The last post The Greatest Failure of What Used to be called Medicine provoked a lot of comment – or at least the photographic images in it did. There was little discussion about the content of the post and what to do about the spectre of bureaucrats in the guideline and the regulatory apparatus hanging together when it comes to something like children hanging after antidepressants.
Gillian Anderson and others asked if its valid to use images like this? Will it do “the cause” more harm than good – put off the people who need to listen?
In 1963 Thích Quảng Đức, a Buddhist monk, set himself on fire in Vietnam in protest against the South Vietnamese Government, soon to be supported in spades by the US Government. JFK said “no news picture in history has generated as much emotion around the world as that one”.
The Americans didn’t listen. It took over a decade to sort things out.
In 1969, Jan Palach set himself on fire in Prague in protest against the Soviet occupation.
Ireland, the home of Lynching, is also the home of the Hunger Strike, and the Boycott – non-violent ways to bring about change – Gandhi, Martin Luther King and others came later. These moves often expose the violence in the system – hunger strikers are let die, the boycotters were shipped off to Australia, Gandhi and King were assassinated.
There is unquestionably something honorable about dying or suffering yourself for a cause.
The people of Prague turned out en masse for Palach’s funeral and his death played a part in the later formation of Charter 77. There is unquestionably something honorable – but does it work.
Gillian and Maria Bradshaw raise points about re-traumatization. Showing a photograph of a hanging child or a lynching will disturb people and this is an injury inflicted on them by the person showing the photograph – me in this case.
I don’t buy this. The violence, trauma, disturbance is real but it comes from the system. There is nothing more that the system would like but for everyone who has lost a loved one to a medical treatment to shut up. They would love nothing more than to help generate the impression that someone who tries to raise concerns is an enemy of the people.
If a photograph of a hanging child traumatises some, well we probably should ensure we don’t talk about these things either. Perhaps there should be trigger warnings on blog posts. This is reverse Stockholm syndrome. In Stockholm syndrome, people held captive by their hostage taker come out singing their sympathy for him.
In Saigon syndrome (we need a good name for this), anyone who tries to rescue people from a prison gets seen as an enemy of the people. The doctors and clinical psychologists who come along to shelter you from something disturbing get seen as the White Knights.
These posts will disturb, unsettle and anger some? Should they not happen?
I and others have gone down and will continue to go down a non-violent route. This is what RxISK is all about.
One of RxISK’s main goals was to tackle the violence of the system by getting people not just to file RxISK reports but to take them to their doctors . Among the most astonishing things this has shown is that people are too plain scared to do so. They sense their doctors will get nasty. And many doctors probably will get nasty, because doctors sense the system will get nasty with them if they don’t squash out dissent.
It is clear that pretty well everyone is being traumatised the whole time. The momentary disturbance triggered by seeing a photograph hints at the pressure everyone is under.
This pressure is not going to go away unless we tackle it. Part of the difficulty in tackling it is alerting people to the fact that their problems don’t come from rogue doctors who make mistakes but from good doctors who keep to guidelines – based on junk. There are few better symbols of the violence of the system than the craven attitude of bodies like NICE to the refusal of pharma to hand over the data.
Its not just NICE who are part of the problem – its non-governmental bodies (NGOs) like Medicins sans Frontiers (MSF), (Doctors without Borders), George Soros’ Open Society, Health Action International (HAI), the American Civil Liberties Union (ACLU) and others involved in Access to Medicines campaigns who will fight the easy fight about the cost of drugs and not the fight about access to the data that turns a chemical into a medicine.
Its not just regulators, and guideline bodies and NGOs who are part of the problem, its everyone who turns to complementary medicine or antipsychiatry or who rejects the medical model one way or the other.
Its professional bodies like clinical psychologists who scream blue murder about trauma but never help a patient disabled by the side effects of drugs to stand up to the doctor who has put them on the drugs.
The system depends on everyone to quietly get on the trains that turn up to take us East. This is a hazard of bureaucracy that was put on our radar by Max Weber a century ago. There was a “there there now Max” response at the time and later outrage at the suggestion he might have been predicting the Holocaust. We are nowhere nearer getting to grips with this than we were a century ago.
Following the death of Jan Palach, Vaclav Havel and others set up Charter 77 to respond as they saw it to the bureaucratic dictatorship in which people in Eastern Europe found themselves. Previous dictatorships had involved a minority and were temporary but the Soviet system ruled in the name of the majority and looked pretty permanent. Havel didn’t want a turn to the West which he saw as pretty capable of going just the same way.
As Havel put it:
“A specter is haunting Eastern Europe, the specter of dissent…
You do not become a ‘dissident’ just because you decide one day to take up this most unusual career. You are thrown into it by your personal sense of responsibility, combined with a complex set of external circumstances. You are cast out of the existing structures and placed in a position of conflict with them. It begins as an attempt to do your work well and ends with being branded an enemy of society. … The dissident does not operate in the realm of genuine power. He is not seeking power. He has no desire for office and does not gather votes. He does not attempt to charm the public. He offers nothing and promises nothing. He can offer, if anything, only his own skin—and he offers it solely because he has no other way of affirming the truth he stands for. His actions simply articulate his dignity as a citizen, regardless of the cost.
It’s easy to resonate to these nice words now that we know Havel won – largely by accident. It took a shipworker in Poland to galvanise things.
Feeling a warm glow in response to these words is rather like the warm glow that half the population of Dublin had when later claiming they were in the General Post Office (a small building) at the time of the Easter Rising when in fact most Dubliners were hostile to the revolutionaries at the time. The Easter Rising was a curious mix of violence and self-sacrifice – almost like committing suicide by aiming what appears to be a gun at the police.
We need more than the stirring words in Havel’s quote. Written before he won, the key insight is that you become an enemy of the people – even the people who have lost loved ones and been traumatised by the system. Even for the Jews in 1942 or 43, those who took to the woods rather than getting on the trains were enemies putting everyone else’s life at risk.
If you win, the stone the builders rejected becomes the cornerstone. If you don’t, the people call for crucifixion – pretty well force the powers that be down this route.Share this:
Copyright © Data Based Medicine Americas Ltd.
a person who dissents.
synonyms: dissident · dissentient · objector · protester · disputant · rejectionist · rebel · revolutionary · renegade · maverick · independent · apostate · heretic · bad boy
a member of a non-established Church; a Nonconformist.
synonyms: Nonconformist · Protestant · freethinker · recusant · Puritan · Baptist · Methodist · Quaker · Calvinist · Lutheran · Mennonite · Anabaptist
Are we ‘bad boys’ to be commenting on this blog which has travailed over six years ..
Do we follow this blog because we agree with everything that is said or do we follow this blog because no one else puts it over in the way that it is put over..
Maverick and Radical have been dished out liberally which basically says that any one who thinks deeply and with a conscience is some one who is completely on a different wavelength to anybody else and who is probably a ‘bad boy’ and most people are ruffled and rattled by it
I can only imagine what it must be like to find a body hanging or a body drowned or a body for whatever reason no longer with blood coursing through the veins but clearly there are too many responsible and these people are not called maverick or radical ..
This is because they all toe the party line and the line gets longer and longer and longer and the voices get louder and louder and louder and, yet, all based on a false notion, a false power base, a system where people are rewarded for doing nothing at all – how do we respect the data or those who invent the data or those who have never seen the data ..
All I see, out there, are careerists making too much of a reputation for themselves without handing out a branch of intellectual curiosity to those who were felled and buried ..
Sorry David, I can’t agree with your view that the last post didn’t generate much discussion about youngsters’ suicide, in comparison to comments about your use of a photograph of hanging, lynching, in the USA. Out of a total of 62 comments, it seemed to me that most were about the main subject you’d posted. I had thought the discussion was really alive and focussed.
These young suicides ARE shocking. In my final comment there I asked, “What are we to do?” I wrote about my son’s body, lying cold in his black body bag, ‘smiling’ as we identified him for the police. I thought that might show how really shocking the experience is, for all concerned. I could write about all the other young people’s suicides I know about in graphic detail, if I had their next of kin’s permissions to do so. It is ALL shocking, ghastly, mind blowing. Many parents had no or little idea it was coming. Some of us did though. We did. We sat and pleaded with our own GP to wake up in time and help us save our son. She wouldn’t. We wanted her to ring his GP, and pass on the information that we knew he’d do it very soon. She said she couldn’t. No doubt, guidelines again. She said he must tell his GP himself. He did. It was hard for him because he socialised with his own GP, but he did. We asked him what she said. She apparently looked awkwardly away and said “you don’t really mean that Olly…”
Another parent wrote on your post that it’s difficult for us parents, trying to help, because the person themselves is likely to be confused and not in the best state of mind to make judgements anyway, and we are thus in a very difficult position. They mentioned ‘guidelines’. You said this was wrong, guidelines shouldn’t be adhered to. Doctors should have backbone. Well, sure as hell, we all agree with that, but how DO we get a steel rod up their backs? I’m seeing mine today. I’m going to ask that Olly’s dad and I can go into the Practice meeting and talk them all (8 or 9 of them plus nurses) through our experience of losing our son and remind them in detail of the part they played in it, from attitude to us all, to drug prescribing, to failure to listen, to hiding behind ridiculous guidelines. Watch this space. I bet she’ll be reluctant or say they haven’t got time for that. I’ll report back.
Let me tell you one story of a suicide which should have surely woken up those at the top. It was well documented in the film ‘Dying for Clear Skin’ so I think it’s ok to relate it here. A young man was just qualified in medicine in Manchester. He had always wanted to be a doctor since age 4, ‘to help people.’ He was sunny natured, easy going, very popular, had done brilliantly all through his medical training, specialising in cardiology. He was the first member of his family to get to Uni. He was looking forward to marriage, had a few spots on his back, just wanted to clear them, so was offered some RoAccutane. Almost immediately he got ‘dark thoughts’ and told his parents who lived down in Devon. Almost immediately his mood seemed distant towards family and girlfriend. When his dad expressed concern he said not to worry because he knew these pills made you depressed and at least by experiencing these feelings, he’d know what his own patients would be feeling like if they took this medication so it was a good learning process for him as a doctor.
He was dead, by hanging, within a month. He had just been to see his GP as the dark mood was concerning him somewhat and he’d been given a packet of antidepressants to zap it, (according to ‘Guidelines’j but he hadn’t even opened the packet. He was dead by hanging within a few days. He spoke on the phone to his dad the night before. Reassuring him that he mustn’t worry, he’d be ok. The parents drove up to Manchester to see him first thing next morning. Too late. Hanged in his wardrobe, in his room in a house he shared with other students who knew him well and liked him enormously. Shock, horror, disbelief all around.
One might think this was an open and shut case, proving exactly what RoAccutane could do. His parents, back in 2004, thought that. Everyone around them who’d known their son well, thought that. But despite going to their very supportive Lib Dem MP, and the MHRA (as it then was), the ground was pulled away under them by their GP who in their opinion, skewed the truth around by saying he had died because he had been depressed, and when his case was referred to a high authority on suicide in Manchester, Prof Louis Appleby, the fallacy continued, and the drug was not blamed. So they made a film, with other bereaved parents, and that film led to lots of others of us joining in force to get a parliamentary debate, and meetings, and a commissioned Government report, by the MHRA, which was a whitewash, and we’ve all written and protested and leafletted and I’ve blogged, without ceasing, but the suicides go on and the prescriptions have risen by 680%. So, now what?
