Editorial Note: This post perhaps should be called: There’s Something about Leonie. The image above is of a Rapid Response she submitted to a BMJ editorial by Richard Smith and Fiona Godlee that BMJ published and unpublished and republished and re-unpublished. The full story is here. It again hinges around Study 329.
The full transcript of her exchanges with Ben G is below. It’s important. It suggests AllTrials see the side effects of drugs as irrelevant.
Hi, this is to do with, specifically to do with Study 329. The BMJ took a year to publish the Restoring Study 329, the reanalysis of Study 329. I was just wondering what you thought of the fact that, would it be a factor that the BMJ clinical editor is married to a partner in Ropes and Gray, the same law-firm that GSK paid to defend them in the US department of justice action?
I don’t know – also I don’t care. Honestly, conflict of interest, it happens – and it is clearly problematic. I don’t find it interesting, in the same way as I don’t find fraud interesting. So, I’m not saying that it’s not important. I’m just saying, it’s not my thing. Conflict of interest is also what people who don’t understand trial design talk about, and it’s kind-of all that we talk about. So, all of the, almost all of the popular discourse around problems in research in medicine that you see mentioned it’s almost all about financial conflict of interests and I just feel like that’s really, that’s all we talk about, it’s well covered by the .. but it’s not, it’s doesn’t set me on fire.
I don’t think you can honestly say the BMJ are the bad guys in the world of suppressing medical research, and if anything, they’ve got a reputation of being, a kind of sanctimonious obsessives about research integrity.
And when you say it’s been a year to publish the reanalysis of Study 329, But firstly, I don’t think we needed a reanalysis of Study 329, honestly – it was a rhetorical act. It was interesting that someone went out and did it. But we knew that within six months of the trial being published, that the trial was crap. We knew within six months of the trial being published that it had been misreported and all of the stuff that I had showed you on that slide that Study 329 misreported it’s from a paper by Jureidini that came out almost as soon as Study 329 did. So we already knew, we already knew Study 329 was crap and study 329 was published 20 years ago.
I’m glad that someone did a reanalysis of the underlying data, to show, yet again, that it was dodgy and I’m glad that they got some media coverage, for showing, yet again, that Study 329 was dodgy, and showing that people switch outcomes. But actually, I’m more interested in the fact that there has now been 29 cohort studies, showing that on average about a third to a half of all trials switch main outcomes. It’s not about Study 329, it’s about these endemic structural problems throughout the whole of healthcare that we can fix. And I don’t know what fix you’ve got in mind, cos the fix that I’ve got in mind in the misreporting of outcomes, is, we need to hold journals to account when they misreport outcomes, and we need to stop then doing that bad stuff. But I don’t know what you do about, I don’t know who ?? person is.. but I don’t know what we should do about that?
But it’s still unretracted?
Study 329? You think the BMJ should retract Study 329?
I think it should be done by somebody.
But the BMJ didn’t publish Study 329.
No, but, GSK then. Whoever, whoever wrote it.
Yeah, I mean I think it should probably be retracted. BUT, again, what’s the purpose of a retraction, because anybody switched on knows that Study 329 was crap – and, also are we going to retract the tens, possibly hundreds of thousands of clinical trials that also switched their main outcomes? I mean, maybe we should, but that’s a really big piece of work and why would we, why would we be more interested in Study 329, than the tens or hundreds of thousands of trials which we know switched outcome? I mean this is a systemic structural problem. I mean Study 329 has rhetorical value for getting the media interested and engaged. But why are we trying to retract that one trial, rather than a hundred thousand trials that also switched outcome?
I just want to ask a similar question, about Study 329 as well. Is outcome switching not basically fraud then? Is it not fraud, switching?
Would you call it fraud?
So, it’s really interesting isn’t it. I think, it’s very, very interesting how the lines have been drawn between fabricating your data, actually going into the spreadsheet in excel and deleting the number that’s there, for the, for the patient’s blood-pressure, and typing in a new one. That’s fraud.
But, all of these different design shortcomings, which we know, are associated with over exaggerating treatment benefits and downplaying side-effects. That’s not regarded as fraud. I think that’s really, really interesting and it’s not a, it’s not a position that I’m sure, that I think I can respect. Because what I think is when you get the wrong answer you hurt people, and it’s your job to get the right answer.
In the case of 329, wasn’t there a lot of teenagers damaged? Young people were prescribed the drug on the basis of it.
Yeah, but, like, why are you talking about teenagers and Paroxetine? We’re talking about the whole of medicine. Like, so what’s special about 329? What’s special about ..
Is it not the canary in the coal mine, no?
Is it what?
Like, it’s the most publicised example of a corrupt study?
Emm, yeah. It is this year, yeah.
Sorry. Why is it not important?
Why is study.. No, Study 329 is important but I don’t understand why you’re so interested in Study 329, when we’re talking about structural problems throughout the whole of health.
Well it’s just one of your examples, that you had in your slides.
Yeah, I’m happy – I’m totally fine with that but I think, I think it’s a real strategic error and a backward step, to be preoccupied with one study, when you’ve identified structural problems throughout the whole information architecture of evidence based medicine. When you’ve identified a problem that hits, like a third of all trials, then I’m not sure that I care about ..
