential risks and feelings of suicidality are understood by both patients and those writing the scrips.
https://theolliefoundation.org/wp-content/uploads/2024/09/My-Prescription-Safe-Plan-%E2%80%93-email-copy-%E2%80%93-September-2024.pdf
You’ve probably thought and said this 100s of times – but why can’t we go much further? Informed consent is after all both a legal and ethical obligation. For any drug that has suicidality as a known risk – Doxycyline being one you mentioned (news of the awful death of Alana Cutland was unforgettably vivid) – shouldn’t prescribers give patients a card like an organ donor one – that names the drug and gives medical advice on how to treat iatrogenic suicidality. DO NOT UNDER ANY CIRCUMSTANCES DOUBLE THE DOSE, YOUR PATIENT IS SUFFERING FROM BEING POISONED (BY YOU) – NOT A PSYCHIATRIC PROBLEM.
I’m sure you could write some serious medical advice.
David Healy says
H
Thanks for this. We need a conversation among people like you who grasp the problems and lawyers etc to grapple with this. Part of the problem is that 20 years ago I told a House of Commons Health Select Committee that the close to the entire medical literature for on-patent drugs is ghostwritten – overhyping the benefits and hiding the harms. We now know fraudulently so with companies charged with fraud.
But Richard Horton from the Lancet and Iain Chalmers from Cochrane – both later knights – weighed in and said oh not this is a problem.
This is not just a suicide issue. The government – Wes Streeting – is now saying the costs and demands are escalating so much we risk having a bloated NHS carrying a small country on its back This is an inevitable consequence of allowing the medical literature that counts to be so false
So there is a broader front we can fight on than just the question of suicide – the suicide issue is closely linked to the economic collapse of the NHS and many Western economies – putting one right might help solve the other
David
annie says
Reimagining –
Sir Keir Starmer warns that the NHS must ‘reform or die’ as he sets out plans for the ‘biggest reimagining’ of the service since its birth.
‘Die’ is now in the lexicon. When a Government is talking quite blandly about ‘black-holes’ and 4,000 lives are in the balance, these 4,000 people have no comeback. This is quite terrifyingly sinister and these 4,000 people are quite likely wondering what they have done to deserve this.
Talked about as though as though they are disposables. One could weep for their state of mind.
Would they let all the psychiatric patients out of their hospitals because they are full?
The Mental Health field in today’s world is so gigantic, and all encompassing, it could surprise no-one.
The figures are sobering, and not just in children and youth. All aboard the gravy-train when you are the odd-one-out not to be swallowing pills.
Moral failure is very much alive.
I didn’t expect in a million years the shock I felt at the ‘iatrogenic insanity’ of the recent brutal deaths of Romain and Dexter. I really had thought we had passed that point of no-return that children could be disposed of so easily with no recourse. None.
Pharma has won the Battle of the Bilge; the ghost-writing paid off, the fines were paid, no conscience unfurled, swallow it and be damned.
The delinquents are out in force; prowling and meowing, the force is with us.
We know Ollie, Natalie, Stephen and all the Others, like the back of our hand. All the details exposed in lurid photographic frames.
All Trust is Gone. Everywhere.
‘What keeps us going is the strength and courage of many of you who do take up the challenge to force the system to stop and look at and listen to you. It is you who are bringing Good out of Evil that are making a difference and if we can manage to continue doing this, at some point the system might be forced to change.’
The current ‘battering ram’, I am convinced is not sustainable. A cruel and heartless world is not what anyone wants. I think the current ‘road to nowhere’ might help us in the long run when it becomes more and more obvious what is going on.
There has to come about a point when the people rise from the ashes…