Some people assume, when they know others that took this drug successfully, (apparently) that at the first sign of trouble so long as you trot along to the GP and report it, they can reverse any problem with it. They can’t. It’s all down to luck. If it messes you up, you are permanently stuffed. For life. We try to get people to awake up and see this. They don’t. It’s a case of ‘I’m all right Jack, my friend was ok on it, the fault must lie with you, don’t ban it.’ Same goes for suicides on SSRIs, Sertraline in particular. “They must have had other issues we did t know about, it can’t be the drug…”
So, where does this leave us? Like I asked before, WHAT CAN WE DO? How DO we get big cheeses like Prof Louis Appleby, who make policy and ‘guidelines’, to see what is really happening to cause suicide and turn turtle? And shout about it? Whatever we feel about the shortcomings of Chris van Tullekan’s BBC1 programme on antidepressants for children, at least he got a bit of the word out there. Some people will now be querying the rightness of giving this stuff to kids.
I am sorry DH doesn’t feel the discussion related enough to his last post and got sidelined by the lynching photo and ballad. I would love him to tell us clearly exactly what HE feels we CAN do, what steps we can take, to change the situation regarding suicides from use of antidepressants and other mind altering psychiatric prescribed drugs. I am feeling a great sense of frustration right now….
Thank you David for another shocking photo of a man horribly dying as a protest at violence and subjugation of others. Who knows what he was thinking as he died – he will never know how much his action changed history – or not . These acts of love are replicated less dramatically across the world by people who won’t shut up whatever route they take – including blogging. What was shocking was the response by a few who thought they could almost order the previous image to be taken down – including that those in their networks would be advised to boycott the blog. Shades of chairman mao and other even un named minor tyrants – how easily that lesson is learned. This is another lesson about abuses by minor groups who collude with power -we must take it seriously as some organisations are funded by the hierarchies in UK and elsewhere so although it was annoying to see the comments on the blog it is very useful to read them -they needs to be there to be challenged and to ‘allow’ dissent from our dissent..
What is quite shocking is the puerile junk on the college of psychiatrists web site – empty messages from the president regarding trips around the world with little content about what they achieved – and an ‘amusing’ reference – to her cat. Compare that with the passion and gruelling work put in by activists attempting to change a corrupt system. The thing is people with mental health issues can be threatened by incarceration and forcible drugging – people have died in psychiatric prisons/hospitals in Uk when they insist on challenging ‘the system’ and can have it put down as mental illness – on files. One GP has suggested that if there is a suspicion that someone has a ‘personality disorder’ they should put a marker on file – without informing the person. People hide from those with unacceptable bullying levels of power over their lives , people speak anonymously out of fear on blogs. People are told to ‘talk to their doctors’ if concerned -before they realise the collusion makes their position even worse. All this kind of thing is being documented on David’s blog – the uninformed who have not been exposed to these realities need to know what happens in a so called democracy.
There is a pre Stockholm syndrome experienced – an intuition that things are not going well, that the relationship is not respectful or trusted as being in best interest for whatever reason – At that stage information is lacking, there is no knowledge of where to go for support from others who have experienced the same, no skill in dealing with a shocking realisation that the relationship is not as expected, it can lead to a falling in with something which will be ultimately harmful . How many people will admit – ‘I am/was afraid of the doctor’ ? It is shameful . Can’t help noticing that most of the people who have died very publicly are men. Women are usually dragged out of sight where they also die horrible deaths.
David , I said I would not comment again but I would like the opportunity to correct something that you say “Gillian Anderson and others asked if its valid to use images like this? Will it do “the cause” more harm than good – put off the people who need to listen?”
No I didn’t say that or make that argument . I said that using false analogies make ones case less credible . Incidentally I am not called Gillian Anderson .
Of course Havel, the son of a Czech industrialist, would also have been alluding somewhat ironically to the original spectre haunting Europe of Communism (Marx & Engels, The Communist Manifesto 1848), so it is above a meditation on the arbitrariness of power – he’s partly saying they have got power now and what have they done with it? What we might learn from this is that main purpose of power for the class that owns it is to maintain social and institutional domination at all costs. I have often reflected that three Prime Ministers (Major, Blair and Cameron) had families affected by autism but it was belonging to a class and upholding its belief infrastructure that mattered more in the end – also they probably wouldn’t have had a clue what to do if they abandoned the system. The possibility of having any kind of radical difference from the system is gradually eradicated and we see ourselves becoming as politically rigid as the old Eastern bloc. And power is as brutal as it ever was though it has a new disguise. But perhaps those in power are those least able to change anything – the burden of Wagner’s Ring cycle, also conceived in 1848.
This guy is a dream-boat ..
Dr. Peter Gordon makes films, lots of them, he lives in the Bridge of Allan
Dr. Peter Gordon also takes Seroxat/Paroxetine, he has been hospitalised
We can get conflicting information overload and a Scottish doctor, with such an arty beat produces his little films, almost daily.
I have watched all his films and you know what, I bet that old man, Mickey Nardo, would have loved him as despite Mickey having the greatest sense of humour on the planet, he would have recognised how carefully and diligently someone in rural Scotland meets someone in rural Georgia and someone in ‘chatty’ London ..
I wouldn’t go as far as to say it would be a meeting of the minds, Mickey was a one-off, but I would say that he would have enjoyed these little films commenting on ‘how it goes’ as a doctor in the NHS/US ..
and the comments from lots of us ..
I also remember where I was when Mickey’s death was announced and he could have made such a lot of all this. He would probably have sat in his rocking chair, on his porch, lit another cigarette, thought for a while, and then decide to get on to his faithful computer …
My daughter in Canada, when we meet up, often remarks “mum I had a dream” and I always responded “I had a dream…” and so it was …
Thank you for not bowing to a few readers’ self-serving demands that you abide by their directions to remove images they chose to find offensive.
I previously stated I was disturbed to read mental health advocates proudly declare they won’t share info that will save children’s lives. More importantly, I was shocked that some who commented were more interested in publicly sharing their self-perceived wounds than in discussing the real issues at hand: 1) SSRI deaths are preventable. 2) SSRI deaths are violent. 3) We must do all we can to work together to educate and inform the public to save the lives of the innocent.
I half expect a backlash re. my comments here by those who might falsely state I don’t know how it feels to find the body of a dead child violently destroyed. Trust me, dear readers, I do. And as a humanist, it is that very personal image that reminds me daily of my duty to do all I can to help others avoid such tragic loss. If I choose to be offended and/or somehow harmed by an image or the written word, I can always also choose to not look/read. But to put my own feelings ahead of furthering effective discussion of public health and safety is a greater offense I hope I never commit.
I will be faithful to the truth regardless if it harms me. I don’t want reality sugarcoated for me anymore than I would sugarcoat the bitter truth for others. Now, as Natalie would say, “onward and upward.” Let’s hope we can all focus on conversations about how to AVOID prescribed hangings, shall we?
I agree Kristina – we need to keep focused on actions to bring about change. If people don’t agree with the way it is being carried ‘on-wards and up-wards’ the option is not to slam into David and others who have been working relentlessly for years but to form other ways of tackling the issues themselves- without piggy backing off others whilst undermining at the same time.. There can be alternative ways perhaps but they haven’t worked so far .So much work has been done on this blog which benefits countless others – it hasn’t happened overnight. The degree of hostility has ugly undertones eg use of ‘vermin’ analogy even if backtracked in the next sentence , and once again an assumption that David in this case needs to be re educated and led down the path of greater understanding by those who know better.
It is sad that you half expect ‘a backlash’ – I had the same thought. But also a lot more thoughts of those who have died and the grief which never ends.
Kristina, for some two years, myself and my family have been deeply saddened by your experiences and your powerful writing. Thank you.
Those who have had their children maimed and killed by the cavalier and ignorant prescribing of psychiatric drugs are compelled by the scale of their loss to strive to prevent such devastation in others.
The intensity of the suffering we have observed, endured and the cruel memories that haunt us in perpetuity, is/are amplified by the refusal of those responsible to have the professionalism, humility and courage to discuss, acknowledge and learn from us.
This is the same for those of us with medical qualifications as for any other patient or family background.
I found the Images in “The Greatest Failure That Used To Be Called Medicine” almost unbearable to look at, but profoundly important and absolutely necessary.
I would go further and advocate that such images are compelled to be carried on every packet of SSRIs/SNRIs and other prescription drugs that kill our children (be they adult or child).
They should also be compulsory display material on the pharmaceutical stands at all Psychiatric and General Practice conferences and training meetings .
This “shock and awe” use of distressing images caused concern when applied to the all-powerful tobacco industry.
Cigarette packets were soon appropriately conveying images of their terrible lethal diseases.
In Canada – I believe 75% of each packet.
Some of the messages were addiction warnings. (Also – highly appropriate for psychotropic prescription drug packaging).
You are inarguably correct:
“SSRI deaths are preventable”. “SSRI deaths are violent” – yet my profession fails to prevent them.
They appear to be happening with relentless increase in frequency, but the Inquest process fails to collect and analyse the detailed prescription drug history which is critical to establish a valid definition of cause of death.
It is my profession whose akathisia ignorance, ADR complacency and indoctrinated “following of guidelines” is failing to prevent these awful, violent, avoidable deaths.
Every SSRI pill packet should therefore carry an AKATHISIA ALERT.
The akathisia risk should also be displayed be in bold at the top of the Patient Information Leaflet.
If the Tobacco Industry can be compelled, might the all powerful Pharmaceutical Industry at least be considered in such public health terms:
ie – Mandatory Prevention of Morbidity and Mortality?
Meanwhile – some who comment do not find these images acceptable.
If one avoidable death is prevented, if one child and their family are spared this agony, then surely that alone compels us to accept that they are necessary?
I agree with D.H. that guidelines are a brilliantly successful marketing phenomenon.
They compel doctors to injure and kill patients.
I believe that they corrupt the ethics and integrity of clinical practice.
“Guidelines” are immensely difficult to contest.
I have refused to follow prescribing guidelines which I believe left patients at risk of progressive disease.
It seems probable that I was monitored, reported and suffered detriment professionally for doing so.
It is profoundly destructive to one’s medical career, damaging to personal and family health, and extremely brave to contest clinical, diagnostic and therapeutic guidelines.
Most practitioners appear to lack such a sense of duty to patients, whilst affording duty to follow the professional heard.
Whilst we debate whether these images were justified, might we also reflect on the decades of sincere medical courage, self sacrifice and achievement which have lead to their appearance on this blog?
Tim, I agree in part with what you say as I have suggested before that images should be put on pill packets – it is so logical and could be done. The fact that they are on cigarette packages shows it can be done – It would alert people also to actually read the information leaflets and take them seriously. The Institute of Psychiatry told me years ago that they accepted money, at the time, from the tobacco industry, BAT, knowing that tobacco was causing deaths . The argument was made on grounds of the greater good ie research was being funded so some lives lost was acceptable. The same is happening with prescription drugsand the drugs industry.