Can I just ask another question, because I find it this stuff interesting. You’re talking about antipsychotics and antidepressants, and you know, the dodginess of some of the trials, but, do you not think the medicalizing human distress is also the bigger problem?
That’s about informed choice. So I get a sense of, that maybe you’re coming from a particular standpoint in mental health and that’s a partial view but I think with, with any treatment the right thing to do is to say, look, for the problems that you have, there is very good evidence, that this is a medicine which exists, which is been invented, which is available on prescription. From the best evidence we have, overall it looks like it has the following benefits and the following harms and it’s for you to choose whether you’d like to take it.
Now that works really well for most treatments, except it’s not done properly. So first of all you need to get better at disseminating information, not just to doctors but to patients, as I said… That would be my funding priority for a whole year to get better shared decision making between doctors and patients and then you can say, well look, with this statin, you get the following objective benefit with the risk of the following side-effects, you make your own choice.
And the thing that we know, from all the research on decision making, is that different people make different choices. So some people when they’re offered Statins say “ ..I don’t want to be medicalized… Even if the does overall reduce my chances of heart-attack, stroke and death, by two percent over the next ten years, I’m not interested”. But, some people will say “Yeah, I definitely want that drug, are you insane? Why wouldn’t I take that drug – I want to live?” So different people make different choices on the basis of the same information and I don’t know if it’s for me, to bring my own personal views and prejudices, which are actually, between you and I, and the room, more aligned to yours, than to most of the psychiatric profession, but I don’t think it’s for me to bring my own prejudices to bear on that. I think it’s for me to help my patients make an informed choice on the basis of the best currently available evidence and if they want to take an antidepressant, where the best currently available evidence shows that it will reduce your Beck Depression Inventory score by 2 out of 30 points, which is a modest, but nonetheless true benefit – then, that’s a choice for them to make, it’s not for me to bring my prejudices about medicalization of society to bear on that. That, that’s a choice for them.
Lady asks a question (edited out)
But I really want to know what you think about?
I just think when you’re saying about informed choice, a lot of people were prescribed antidepressants 15 years ago, maybe 20 years ago in the 90’s or whatever – they didn’t have informed choice, the side effects only came out when the general population of millions of people were prescribed them. So you’re talking informed choice now, but there wasn’t then… so.. so
Yeah, I agree, it’s really shit isn’t it
That’s what we want to fix with proper trials and proper side effect monitoring and all of that but that’s very different than the broader, sort of cultural view you seem to have of medicalizing human distress.
I think the pharmaceutical industry have medicalized human distress, yeah.
There’s no doubt that people have marketed pharmaceutical products for medical problems for medical treatment. But nonetheless if this treatment will knock two points off your..
But you’re talking about scales and stuff that’s not applicable to people’s subjective experiences of these emotional problems.
Well it’s not perfect but it’s the best that there is and an informed patient will make an informed choice, they will look at their depression metric and they’ll know what those questions are and they’ll look at at and see well we can knock two points off that- and they can look at that and go well what would that actually mean? Yeah you’re right actually that could just mean just not waking up in the morning two days a week..
It’s all subjective…
So people can make an informed choice, and if they don’t make an informed choice, well that’s their decision too, and people throughout society on all treatments vary hugely on whether they want to be involved in shared decision making, and that’s their right…
It doesn’t happen in reality though. Well certainly not in Ireland- maybe in the UK, but in Ireland it’s not happening.
Well that’s what we want to happen. But also you have to be really careful about imposing your prejudices on other people.
I’m not imposing my prejudices on other people.Share this:
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It’s terrifying that people like this exist – trying to “flannel out” of Leonie and Guy
It is indisputable that Study329 revealed serious, fraudulent data affecting lives of children, at that time
For GlaxoSmithKline to Unleash Seroxat on me in the late 90’s was evidence of Fraud when they knew of PaxilStudy329
Leonie and Guy, you felled the ‘guy’ swooping down on him as you did……For Ben G to cuckold Fiona Godlee et al, hiding behind the Alltrials Mantra is possibly ‘aiding and abetting’ Sir Andrew Witty et al
Side effects, not withstanding, the waffle and piffle emanating through Ben G’s mouth is nothing short of heresy to all of us damaged and doomed from Paxil/Paroxetine/Aropax/Seroxat
As he bursts in to Auckland spreading his mania about Alltrials, he should look more deeply, and in, to:
1) Paxil Legal
2) Aropax Legal
3) Seroxat Legal
4) Alltrials, Legal…?
There’s a lot I have to say about the exchange of words between Leonie, ‘Guy’ and BG – to be honest I really don’t know where to begin – I was left scratching my head after reading the exchanges above – I’m unsure what to make of it all – I think BG is too?
BG: “Conflict of interest is also what people who don’t understand trial design talk about, and it’s kind-of all that we talk about.”