But where I will always disagree is that guidelines have to be followed – All medics do not allow the people on high to exercise that degree of power to corrupt them. No guideline on earth can compel a GP or other medic to prescribe anything which may cause harm, injure and kill.They will not take advantage of others’ lack of knowledge even using the excuse of lack of time. Many will but There are still many decent medics who will not do so and they still keep on practicing , not everyone has career prospects at the top of their agenda at the expense of why they go into medicine to start with. thankfully .
It is surprising though that although GPs . psychiatrists., therapists and others have formed support groups in other areas , some formal some in private, that more do not speak out even anonymously. I do know one psychiatrist who has spoken out obliquely in a journal not usually read by the public, but wouldn’t publish in a way which would get the message of how his/her relative died, probably as a result of the ‘wrong’ drug, to the public or so that those who consult him/her would know. It’s a private matter yes but also It is still somehow shameful to admit to becoming one of the harmed ,as well as to allow criticism outside the club. If once a critical number did start to activate others might tend to follow. It would help the cause enormously if health workers who realise what is happening would speak out .Blogging does provide a safety net.
I think you have totally missed the point about the comparison to lynching and Klan terror. At bottom, this was NOT an issue about the lynching picture being “too intense,” “too upsetting,” or “too gruesome.” And it certainly was not about being “afraid” to “make waves” by using words and pictures that might be “too extreme.” No, it’s about the political implications of comparing antidepressant harm to lynching and Jim Crow terror. Even if “antidepressant harm” includes the deaths of thousands of people, and the cold indifference of the system to those deaths, we still have to face it: there’s a problem.
In earlier, more mellow political times, making this comparison might have led others to think you did not really understand the seriousness of the events you were using as metaphors. In the current climate, you run a real risk of being mistaken for one of those people who think Jim Crow and Klan terror were GOOD. Or at least one of those who think it was not nearly as bad as advertised … and that if black people got themselves kicked around some, it must have been largely their own fault.
We might think that is very unfair, and maybe it is. But it would be downright stupid to pretend those forces are not out there, or think that no one could be dumb enough to lump us together. And I have to say that your remarks about the Holocaust make the whole possibility a lot less remote to me.
I was kind of shocked when you said last week that the Holocaust was due at least as much to “Jewish brutality” as to “Aryan brutality.” I decided to try and ignore it – you had just let yourself get carried away with a metaphor, I thought. Certainly I don’t live in a world of plastic saints and martyrs. I know there was plenty of denial going around, at least in Germany and Austria in the mid-1930’s. There were lots of political leaders who told folks not to worry: terrible things happen in backward countries like Italy and Spain, but it can’t happen here! By no means were they limited to Jews – and by no means were they all cowards who simply wanted to “avoid making waves.” Those under the leadership of the Communist Party were convinced by their leaders that if Hitler took power, it would only hasten the revolution. Some who could have fled for other countries chose to stay for the fight. Fools? Maybe. Probably. Cowards? No.
And while all those leaders might justifiably be charged with leaving their people undefended, there’s a real difference between failing to defend your people against the bayonets, and bayoneting them yourself. (And yes, I know about the Capos in the concentration camps – there have been people like that in every prison and concentration camp in history. But Jews were not driven into those boxcars by Jewish bayonets between their shoulder blades.) And while there may be Jews with something to answer for, don’t forget the great democracies of the world that turned away shiploads of Jewish refugees and sent them back to Germany. Or the many non-Jewish Germans who participated in the mass murder when they had far more “choice” to resist than did the Jews.
It’s tempting, at times of great frustration, to reduce everything to a question of courage vs. cowardice. But it’s an illusion, and a dangerous one. To imagine that what European Jews faced was a “choice” to either “take to the woods” or “get on the train” is a childish fantasy from a Quentin Tarantino film. (“That would never have happened to me, see, because I would have fought back!”) A whole lot of people did “take to the woods,” and a whole lot of people died there. Many of them, being more realistic than Quentin Tarantino, knew damn well their dash to the woods was a form of suicide, but figured death was inevitable and preferred to go down fighting. A whole lot more had no chance to run. Others resolved to do whatever they could to survive a few more days until they got their chance. Most of them didn’t make it. Some of them did.
It would be very inspiring to imagine that most of those who survived the Holocaust “took to the woods,” but it would be wrong. Do I admire them? Sure, why not? But I cannot look in the eyes of the survivors and tell them the whole thing would never have happened if only they’d had the “balls” to resist. I sure as hell could not tell them that this was done to them by other Jews “at least as much as the Nazis,” or that it was a consequence of their own “choices.”
The only people who could, I think, would be the Nazis themselves. That’s where this “metaphor” takes us, if you really get carried away with it. Blacks chose to put up with slavery, Jews brought the Holocaust on themselves – and those of us who have suffered harm from drugs are not the most deserving characters either, it turns out. It seems you believe we would have a fighting chance if only we were brave enough to take a RxISK Report to our doctors – but allegedly we are all just too “afraid” to do so.
The fact that lots and lots of us have done just that, and have described to you at length and in great detail exactly what happened (not much!) never seems to sink in. You just nod – and then, six months later, start moaning once again about how you have begged and pleaded for someone to do this brave deed, but not one of us has had the courage. It utterly blows my mind. I think it would be better to ask yourself if this is really the one and only true road to victory, or just another tactic that is not panning out too well at this point in time. To actually listen to those who have tried it, and believe what they tell you. And when others say, “That won’t do any good,” to ask whether they might be, not cowards, but maybe, just maybe, at least partly right.
It’s either that, or abandon the lot of us as not worth fighting for, if we won’t fight for ourselves. Maybe even … vermin?
Hell, I know you don’t believe that. But it seems you are piling more and more people onto the trash heap as cowards. People who “resort to alternative medicine.” People who “abandon the medical model”, for Christ’s sake! By what right do you decide that those who take these paths do so simply because they don’t have the “courage” to take exactly the same path as yourself? Many of them have fought hard, for years, and paid as high a price as any of us. Lost careers. Lost family. Gotten locked up. Some of them have probably told themselves that Healy would be on their team, if only he had the “courage”!
Maybe their ideas about how to fight are wrong, even stupid, but that just means we got some debating to do. Gotta roll up our sleeves and do it, not just proclaim that the “real” reason they don’t agree is cowardice. Despair can feel very radical, but refusing to give up is the real radical course. And when you decide that only a small minority of the human race really has the human dignity needed to fight back, what do you decide about the rest of us? The answers can get very ugly, before you even realize it. Please, take a deep breath and think about some of the things you are saying.
Johanne, you’ve had the guts to write clearly what I’ve been tinkering round the edges of, in my extreme current frustration.
All this historical academic reference to past atrocities is of course mind-stretching and the analogies are cleverly drawn, but whilst we filter and absorb all this, we are not actually getting to grips with the issue. I guess I feel like Sally Macgregor did when she said that all the posts on study 329 were not engaging the audience because they were getting bogged down in the intricacies of it and when she recommended new readers to the Blog, they were not that interested.
If we were Uni students and writing a thesis on these analogies of destruction by some towards others, it would be great.
But I want to scream, tell me NOW what to DO. I can see children and young people dying and suffering from these prescribed medications, SSRIs and anti-psychotics and RoAccutane isotretinoin, because we collate information, we have a Helpline, parents call us regularly in fear for their loved ones dying. Yes, OF COURSE it’s terrible what happened to those lynched in the USA and gassed in the Holocaust, utterly dreadful, but we are dealing with a new horror now, it’s different, and we need a new way to deal with it. I don’t want to get drawn into the past, because all the time I do that, I’m not addressing the NOW.
I feel we need a really good feature film, gripping and honest, not filtered through those who fear being sued, like the BBC, and we need books, like Kristina Gehkri’s, which have a far reaching effect, telling honestly what is going on. This is why I feel, contrary to an opinion earlier expressed by David, those that can should write, hold nothing back, self publish, tell the truth and show how shocking are all these deaths and semi-deaths, – by which I mean drug damage which renders the individual branded as mentally ill and ruins their ongoing life and prospects, with damning words by doctors in their Notes which can never be erased, so they can never be accepted as the former REAL selves they were before they were subjected to so-called mental health treatment, which is simply enforced lazily prescribed drugging.
We have a Helpline, and the accounts we hear from terrified parents, about either young who have died, or who are in danger of doing so, would horrify any thinking person. These people are desperate. They are not anti psychiatry, they reach out to it for help, and it doesn’t work. So yes, they try alternate medicine and get support from groups of similar others, and more often than not, it DOES work. They know they are not alone.
I guess my frustration is because I just do not know what more to do. I feel publicity is the only way to go, but it has to be publicity FOR the people BY the people. Free speech. Freedom to tell the truth. I am a simple soul. I want AKATHISIA blazoned out in the forefront of all this, as, as Annie has wisely said, AKATHISIA is the killer. I want a straightforward post on AKATHISIA, I want a campaign, I want attention purely and simply focussed on this, and although all the other academic historical stuff is interestingly and informatively written, I just think it’s muddying the water right now.
So, if I was allocating the RxISK Prize money, it would go on, first of all, a wonderful low budget feature documentary film, and on AKATHISIA tee shirts like Tim suggests on the RxISK blog.
I, personally, would not give pharmaceutical companies and royal colleges and nice and all those following the pied piper any more ammunition to shoot us in the foot ..
I didn’t take a Rxisk Report along because I had already been shot down in flames, repeatedly, and it was so hostile from people who mucked about with my life for the years they mucked about with Seroxat.
This was a village and they really pushed me too far and to be frank the reverberations from the GP picking up the phone to call her Scottish Union when put under questioning from my Formal Complaint by the Practise Manageress and then for the Boss to telephone me from Canada and quite clearly warn me off was outrageous .. not only that but how many doctors invite their patient and her child for a cosy week on an Island, whilst watching her sipping the Paroxetine liquid and with the Panorama videos I had made sitting on her bookshelf or me somehow in the position of walking her mad labradors .. the whole situation was mental!
So, I’m with David and Kristina, here.
We absolutely have to stop the hangings and deaths of children and adults and do so in a grown up way and ranting about politics from the point of view of an American is never going to do that ..
Freedom of speech is wonderful until it interferes with the goals we have set ourselves .. and the SSRI deaths are always extremely violent full of unimaginable horror ..
Kristina and Natalie knew that only too well and Kristina deals with it in a way few mothers would be able to, and this is the real story that needs spreading..
Wendy Burn: Being bipolar can be “awesome” . . . but only if you get the right support
June 7, 2018
I’m hopeful that the shroud of shame around severe mental illness is finally beginning to lift, but what is the use if we are then unable to offer treatment?
The Shroud of Shame sits with those who dish it out and the ‘treatment’ is under considerable pressure to be ‘ratified’ ..
Thank you for your insight, Annie. I always appreciate reading your thoughts. My family’s prescribed tragedy is no greater nor lesser than thousands of others.That Natalie and I are able to share our lived experience is a gift I try to honor and cherish. Her life was priceless to me yet her life was of no more importance than any other child’s life. Perhaps such realization is sometimes the emotional fuel that keeps me going. I can’t actively care for my daughter anymore given she’s dead. But I can actively care about other people’s daughters and work to increase the odds that they might live long, healthy lives.
One more thing I meant to say, in response to Johanne,
Why do people go to their doctors? They go because they are unwell. They don’t go to pass the time of day because they’ve got nothing better to do. They are unwell, they need help, and they are therefore vulnerable. If they make the doctor mad with them, or even twitchy, ( mine was yesterday), they know they will not get empathy and, more importantly they may not get accurate and effective help with their medical problem, which is why they’ve crawled there in the first place. Therefore, we take our lives literally in our hands to proffer a RxISK report, and if we are scared it’s purely because we feel we NEED the good services of that doctor to get well. So we have to keep our eye on the most important outcome for us at that time. Survival. There is no one else ‘medical’ we can go to, when we are limping along in fear of our illness anyway. We simply do not have the energy, wit, resilience, whatever, to go in on a level playing field. Even if like me, you go in with great resolve, when stony silence and disapproval greet you, it’s hard to be brave, and what’s the point anyway, where’s it going to get you? Martyrdom is just not worth it.
It would seem that both this blog post and the previous one are both causing great distress to different people for a variety of reasons. I do not wish, for one moment to belittle those concerns or take sides in any way. I am one of the ‘lucky’ ones; I am not affected by my medications in any way that is described by different people here – I have not needed big pharma’s drugs in the way that many of you have. For that, I DO call myself lucky. Neither have I had to witness the loss of a close relative in the way that some of you have.
However, I can empathise with your losses as I am part of a family that came very close to experiencing exactly what you often describe – a death which could be avoided. I am not alone in this situation. There are others of us who will support you to the hilts in GETTING THIS MESS SORTED – if only we knew how.
My fear is that, whilst we carry on debating the rights and wrongs of history etc., we are losing valuable time when we could possibly be pushing things forwards. We are all here with one aim – to make lives better. It may be to make life better for those already suffering or it could be to prevent more and more from being damaged in the same way. Frustration sets in, naturally, when things seem to not be moving as swiftly as we’d like but let’s please get back to working as one for the good of all. If we fail to do so the battle could be lost. Let’s focus once more on making sure that each and everyone of us is doing his/her utmost to move things forwards in whatever way we can.
I so agree with all you express here Mary. We are not rubbishing any of what DH is writing, but I for one LONG for there to be a big push now PURELY FOCUSSED ON AKATHISIA. Because as Annie said, this IS the major cause of suicide, even more so in children, and if we are looking at these deaths, we need to see the cause. You could argue (wrongly usually, but reasonably) that adult suicides are caused by many factors including difficulties in handling life’s circumstances, but in kids, no, surely not? Apart from bullying, which can be a factor, what else would drive a child to die? Sexual abuse possibly. But wouldn’t their natural inbuilt self preservation instinct override most of this, wouldn’t they try to get help from a caring listening adult. It’s surely in most cases got to be the medications which zap their developing minds and cause their deaths.
Katinka Blackford Newman did a great job in opening our eyes to AKATHISIA but that was ? 2 or even 3 years ago now, and things have gone quiet on that front again now. Or perhaps I’m missing something?
BBC news report this morning that the word most used by children this year has been ‘plastic’. How amazing it would be if the most used buzz word from now on, by all of us grown ups could be AKATHISIA. Then no one would be unaware of what causes it and lives would be saved. Also the NHS drugs bill would shrink amazingly.
You could well be right about akathisia Heather but I do feel that one of the main causes of youngsters’ problems is the medicating of normal life experiences. I also feel, unfortunately, that having a ‘mental health expert’ in every school (in England) from September, if all goes to plan, will not solve the problem at all. In fact, I fear that it will only make matters worse. Teachers are already stretched for time – almost to breaking point. Having this added burden (there will be no extra staff allowance allocated you can bet) will result in yet more pen pushing and tick box filling – yet more children excluded from schools and yet more fitting the bill of ‘mental health problems’. The result of which will invariably mean more drugging of younger and younger pupils.
Yes, akathisia is dreadful – but surely a better way of going about things would be to BAN these DRUGS from being used for children. They are bad enough for adults – for children their use is HORRIFIC. Let’s push at the ’cause’ of akathisia rather than the ‘result’ of the drug use – for the sake of the next generation.
Mary, you are in one way right about this I feel. If we unpick the cause of these children’s unhappiness, in many cases leading to drug prescriptions, leading to akathisia, we can find various causes but the main one that shrieks out to me is bullying from peers, and this can start, sadly now, very young indeed. I have tried to make this point before on this post before and my words have been moderated out, maybe because this is not felt by DH to be relevant here, but I think it is. I have worked as an invited children’s author/illustrator in many many schools since 1984 and whilst sitting in with the children in class at their tables, working in a creative Workshop for the day, I overhear conversations, I see subtle cruelty and sidelining of certain kids because they don’t look good, because they are rejected for daft unaccountable reasons, and they withdraw into fear and loneliness. This is, to use DH’s words in another context, ‘an issue of modernity’. It is here, it is common, and it’s why, I guess, they are putting mental health advisers into schools. But, like you say, this brands the sufferer as ‘sick’, not the misguided little so-and-so’s who are ganging up and inflicting this, without impunity. The mental health line will be to prescribe drugs in the main part.
You have only to read the case of Felix Alexander, well documented by his mum, Lucie, to see why these youngsters could be dying. Felix went to Olly’s school. Felix suffered the same bullying about appearance and other things that Olly did, and coincidentally, at the same school. Felix threw himself under a train. DH started this whole subject on young suicide by talking of girls’ dying. I would put money on the fact that it’s mostly about appearance, even though there is no reasoned cause for it. You look different, you speak different, we don’t like you. A colleague now working on the edge of mental unwellness with people, told me recently that her children castigated her (not nastily but just stating a fact) for bringing them up to be nice. We are too soft Mum, they said. If you are nice nowadays amongst kids at school, you get hurt, because you are different.
I sincerely hope the moderator will let this through because I believe it’s terribly important. What we need in schools is the teaching of the virtues of kindness, of taking trouble to be nice to others, old fashioned manners ‘like wot we used to have.’ And discipline of the best constructive kind. An end to the admiration of arrogance and lack of responsibility. Olly knew this. Before he died we wrote and illustrated a book together for young kids on how it feels to be bullied, what it can lead to, and how to make friends and influence happy lives. I have yet to finish and publish it. And Mary, of course you are right, but these kids have to talk to someone meantime and many parents don’t sit down together to eat and discuss daily life with their kids. They are alone in their world of, sometimes bullying, social media. And depression, anxiety and fear can come from this. In my humble opinion.
Mind you, I cannot believe that bullying is any worse than when I was at school c.1957-72. The culture in five quite assorted schools was foul, and was mostly modelled and encouraged by staff – of course, there were some good, sensitive people but they were thin on the ground. But, of course, it wasn’t open to pharmaceutical exploitation in the same way.
With appreciation that some have found the post offensive or inappropriate or controversial, for me, the image (which could have stood alone) and the use of “Strange Fruit”, a poem/song written by a Jewish communist on the basis of a photograph, as a human rights protest song, the image of those strange hanging shapes which stood out in my newsfeed, or the double take, struck me.
And so struck me as apt.
Surely only absurdist vocabulary and images could possibly attempt to convey (as Abel Meeropol so hauntingly and effectively did in attempting to capture some of the visceral horror of what human beings are capable of doing to other human beings – or reducing them to) the sheer absurdity and horror of a parent discovering their own precious fruit hanging, and in a strange way, more strangely in a ‘safe’ place and – even more unfathomably – as a result of the actions and/or intentional inactions of an institution of organised adult human beings completely entrusted with that child’s well-being?
Many of these child victims equally taken off guard, probably subjected to akathisia: the known, and also less visible form of mental and physical torture.
Post 20 years of trying to create awareness, with reams of more than credible science and cases put into the public eye, and where there are surely no easy analogies to attempt to convey the complexities and extent of the problems to the disaffected (those who aren’t better educated in, or even interested in, the issues), how else – at this stage – could the invisible spectacle of the physical and mental torture of so many, and in an intertextual, increasingly image-based world, be made more visible?
Actual photographs of children like young Matt Miller as he was found? A collage of some of the victims?
Is it right, of the highest good, to cater more towards not upsetting adults whose voices can be heard and in no grave danger to their lives except to have their beliefs a bit shaken up or challenged over the urgency of saving children’s lives or if the truth is doubt?
My heart goes out to the affected families but on this issue and in light of the conditioned blindness years of pharmaceutical propaganda has caused in the disaffected, I don’t think it’s possible to go far enough to help better inform – or arm – parents.
I also think a good gripping docu series (all the rage on Netflix etc), and with their being endless gripping material even for the disaffected, charting the whole incredible story and with case studies is what’s needed. Who in the world doesn’t care what is going to happen Brendan Dasey…?
I’m a little bemused by your words ‘ more strangely, in a safe place’. I have assumed you mean what I wrote about our son’s death, which was not by hanging or any violent means that could have involved others, ie some jump in front of trains, traumatising the drivers and witnesses, some cut themselves open and bleed to death in public places or in ambulances being rushed to hospital where efforts are made to save them. He died as he lived his life, quietly and not wanting to cause a bother to anyone. He was a responsible thinking human being, from beginning to end. He quietly and efficiently drowned, well away from view of everyone, in a hidden place, having left notes in his flat telling us to call Emergency Services before heading to the location he’d chosen. It was all clearly set out for us. There was even a life jacket in the back of his car, just in case someone by chance, found and interrupted him before it was too late and tried to save him. He knew we were away in another town trying to get him an appointment with a private neuro- psychiatrist to get a scan of his head for the continuous terrible head pain he’d reported, (which after his death turned out to be pseudo tumour celebri, caused by RoAccutane, ie a swelling of his brain inside the scull). He’d been told it was his ‘anxiety’ and to learn to live with it. He was right and ‘they’ were all wrong, but then, isn’t that the usual story. Discovered too late. He was not a child, he was 32, but he’d battled intermittent AKATHISIA for 11 years since he first took the prescribed acne drug RoAccutane isotretinoin, a very slim young man of 21, with the weight and build of a 17 year old.
He was no quitter but he came to feel, after additional meds given to counter side effects of RoAccutane, —- Seroxat, Risperdol, Escilatopram,, Venlafaxine, , Sertraline, diazepam, lorazepam, Zopliclone and finally Olanzapine, (there may have been more, I’m not sure) and 26 different social worker/mental health personnel dealing with his outpatient and very briefly inpatient case in 2 years, that he was completely (his words) fucked up.
Please, to understand better see our website and Facebook page http://www.ollysfriendshipfoundation.org.uk. for another shocking image, click on RoAccutane (blue letters in text) which takes one to the page headed by a photo of many of us parents standing in the rain on an early morning, on 24.4.14, holding up pictures of our dead children (some were very young) in protest about deaths from RoAccutane outside Roche’s premises in Welwyn Garden City, Hertfordshire. Look at our faces. Look at our children. THIS is shocking indeed. And this was 4 years ago. Another one each month, according to the MHRA’s own stats, have died from use of this prescribed drug, some like Olly with additional SSRIs etc for the low mood the acne drug triggers, since then. And thousands before that. This is apparently acceptable collateral for all those who are supposedly not made ill by the drug. But because coroners can’t feed back info on drug deaths after RoAccutane use, we can’t know accurate figures. It’s all put down to assumption by those who want it kept quiet.
Anyway, to explain what you may have found strange about finding Olly ‘in a safe place’….. Olly was not mentally ill. He was at that time, rational enough to think of others before himself. He died because he didn’t want to be a puzzling nuisance any more to anyone, and because the AKATHISIA was terrible, but he knew he had drifted in and out of a mini psychosis several times before, over the 11 hellish years, and he feared its return. The others in our group, who mostly died by hanging, did it early on during or after taking the medication, and were, we feel, momentarily in one of those mini psychosis moments. But some die in a more thoughtful planned way because they’ve lasted longer, but fear a return of that mini psychosis when they are helpless. Some also die because of the unexplained sexual dysfunction they suffer. Some die because they hear voices, common with RoAccutane plus SSRIs, and think they have schizophrenia or worse.
But the worst hell of all is the conscious sensible mind struggling against relentless AKATHISIA. And that’s why I want to raise this issue above all others.
Make a difference, learn about akathisia
What is Akathisia?
Are you suffering from akathisia?
Have you or someone you know recently started, stopped or changed dosage of a medication?
What is akathisia?
Akathisia is a disorder, induced as a side effect of medications (including SSRI’s and antipsychotics), which can cause a person such intense inner restlessness that the sufferer is driven to violence and/or suicide.
According to the FDA:
Consideration should be given to changing the therapeutic regimen, including possibly discontinuing the medication in patients whose depression is persistently worse, or who are experiencing emergent suicidality or symptoms that might be precursors to worsening depression or suicidality, especially if these symptoms are severe, abrupt in onset, or were not part of the patient’s presenting symptoms.
Consideration should be given … ‘therapeutic regimen’ ?
Here’s the latest ‘therapeutic regimen’
Simon Wessely Retweeted
Rory Conn @roryconn
Final cut of @rcpsych recruitment video #ChoosePsychiatry Pleased we got some CAMHS in there! https://youtu.be/N-ADaiOZ95c
Make a difference, choose psychiatry ..
Looking back at my last post, it is kind of weird to find myself going on at length about the Holocaust and who was responsible. I didn’t mean to simply “rant about politics from the point of view of an American.” Just the opposite! My point (originally, anyway) is that being able to deploy this-or-that historical image of horror is NOT the key to our success. It may resonate powerfully with those who are already on our side, but it’s unlikely to change the minds of those who currently see us as crackpot conspiracy theorists, or just wrong.
So, being “for or against the lynching picture” is NOT some crucial Line in the Sand between those who are willing to fight, and those who are afraid to make waves. It’s a tactical question. And at least over here, I’ve noticed, the tactic can backfire on you, big-time. Maybe you hoped to shock people into debating the justice of your cause.
But instead, people forget what your cause even was, while you waste long weeks and months debating whether David Healy is a racist. Which of course he isn’t! Still, for the next several years, you will face people with only that one vague piece of “knowledge”: Healy, hm, oh yeah. Isn’t he that racist doctor dude from England?
Likewise, over the past fifty years, in the course of fights against racism, war and oppression of all kinds, I have seen many groups try to “play the Holocaust card” in order to dramatically expose the brutality they themselves are struggling against. (Over here, at least, the CCHR never stops comparing psychiatry to the Nazi death camps, complete with graphic imagery.) I never once saw it work–just the opposite. It becomes a big, distracting debate over “anti-Semitism” and “Holocaust denial” that your enemies are very happy to exploit.
I’m not saying it should be this way, I’m just saying it is. Maybe not in the UK or Ireland, but for sure in the USA. And seeing as how there are 320 million of us, and it’s the crucial market for all these drug barons, it’s not entirely irrelevant to think about how any given tactic will play in America. (The photo of the burning monk and other images of death in Vietnam are every bit as horrific–but for specific historical reasons no one sees their use as an attack on the Vietnamese, or on the humanity of Asian people. Using them may strike some folks as gruesome, but they won’t accuse you of being a racist or fascist yourself.)
So I agree with Heather, I think we should move on. Surely we should not divide the people on this page into two camps — those ready to fight, and those who would rather Go To Our Deaths Like Sheep than risk doing something “extreme.” What worried me about this blog is that it began to do just that–lumping those who disagreed on this one question, with those who feared any sort of action that might be seen as “too radical.” And further seeing anyone who thus “keeps us from effectively fighting the Enemy” of being “at least as bad as the Enemy.” Topped off with some fairly disturbing musings on other historical victims who may have “brought it all on themselves.”
It just ain’t that way. Maybe this is an old lefty’s way of putting it, but I’ll say it again: It’s a tactical question. And our movement is a “united front” of sorts, which means we don’t need a group position on the Holocaust or many other things. Does that make any sense?
What’s going on Here ..
Fiona French and Dr. Peter Gordon have corresponded, at length, with Professor Wendy Burn and to me it has shades of when Allen Frances tackled David Healy with assorted cc s ..
Fiona French @benzosarebad 3h
Replying to @recover2renew @consent_patient and 6 others
I have now reproduced all communication between myself and @wendyburn and Prof David Baldwin of @rcpsych in the interests of transparency.
Fiona French @benzosarebad 1h
Replying to @benzosarebad @recover2renew and 9 others
Dr Peter Gordon, psychiatrist, has now appended his correspondence with Prof Burn & Baldwin the comments section of my blog. It is important now that all our correspondence is in the public domain.
What’s going on Here?
Editorial Note: This arrived out of the blue. The list of those copied in makes it look like its anything but spontaneous. Simon Wessely is recently vacated president of Royal College of Psychiatrists, and one of the Trustees of the Science Media Centre. Paul Summergrad and Jeff Lieberman are former presidents of APA. JL offered views on the Holmes case. There is no indication AF has actually watched the program
“I have watched this story play out with deep misgivings. I know you meant well, but also know you went way overboard categorically declaring meds to be the causal factor in this mass murder, when there were so many other possible contributing factors and no real proof meds were among them. It reduces your credibility when you make such extreme statements and also makes it harder for people like me who are trying to curb medication excess, while encouraging its proper use (against the false claims of extremists who somehow blame all psych problems on meds). I know how much flak you have already taken and that you must feel backed into a corner. My recommendation would be that you issue further clarification on the difficulty of establishing causality and the essential benefits, as well as the considerable risks, of psych meds. To do otherwise makes you responsible for patients going off, or refusing to start, meds they may desperately need. Protecting people ffrom unneeded meds is your noble calling, but should not result in your unneceessarily scaring people off needed meds. What do you think?
Cc: Simon Wessely , Barney Carroll , Paul Summergrad , Jeffrey Lieberman , Ronald Pies
Very sorry to hear about your son’s story. My response was my thoughts on the post and on the article itself and with regards to the violent child deaths (what I can imagine so many children had to endure) and not to you or with regards to your response at all.
I very much appreciate all the comments left on this blog. I feel a tragic type of kinship to those who have, like me, buried children who died from Adverse Drug Reactions (ADRs) from ineffective drugs they never actually needed. The bottom line is that we should/must agree to support the larger issue at hand, which is the right to medical freedom of choice, drug transparency and informed consent. Without such, whether one is experiencing mild anxiety or terminal cancer, none are safe nor truly free to chart their future nor live fully their remaining days, be it impending death or possible “cure.”
I’m grateful to all those who have kindly shared their real lived experiences and prescribed tragedies (Tim, Susanne, Heather, Annie, etc.) and who have kindly listened to my own family’s lived experience/prescribed tragedy. The best we can do from here forward is to recognize that the drug companies compete against each other for product market share and profits. But when it comes to legislation and global PR, they strategically collaborate to operate a slick PR machine powered by unified force. We will never have the money the psychiatric/pharma industry has, but we do have authentic “stories” and love for our neighbors. It is the power of our personal “stories” and love for our neighbors near and far that PR and marketing money can never honestly replicate. We do need strategic communication, of this there is no doubt. But let’s also recognize the non-monetary collective power that authenticity and no conflicts of interest carries.
Some have suggested we need honest, accurate documentaries that tell the whole truth and nothing but the truth, so to speak: films that don’t have content controlled by mainstream media. I agree, we need more of such. I also want to point out that Letters from GenerationRX is one such documentary. There are also other documentaries available for viewing that expose modern-day psychiatry and government regulators for the soulless businesses they’ve become. The problem is that many people try to find reasons to justify not sharing the truth. This boggles my mind and makes me wonder how many people out there would refuse to tell their neighbor that a deadly tree is falling on his roof before first asking their neighbor what his religion is, what political party he supports, what images/references he may/may not find offensive, etc.
We can and must do better to reduce human suffering and save innocent lives.
Great respect for you Kristina, Heather, and for all those who lost children in such absurd and tragic ways who can find the bravery and strength to share your stories to try to prevent any other children or families having to endure what no child, nor family, should have to.
I believe I saw it but I’ll check out Generation X again.
On the subject, as many have suggested, of an honest and accurate docu-series which may appeal to the masses towards better educating the public, a few years ago, I contacted various production companies or producer ‘stars’ (ie. tried to); those who may have had some knowledge or experience of the issues. Also, one or two of those who had already demonstrated no fear talking about them eg. Jack Nicholson regarding his warning of the possible effects of Ambien! (I think we can safely forget Roseanne Barr).
To no avail in getting past gatekeepers or whatnot of course.
(Regardless, I was in the grip of another very severe withdrawal at the time: so not very well pitched beyond having no credibility or suitable contacts in the business. Still, cognitive impairments and struggles with language have not improved much after over 20 years exposure post an initial prescription for Seroxat so forgive me where I may not make much sense!).
I may be being naïve (again) but if a more professional summary/pitch of the whole, albeit very complicated and tragic, but ‘gripping’ story (even of itself to any viewer as a terrible chapter in the history of medicine), could be made with suggestions on how to simplify the rise of pharmaceutical company power in historical and medical context, clinical trials studies etc. graphically (as in say, ‘Cowspiracy’) to suitable producers – worth a go?
Netflix itself appears to be developing a strong leaning towards shows which expose corruption, fraud and in the health industries and which will appeal to it’s mass audience. (Personally, I’d love to hear the incredible story told from a ‘Martian’ viewpoint or in the style of ‘Wild Wild Country’ to make, essentially, what can only be described as the lunacy of the present system, and its impact, really hit home).
Without a suitable director etc, the stories of some of the affected and various experts tied in, it would be very difficult to go any Kickstarter or Indiegogo route. Though in that event it could be surprising how many people would openly or at least anonymously financially support such a project via marketing on all the existing educational and support platforms (ie. including perhaps those too afraid, for any reasons, to relate their own experiences or to warn).
Regarding raising awareness to save lives faster, I thought the Akathisia T-shirts were a good idea.
But what we may really need is a ‘Covfefe’ style internet chattering point for the word Akathisia (a word with a meaning and an important meaning!) to enter the cultural lexicon.
Even for the word ‘Rxisk’ more generally – of import to ‘anyone who takes medication or who may’ ie. everyone. (Except Trump of course who is, amongst other things, according to himself, and in writing his own medical report, in ‘astonishingly good health’…).
Although suffering from some fatigue now on social networks as so often used to raised awareness of other causes or campaigns, it would be great if there was a way to bring possibly affected or interested ‘celebrities’ or famous people on board with a ‘mysterious’ hashtag ‘Akathisia’ (and/or Rxisk) and in a way optimised for viral marketing.
Tactics to save lives?
In all the noise, ‘the internet’ is often mainly arguing if a dress is green or blue or, more recently, if you can hear the word ‘Yanny’ or ‘Laural’. Simple perceptual arguments or riddles people like to ‘have a go’ at can go viral.
Failing projecting the word ‘Akathisia’ on sky scrapers etc (as I would), a less threatening but internet chatter raising way of trying get the word ‘Akathisia’ to enter the socio-cultural lexicon could be as simple, if done well, as sharing a selection of the best, or most amusing, vox-pops of most likely puzzled people asked how to pronounce the word ‘Akathisia’ (from a written piece of paper as the correct pronunciation is available online).
This, if possible, could also be kickstarted by a tongue-tying ‘argument’ regarding pronunciation of the mysterious word between two well known, famous people or celebrities with a lot of followers… And then quizzed regarding what they think it means.
(We can imagine some of the answers. “I don’t know, a rock band?”).
It’s actual meaning may not be given (to increase intrigue) but may direct people to a sharable link eg. the MISSD Foundation animated video on Akathisia or to another short and accessible, informative video on Akathisia and/or, or including Rxisk’s purpose and aims with an invitation to ‘follow’ and use Rxisk more generally.
This would require trying to reach a lot of famous people to perhaps secure the participation of a few. Even language lovers such as Stephen Fry (and who may be sympathetic to raising awareness if at all possible to get through to him) or other comedians (so many being language lovers). And where comedy can reach people and can play an important role in helping us to confront difficult topics – or words ie. nothing, of course, funny about Akathisia itself.
But if any were agreeable to sparing a few minutes to raise awareness of the word with the aim of saving lives, it wouldn’t embroil anyone participating in any ‘controversy’: there is no controversy that Akathisia is a real condition/ adverse effect of psychotropic drugs (even if how many thousands have endured Akathisia and died as a result of Akathisia or it’s actual possible prevalence is not known but can only be estimated, for so many reasons; known, in its degree, even those who may fall victim to it or who may be suffering from it).
So frustrating: all the crucial information is there/here, amassed so dedicatedly (and heroically I would agree) over 20 years and more recently, with Rxisk, in language and analogies that are accessible to most people.
Just another sad fact of the world that all, or what most, is possibly needed, is that good ‘IN’ from a credible and respected ‘famous’ person/s or celebrities with thousands or millions of followers.
Not at all an expert in the field of SEO or knowledgeable at all about how Rxisk’s marketing works (and against the billions of dollars spent on marketing by the pharmaceutical companies…) in terms of search engine enquiries regarding the possible side effects of medications, we want to whatever we can to get Rxisk up there in the higher, or even at top, of search engine rankings.
How to do this without what would be a massively time consuming and costly job in terms of online marketing and the endless amount of possible keyword checkers – especially given that people who may or may not be suffering from what may or may not be known side effects of any medication/s they are taking simply don’t know the clinical name for what they are experiencing or for a cluster of symptoms? And to drive more people to the site generally?
I read (and try to retain!) what I can in what feels, at this stage, like an irreparably damaged brain (and body) but I’m not as articulate or as well read up on the issues and current events, as most here. And most likely problems I’m not seeing?
But if people thought there was anything in it and had the knowledge and skills set to help approach any idea in the best way – or if anyone has any other ideas – I’d happily do the post guinea pig monkey work!
Deirdre, funny you mention rock band. The t shirt idea has been floating around in my head the past few days. There is a shop less than a block from my house that makes affordable t shirts for local garage bands, and they would do one for us. I was thinking of a groovy illustration of the hangman game with AKATHISIA spelled out in the spaces underneath.
Not sure i can take this on as doable as it seems. But I’m seriously considering it. I could get 50 made at least, if i knew of folks who would buy them for about 5 bucks each. Anyone’s ideas welcome here.
Laurie, we were thinking the same way. What one could do is get RxISK.org to finalise a design, and we all download it and get our own tee shirts made. If we had a few extras we could give them out to interested folk. The hangman game would be better than having an image of dead children hanging I feel, ( my husband says he couldn’t walk around with that image on his back, and cowardly though some may think us, I feel the same). I actually think Tim’s words, ‘don’t die of ignorance, understand AKATHISIA’, even without an image, would be better because then folk will ask us what it means and we can engage with them and really explain. Maybe have the http://www.MISSD.org website on there so they can see the short film on their site which explains it exactly.
The reason I feel so strongly about promoting knowledge of AKATHISIA in preference, say, to concentrating on PSSD, is that you can get AKATHISIA from ANY medication if it thus affects you. RoAccutane isotretinoin can trigger it, psychotropic drugs, anti-histamines, steroids, anything. Coroners would be more interested if we show that so many prescribed medications can cause suicide in people affected like this.
My question would be whether or not it would be appropriate to reuse “don’t die of ignorance.” I wasn’t sure.
Also, I feel David and RxISK are already doing so much on our behalf. Perhaps this is something we can do.
Genius idea, Laurie
Here is a doodle of your idea, image from google
You have made a very generous offer, but wouldn’t it be easier if we all ordered our own T-shirts and sold them to our friends – pyramid selling
Hi Annie, I wasn’t able to see it, for some reason the link didn’t work. The larger the order the less cost per shirt is the idea, but I’m open to doing it whatever way seems best to everyone.
Hi Laurie, just a few thoughts
HIV/Aids: Why were the campaigns successful in the West?
Rxisk on Akathisia
Thinking along Heather’s lines may be we don’t need a graphic, and my hangman image was may be too graphic.
Don’t Rxisk it
I think we need our own original slogan Don’t die of Ignorance was so good but it’s not ours
Any more suggestions from any body as to what we put on the Tee, as this could develop in to further campaigns so its important we get a strong message and get it right
Sorry the link didn’t work as I downloaded a google image from ‘Hangman’ and put A K A T H I S I A under it, each letter underlined, followed by a smaller @Rxisk and it looked good, but, looking now not sure it was simple enough to understand and we need to direct people to be further enlightened ?
Annie, great food for thought. I really like “Don’t Rxisk It.” That may seem anti meds, but something along those lines would be good.
“AKATHISIA ——- DON’T RxISK IT”.
This is just perfect. Thank you. Any proceeds to the RxISK PRIZE.
Hats off to those who’ve posted several great ideas for public awareness campaigns/slogans/marketing materials/t-shirts and so on. Regardless of the slogan, the best route to increasing awareness is through grass-roots, guerrilla marketing tactics. (see: http://www.creativeguerrillamarketing.com/what-is-guerrilla-marketing/ )
At an AFSP “Out of the Darkness” walk, we carried signs with simple messages such as: “Prescription drugs cause akathisia.” “Akathisia causes suicide.” “Help AFSP bring akathisia out of the darkness.” and “See RxISK and missd.co.” By going directly to an event where people attending where concerned about suicides, we reached people who had no idea drugs cause iatrogenic “suicide.”
Since there are few, if any, corporations and/or government entities directly dedicated to reducing ADRs/ADR deaths, it’s difficult to imagine one day seeing a “Reduce ADRs Now” campaign similar to pink ribbon breast cancer campaigns, diabetes awareness, etc. But we can still hope that one day the public will be more aware that ADRs and medical errors are the 3rd leading cause of deaths. Increased public awareness of akathisia will reduce akathisia-induced suffering and deaths. More importantly, perhaps it will also spark a broader dialogue regarding the real risks vs. benefits of all pharma products.
Totally agree Tim. What colour and font does everyone think best?
Or, “Know the RxISK,” if you believe an akathisia causing drug is ever necessary.
Also, listening to Sally in the comment below.
The posts of Heather and Kristina are riveting and invoke intense anguish.
I have now heard 2 NHS psychiatrists propose off-label antidepressants to dispel suicidality – in fact, they propose the one with 3.5 times the deaths as fluoxetine, just “to do something”. All I can do is continue to ask them what on earth they think they are doing.
Hi again Laurie
Hope you are well!
Maybe if you could look into the possible graphics of the T-shirts and share for discussion re the ‘Hangman’ game theme….
If enough support I’ll cover payment for them all/get payment to you, help with getting them sold, worn and shared on social media as much as I can (from Ireland).
Or could serve as a small R&D test ground for the T-shirts and potential to raise awareness if you live near a city in the US?
Any potential for raising awareness and saving lives, I’ll then look into doing the same here with the same T-shirts in Ireland (where prescription levels have escalated but not general awareness) and see if anyone could help out in the UK for ‘launch’ at the same time.
Before any of that, how could we first ensure any awareness raising chatter would direct people beyond ‘Wikipedia’ to more honest and accurate awareness of the adverse effect etc, how to identify it, identify it in any loved ones, to report it to GPs and psychiatrists (and beyond). And to help save lives, improve health and better inform the public more generally with regards to the known side effects of medications to Rxisk?
I believe the MISSD animated video would appear under videos on Google.
I think it’s great (even if, for me, my experience/s were far more horrific and I have read of endless much horrific experiences on Rxisk, from early studies and elsewhere).
But it refers to akathisia as a ‘disorder’ in the video.
And no mention, crucially for many, that any violent thoughts, feelings etc. or compulsions can also turn outwards…
(Pity we couldn’t have heard the voice of ‘The Man Who Thought He Was A Monster’).
Science Bitch! (as the kids say generally!) and no one gains, as we know, by shying away from this.
Nor thought provoking background on how this chemically induced animal came to be let loose on the public, including upon children, how many thousands may have died, of it’s possible prevalence.
Moreover of the commonplace likelihood that (even if you recognised it) that many medical professionals will fail to recognise it, appropriately treat and report it. More likely it will be misdiagnosed…introducing or adding more ‘diagnoses’ or problems into a polydrugging mix.
Stressing the importance of reporting symptoms (though so difficult in the throes of them) and the importance of insisting upon it being reported properly by the medical professional (if meeting the criteria of akathisia) is also (long) needed.
But the video already has over 69, 398 views and has no doubt helped so much -fair play to them.
But on the chance any other campaign could be successful.in raising awareness, beyond saving lives, we also need to invite enquiry into the present medical model and more empowered and positive action I guess.
Also checked letters from Generation XR…
Never know, maybe Tilda Swinton or other famous people who have been vocal in their suspicions or opinions that a drug or polydrugging may have had a role to play in a fellow artist’s or actor’s suicide may at least like to raise awareness for those who definitely suffered from Akathisia or may by wearing a T-shirt.
And who doesn’t love Tilda Swinton? Pure class, credibility – and edge.
(I’m also serious, if and when I can, of projecting the word or a stark one liner to raise social consciousness and shed light on darker issues on buildings! Jenny Holzer style! But I’ve been thinking this for years!).
I know of someone who could design it, and for a reasonable price. The website where the video can be found is http://www.missd.co:
“MISSD (The Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin) is a unique non-profit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from akathisia’s symptoms are accurately diagnosed so that needless deaths are prevented. A website, the creation of educational materials and support of conferences will help to raise awareness and knowledge of akathisia and medication-induced suicides. Again, we feel it’s important to note that we are not anti-drug, and recognize that prescription drugs can be positive and life-saving for many individuals. We are for truth in disclosure, honesty in reporting and legitimate drug trials.
If this could happen to Stewart, then it could happen to anyone. MISSD will make a difference.”
Sage Therapeutics gets ‘go faster’ permission from FDA on oral depression drug
By Adam Feuerstein @adamfeuerstein
June 12, 2018
ood and Drug Administration Commissioner Scott Gottlieb wants more drugs approved, faster. Toward that goal, the agency is permitting Sage Therapeutics (SAGE) to conduct fewer and shorter clinical trials for its second drug to treat two forms of depression, the biotech said Tuesday.
The accelerated development plan for Sage’s depression pill, called SAGE-217, emerged following a meeting with FDA regulators. If clinical trials are positive, the FDA will allow Sage to seek approval for SAGE-217 to treat major depressive disorder and postpartum depression faster than previously expected.
At the risk of kicking off an argument again – I’ve just read through all three blogs. This one moves from serious dissent to T shirts in an astonishingly quick time which is maybe good, maybe not. I thought the images were intensely distressing. I would like to acknowledge that for Johanna they were not appropriate in this context. However – where the hell, for the rest of us, are the images of what actually happens when someone (like me) hangs themselves as a result of psychiatric meds? I would gladly have provided any number of photos of me being unstrung from the wardrobe in which I damn near died but no one actually took any at the time. I am constantly frustrated by the coy ‘we must protect people from offence’ timidity that kicks in around suicide, let alone the blasted Samaritans number cropping up every time a suicide is reported. There are no images in the public domain. We have smothered the fact that people – kids – kill themselves, because no one is willing to tell it how it is. We are never even told how someone did the deed – OK maybe there’s an element of avoiding voyeurism around killing yourself but I doubt that’s the real motive. I have no idea where the idea that thousands of people will instantly go ahead and follow suit if the media gives the details comes from. I’m interested that SSRI-induced suicide is nearly always violent – and hanging is a constant theme. I’ve yet to read anything that directly points that out, but it’s probably around somewhere.
As for moaning that the content of the post – the criminal state of kids dying and/or suffering in what passes for treatment for mental distress right now – got derailed by the images – well it was. Not surprisingly. Catch 22 really.
I’ve spent a lot of time on here urging people to be kind, stick to the point, don’t alienate the very readers we want to get on board, try and understand the other points of view but have come to the conclusion that it was a waste of time. Nothing has changed. Like Heather, I think (bangs head on desk) well what the hell do we do? What do you want us to do David, except stop being so polite? Give us a pointer. Give us a hand. There’ve been so many creative and energetic ideas bounced round over the years – people have written their stories, researched, tried to get together, taken Rxisk reports to their medics, set up support groups, written blogs, painted pictures, held vigils, written openly about their sexual problems- you name it, we’ve had a go. But there are limits to what we can do, without direct support, at the same time as struggling with all the legacies of damage; one of which is horrific vulnerability to abuse by the medical system. I ranted about that elsewhere but it’s true. Fending off threatening phone calls, text messages and letters from my surgery because I’m a non-compliant diabetic is sapping all my energy right now as it is. Receiving a letter from my GP, containing an appointment to a ‘therapeutic review’ of my diabetes nearly sent me over the edge yesterday – because it was with two ‘trained pharmacists’ from Takeda Pharmaceuticals. Who happen to make diabetic meds. I nearly bloody died on the spot when I read it.
One thing I’d do – apologies to Tim and Heather and Mary – is think up a better name than akathisia before you print the T shirts. It is deep down unmemorable. No one can spell it or pronounce it. No one has heard of it despite all the efforts – I mentioned it to someone who’s had long experience of the drugs and being a patient last week. He’d never heard of it and I’m not sure he didn’t think I was making it up. It’s too broad – ranging from not being able to sit still, to hanging yourself in the wardrobe of your room in a mental hospital. And get a better description out there of what it actually feels like. I’m happy to do that. And I’m more than happy to draw/paint images – as graphic as you like – of the terrible things that I did, under the influence in the absence of photos.
Courageous Sally, Great comment. Thank you.
Maybe all attempted/completed suicides should be routinely photographed and recorded in the case notes.
The coroner / Critical Incident Review Team must then address these images alongside the ignorant, ill-advised changes in dose/type/additional/withdrawn SSRIs/psychotropic/psychoactive drugs which induced the AKATHISIA causing the suicidal ideation.
I had practiced medicine for 37 years when, unknown to me, an akathisia-ignorant GP prescribed SSRIs for our loved one: (for exam stress FGS!) – rather than share a few words to reassure and encourage self esteem.
Two or three minutes of encouragement during a consultation would have saved a lifetime.
Saved our whole family.
No – why bother?
A prescription for an SSRI can get the patient out of the consulting room in half that time.
No need to prescribe with informed consent.
“If I were you, I would take them” when she tried to say I’d rather not.
This is in a Training Practice for future G.P.s.
As the AKATHISIA intensified – the GPs changed from one SSRI to another feeding and fuelling the neurotoxicity in their (deliberately created)
If they had, (and if I had) heard and understood “the word” before the kidnap, abuse, ridicule, maiming, drug wrecking, serial incarceration, disfigurement and destruction of the rest of life:
This catastrophe would have been totally avoidable.
IT WOULD HAVE BEEN BARN-DOOR OBVIOUS that this was AKATHISIA, that this could only be an Adverse Drug Reaction.
They – (and I) could have saved her, had only “the word” been known.
If it had been a not-disimilar ADR – called an occulo-gyric crisis,
I would have diagnosed this in the first 10 –> 30 seconds.
This is because I had heard of it, been taught what drugs caused it, and how immediate emergency treatment is critical.
I had never heard “The Word”.
If the drug companies, the regulators, the reps and the clinical trials had reported what they always knew and had seen, then we wouldn’t need our Tee Shirts.
Using words like “hyperkinesis” and, apparently doses of diazepam sneaking past the clinical trial protocol: akathisia-awareness was hidden from prescribers for perhaps some twenty years.
They hid it away from doctors, patients and families at catastrophic costs to many thousands.
This has devastated so many of us, our families and our respected and valued – friends and supporters here on David’s blog.,
We all know only too graphically what that akathisia-ignorance has caused us.
This really is a comment of congratulation to you on the importance of not hiding the extremes of prescription drug induced self-violence outcomes.
A concept which is so eloquently crafted in your opening words.
I do realise the praise may be partly concealed by my concern about –
No doctor should ever be allowed to prescribe SSRIs/SNRIs (or any of their akathisia inducing “medications”) – until they have attended an AKATHISIA AWARENESS COURSE”, where people like us, wearing our: – “AKATHISIA — DON’T RxISK IT” tee shirts can be a part of the teaching/learning group.
If they achieve the necessary level of understanding, and learn how to differentiate akathisia from “serious mental illness”, they will be given their C.M.E. certificate and our Tee Shirt!
Then, and only then, (but only amongst ourselves) we can call “it” whatever suits our own individual preference, because unlike those who poisoned us or our loved ones, we are caring, compassionate, empathetic, very well informed and respectful of each other.
I am with you in the shock and disbelief that pharmacists-from-Pharma intend to protect your health and well being. Truly hideous C of I.
I was searching the web for a GP in a town where I once lived.
I may be wrong but it looked as if all GP Practices there might now be under the umbrella of a private “Health Care” company.
Could that really be possible?
Is this really what is happening???
The notorious Cioriani et al. mega-analysis of antidepressants included many trials in which participants took sleeping pills, including benzodiazepines, if they wanted to. Why do those studies ever see the light of day? They cannot be considered valid tests of antidepressants. Would any other medical discipline get away with clinical trials in which some subjects got the straight dope and others got that plus woozy-pills?
Offering a treatment for insomnia that happens to take the edge off akathisia would greatly hinder trialists’ (respons)ability to report a devastating adverse effect. And the treatment happens to include a very harmful class of drugs, so a new bunch of benzo addicts must have been created in the process of deceiving prescribers, insurers and the public.
It would be one thing if authors of the original studies or Cipriani made it very clear that they were reporting the results of compromised studies in which antidepressants were combined with hypnotic-sedative-tranquilizers, but they don’t. The studies as such mean nothing, and the Cipriani paper should be retracted. It means nothing. Nothing!
And if you look at the worthless HAM-D scale the mega-analyzed studies used to quantify depression, it is obvious that participants’ having a nice warm benzos cuddled up in their brains would certainly move their scores into the less-depressed range, merely by resolving the insomnia that HAM-D over-emphasizes and also by improving daytime anxiety, which is also a contributor to HAM-D scores. Even if the antidepressant had no effect at all, benzo use could explain any study’s positive results.
Cipriani et al. informed us of the number of studies in which drugs for sleep were allowed, but not how many subjects were in those studies.
Between the access to sleeping pills and reliance on a worthless measurement instrument, the Cipriani conclusion was bunk, but I don’t recall reading that in any of the media coverage.
So that is how we find ourselves reeling from the effects of akathisia in ourselves or loved ones, so many hearts broken and lives destroyed. Stupid researchers, dishonest ones, stupid journal editors and stupid publishers, editors and journalists. I’m all for blaming the prescribers but they barely have a chance to know these things, given the ocean of crap the truth sinks in.
I thought akathisia sounded unpleasant even for people who don’t know what it is. It might be good for people to ask what it is they need to be worried about. You could call it something like “restless movement syndrome” if that gets it, but it might sound too mundane, and not express the full nightmare of living it. I would say as something of an interloper market “akathisia”: ‘IN THIS NAME SHALL YE CONQUER’.
No, sorry Sally, much as I agree with everything else you say here, it has gotta be the word AKATHISIA. the MISSD film spells it out, (and this is a vital resource to direct folk to) Katinka Newman bases her book on it, and yes, sure, it relates from agitation at the one end to death at the other, and relates to all categories of meds, but surely that’s a GOOD thing. We want something all inclusive that generates discussion. Husband and I have been going to so many events where we’ve got up and held up our card banner with AKATHISIA written on it, and got interest when we explain it. We start by saying, ‘how many people know what this word means?’ Immediate attention, listening ears up and at the ready. By and large people (except often doctors) LOVE to learn something new, to spread around. They go off bouncing with this word, it’s great to see them, full of incredulity and open eyed. They sure won’t let their loved ones die from this if they can possibly raise the alarm in time.
As to means of suicide, well, I think it’s better not to elaborate in too much detail for fear of copycat use, especially amongst the very young. But suicide NEEDS talking about, and when they’re gone, it’s too late; this is the horror of our century, a civilised (supposed to be) society that is drugged up to the eyeballs by money-grubbing bastards who make this stuff, and silly uninformed rushed medics who prescribe it. Yes, Sally, lots of banging head on table over here. I must keep calm or I shall go mad….I must keep calm or I shall go mad, I could write it out as lines 100 times like I have done about this issue everywhere, but it isn’t helping my sanity. I want to know what more we can do. Just tell me what colour to print my own tee shirt, what font, how big, and I’ll do it. Put an example sheet up please Dr Healy as an illustration to your next post and we can all copy it. (I think Blue is nice, personally but anything will do, but just let’s get on with it. And people who don’t want to wear one don’t have to, there’s no pressure). It will be good to get a plug for RxISK too at the bottom, if you agree.
It is not the USE of the word AKATHISIA that is the problem here, it is MEDICAL IGNORANCE of the word.
The problem, and the psycho-pharmacological deception that has killed and destroyed our children Heather is that the perfectly correct and long established medical term for this life-threatening and life-taking ADR has been coercively denied both use, and understanding within my profession, and hence, via our own ignorance and default, our patients have not heard of it.
In the recent (embarrassingly mediocre) Royal Society of Medicine podcast, I think I heard a sound something like “Akkkah – Thyssssia” whispered in hushed and hallowed tones.
If so – that is a welcome start.
Far more effective is to succeed, as you and your husband have, in increasing AKATHISIA AWARENESS by holding up your card and welcoming the immediate curiosity.
“By and large everyone (except doctors) loves to learn something”.
In my hospital speciality designated, General Practice, six month training post, our trainees loved to learn everything possible, and their endless enthusiasm elevated the academic atmosphere of the department.
They would loved to have learned that they would be able to protect their patients from iatrogenic, AKATHISIA-induced suicide and prevent multiple major prescription drug injuries —- if only their teachers had themselves known and understood that ignorance of akathisia is leading to the deaths and devastation of the lives they wanted to enhance, and severe adverse sickness experience which they had worked for so many years to prevent or alleviate.
The responsibility for akathisia lies in the holder of the prescribing pen.
Our G.P. trainees were amongst the most capable, open-minded and inspiring junior doctors for over 25 years.
We must identify:
What happens to make these committed and gifted young doctors metamorphose into prescribers who peddle drugs as potentially dangerous as SSRIs for exam stress?
It is surely conspiracy within the marketing of drugs, relentlessly delivered by the appraisal driven, commercially controlled “Continuing Medical Education” (C.M.E) stamp collection which creates such complacency, mediocracy and patient harms.
This is augmented by “clinical guidelines” derived from ghost-written publications and based on data unseen by the guideline writing industry.
Consultants learn from their juniors and vice versa.
Throughout my career, both groups learned from every patient in every consultation, examination, differential diagnosis, clinical management decision and explanation of findings, followed by the patient questioning their doctor.
How I wish that a decade ago – just one of my patients had sat down wearing an “AKATHISIA — DON’T RxISK IT” tee shirt.
Apologies Tim, I didn’t mean ALL doctors don’t want to learn, that’s why I wrote ‘except often doctors” in brackets. It’s just that when we talk one-to-one to consultants and often GPs, they do listen when we ask them about AKATHISIA. but often they don’t seem to really engage when we say how dire this is if it affects you or you watch and struggle to help a loved one with it. They seem to think it’s the fault/instability of the patient, even so.
I will never forget seeing our son Olly pacing round and round the kitchen, shaking, shuddering, picking things up, putting them down, unable to sit calmly and rest at all, except sometimes by MAKING himself play a computer game, ( and we hear in the News today that compulsive computer gaming is now being branded a mental illness. I wonder how many frantic computer game players are doing it to steady down their AKATHISIA? ).
We didn’t know about AKATHISIA when our poor exhausted son couldn’t rest, we thought (God forgive me) that he’d gone totally crazy. We bought him a mini trampoline. He bounced up and down in he hall. He ran up and down the stairs. At night there was no refuge in sleep, weary as he was, because the dreams were nightmares. We thought the need to work off this energy was high blood sugar, but he was eating sensibly and normally when he could sit still long enough to do so. He lost masses of weight, not from choice, but with all the rushing around, and may well have been considered, wrongly, anorexic, because those ‘treating’ him didn’t understand what AKATHISIA was, so they raised the Sertraline etc dose….and he got worse. Don’t let’s forget, he was trying to keep his previously very successful own business going through all this, engage with staff and clients. And absolutely the worst part of all of this for me, remembering his agony, is THAT HE BLAMED HIMSELF, THINKING HE MUST BE A MAD PERSON. No one told him what the medications were doing to him. No one told him this was AKATHISIA, because NO ONE KNEW, we assume. Instead, he was branded as attention-seeking!!
There must be thousands of other people going through this, watched by terrified puzzled unsupported families. It is, we feel, the worst torture on earth. No wonder he died. No wonder he actually asked me to finish him off sometimes. No wonder he ended his own life finally, after suffering AKATHISIA in various degrees over a period of 11 years and having drug doses endlessly switched and raised to worse levels near the end. No wonder, like Sally psychically states, I am almost banging my head on the table. This situation is utterly awful and we HAVE to raise awareness.
There is an opportunity, tomorrow …
Carmine M. Pariante @ParianteSPILab May 25
On Tue 19th June, 5pm (GMT), @joannamoncrieff and I will be joining @dannydwhittaker for a LIVE YouTube debate with audience Q&A on the topic of Antidepressants. Stay updated and/or submit your questions using the hashtag #PsychLIVEQandA. @rcpsych @BAPsych – please RT!
Carmine M. Pariante Retweeted
Danny Whittaker @dannydwhittaker 20h
3/3 Use the #PsychLiveQandA hashtag to submit your questions. Alternatively, click the hashtag to see questions already submitted and LIKE to up-vote your favorite question. The most popular questions will be included in the Q&A portion!
Antidepressants Live You Tube Debate
Tuesday 19th June, 5 pm GMT
6:30pm – 7pm
30 min audience Q&A.
My own worst enemy
Bookmark the following link:
From 4:45pm on the day of the event this link will take you directly to the YouTube Live page where the debate is being broadcast.
Seldom have I heard such nonsensical nonsense as that from Allen Frances who wants to save normal..
As an international psychiatrist, with books, articles/interviews in the press, twitterati on Donald Trump – he does not understand ‘Akathisia’?
‘Readiness is all to avoid acting on the moment’, will not sit well with those who’s Akathisia is a blinding light of drug induced suicidal impulses .. without time for simple/automatic/definite steps ..
Allen Frances @AllenFrancesMD 22h
Allen Frances Retweeted John Richmond
Most #suicide is an impulsive reaction to transient desperation/hopelessness/isolation. #SuicidePrevention helps people identify high risk moments soon enough to implement simple/automatic/definite steps for getting needed help. “Readiness is all” to avoid acting on the moment.
Just to say what a great post Sally; exactly how I feel and so sorry for what you were put through.
And thanks for enlightening thoughts on raising awareness Kristina. To all. Guerrilla, generally, may be the way forward.
I also agree with Laurie and Tim regarding the need for the word ‘Akathisia’ (and well put!).
Just to ask David or anyone – and forgive any obvious ignorance here – if there is are any ‘spot the difference’ images which may be used to indicate what may be SSRI-related hangings (the kneeling) or a most likely ADR or iatrogenic suicide.
Presumably, in sheer number alone, a relatively new ‘phenomenon’.
Not with regards to the T-shirts discussion/s specifically but I know – and whilst still on the topic of making the hidden and invisible more visible – it might also be easier for the unaffected to ‘see’ in all the grey, complex, confusing, cart or the horse, muddied areas; more of a chance maybe, to ‘get’.
“Migrant Children Drugged Without Consent At US Government Centers, Court Documents Show”
As if these children won’t have enough trauma related health problems from their experience
How do you deal with a system fueled by money, ego and no ethical system? There are no strict, conscious informed consent laws.
I struggle with impulses to self emolate due to despair caused by meds and sense of protest. I recall there were self emolations in the middle east that prompted the Arab Spring.
In the last week Senators in the Irish Government lead by Senator Frances Black & past Justice Minister Michael McDoughal got a Bill passed to boycott produce & goods from Israel – I wonder did Israel retaliate by doing strict changes in their Government. Senator Frances Black is a singer, internationally known with her sister Mary Black – one song well known is “A Woman’s Heart”. The reason for her Bill as because of the way Israel is treating Palestines. Indeed it is hearbreaking to hear and watch the atrocities of children been killed and indeed Senator Frances Black is getting many acolades for bringing in such a Bill – I would not be surprised if she ran for President of Ireland which is coming up for review soon.
I stand aghast perhaps alone at Senator Black’s public performance – Israel when they first heard of canvassing for this Bill called the Irish Ambassador to Israel. The Israel Ambassador to Ireland may be recalled. Such violence is already stirring.
I guess you all wonder where is this going…what has this to do with dissent, drugs,hangings & people setting themselves on fire…
Senator Black & all in Leinster House know of the Pharmaceutical industries control of Ireland which I lately refer to that Ireland is now a Paedophile & Pharma Colony…They know of corruption in HSE to the point of cover up of smear test results with the result of many women who were given wrong results have since died.
I will leave some links below but first I must mention the words of a great Lawyer in the UN Geneva who sadly died in 2017. His name was Sir Nigel Rodley and in the case of the Sympysiotomy women (Married young women have their first babies – doctors decided to try an experiment – those women now in their 70[s & 80’s recall the doctor coming in with a Saw in his hand – like the saw one would saw up wood for the fire with)…the doctors sawed the Pelvic Bone & opened it like the door of a cage to take the baby out…what is most sadistic is that the nurses & nuns would not like those mothers lie down and rest…I believe this would be to allow the bone to knit back – those women were made walk up and down every day held up by nurses or nuns so that the bones could not knit back together.
Decades of torture followed In 2014 Sir Nigel Rodley stated to the then Justice Minister Frances Fitzgerald “The UN have had it with Ireland, First the Industrial School Children, then the Mother & Baby Homes, The Magdalene Women and now the Symphysiotomy Women…He went on to say that he had difficult sleeping having read some of the stories of torture those women suffered. He told the Minister for Justice that Ireland have to hold those doctors accountable” The Minister kept nodding her head in agreement knowing that there were many other atrocities against women in the shadows…That was in 2014 – Not one doctor has been held accountable and the Government stalls compensation to those women as they die off.
Peter Tyrrell was the first whistleblower on industrial child abuse in Letterfrack – in frustration at not being believed or helped he sat himself on fire on Hampstead Heath
OK. I think it ultimately stupid to set fire to yourself. I don’t think it really helps with anything. It’s a very extreme example of dissent.
Saying that it is important to publicise horrific abuses. The story that always comes to mind for me is when I was back packing in Mexico. I was in Tijuana and passed a Newsagent. Outside on the street they had a news stand with magazines about gangland killings. One had a photo of some poor fellows severed head in the middle of the street. I was horrified ! I’d never seen anything like this before (I was 24). But later on I thought, well, at least the Mexicans are honest about the dangers out there. You won’t find magazines about comparable abuses (children killed by psych drugs) in a British newsagent. You won’t find them in the magazine rack. You won’t even find them on the top shelf.
Despite the necessity of publicising abuses I have found that campaigners in Britain (I’ve been in this game since 2006) endlessly promote horrific details of abuses expecting that to get something done about it. As I said that is obviously an important part of campaigning. But that’s all they seemed to know how to do. Too many horrific images without counterbalancing information just depresses people and disempowers them. You have to raise moral and tell them they can WIN ! Where are the positive examples ? In Brazil they threw out these corrupt practices years ago. In Italy they passed a law in 1978 that closed down all their corrupt psychiatric institutions, after collecting 3.8 million signatures. Why is that not at the forefront of the campaign ?