It’s condescending to believe that people who don’t understand trial design move on to something else. 329 doesn’t need the expertise of a number crunch/statistician to show us that it put children and adolescents in danger – in any event, the conflicts of interests were learned later on down the line – add the failure of the study together with the conflict of interests and you are left with a huge, seeping cancerous tumour. Even if we were to put the conflict of interests aside we are still left with something diabolical and dangerous – just because the layman, sorry, layperson, doesn’t understand trial design should not make their voices any weaker than those that do. In fact, from where I’m standing it appears as though those who are up in arms about such a dangerous study are the ones making the noise because they have witnessed something that put children and adolescents in immediate danger – this cannot, nae should not, be brushed aside on a whim. It cannot, or should not, be discussed then put to bed. What GlaxoSmithKline did was abhorrent – what Keller et al did was abhorrent – what Sally K. Laden did was abhorrent – not one single apology makes this act of fraud remain abhorrent and nothing can change that, even if GSK had a change of heart and apologised to those they put at risk or, worse still, those parents of teens who killed themselves after ingesting this ‘remarkable’ medicine in the form of a pill. What can change, however, is the likes of celebrity doctors, who have a bigger following than your average blogger, speaking out about it and calling it as they see it rather than glossing over it as if it was just a ‘shit study’ – it was more than that, it was, and still is, a study that was designed to dupe healthcare professionals, parents and teenagers, it was a study designed to make GSK money at the expense of putting children and adolescents in danger.
There you go, I’m understanding trial design already! What part of the 329 trial design is BG failing to grasp?
BG: ” I think it should probably be retracted. BUT, again, what’s the purpose of a retraction, because anybody switched on knows that Study 329 was crap.”
What about those who aren’t “switched on”? Doctor’s, psychiatrists, glossy magazines with opinion pieces – Were they all switched on when reporting the findings of Keller et al?
Let’s switch this around, what’s the purpose of it remaining a JACCAP article?
That’s where, upon answering, you will find the real reason why it’s never been retracted.
I think BG does raise some good points regarding informed consent…
BG: “That’s about informed choice. So I get a sense of, that maybe you’re coming from a particular standpoint in mental health and that’s a partial view but I think with, with any treatment the right thing to do is to say, look, for the problems that you have, there is very good evidence, that this is a medicine which exists, which is been invented, which is available on prescription. From the best evidence we have, overall it looks like it has the following benefits and the following harms and it’s for you to choose whether you’d like to take it.
“Now that works really well for most treatments, except it’s not done properly. So first of all you need to get better at disseminating information, not just to doctors but to patients, as I said… That would be my funding priority for a whole year to get better shared decision making between doctors and patients and then you can say, well look, with this statin, you get the following objective benefit with the risk of the following side-effects, you make your own choice.”
Maybe BG could influence the British drug regulator to think along the same lines?
There is, of course, one reason why we will never get full disclosure allowing us to make an informed decision – it’s a friend of the industry, it’s a tactic designed (there’s that word again) to keep patients away from making a fully informed choice as to whether or not a drug is right and/or safe for them. It’s something the MHRA, for example, would use as a smokescreen to cover their incompetence at regulating drugs, and it goes something like this…
If you tell patients there’s a risk of X,Y, and Z when they take a drug then chances are they will not take the drug and, as we know, there’s millions of people out there who have brain diseases caused by normal emotions. Hey, we don’t want to scare people because they need their medicine, right? Perhaps those hooked on antidepressants need their medicine but it’s not for the reasons that they were prescribed it in the first place – it’s a merry-go-round that isn’t very merry at all – informed choice is the way forward but it needs to be done with clarity, no stone left unturned, no lies, no playing down suicidal thoughts by labelling them as something else (emotional lability).
329 is the study that, rightly or wrongly, people will point at as an example of manipulation and fraud – nobody, not one single person associated with that study and subsequent JACAAP article have ever been hauled over the coals. In a nutshell, children and adolescents were put in danger, Glaxo and Keller et al rode the storm when the truth came out and continue to ply their trade. Glaxo, in this instance, now collaborate when BG’s All Trials. I don’t think BG quite grasps how sickening that is for those harmed by GSK’s drugs, or, moreover, those left to pick up the pieces after one of their children died as a result of GSK drugs.
Let’s not forget that GSK are not wilfully being transparent with clinical trials, it was something that was imposed upon them. Would you really want to work alongside someone who didn’t understand right from wrong?
Witty leaves GSK next year – he’ll walk away a wealthy man.
It inconceivable that Witty has been let off the hook. A millionaire who, like his predecessor, JP Garnier, (another millionaire) has never once apologised for putting children and adolescents at risk.
Kinda leaves a taste of bile in my mouth.
It’s truly stunning to see how Dr. Goldacre now frames the “choices” facing patients. Do side-effects (harms, downsides, collateral damage) even exist anymore?
Statin-taker: “I want to live!”
Statin-refuser: “I don’t want to be medicalized.”
This particular Talking Point has become all too familiar in the past couple of years: Patients who object to the side effects of their meds are answered as if they have raised some type of moral or philosophical objection to “taking pills to solve one’s problems.” Even when they clearly have not.
The doctor’s eyes glaze over, a condescending smile fastens itself onto his/her face, and the patient is gently encouraged not to be so self-judgmental, or rigid. To – you know – give Science a chance! You may even hear the old familiar line: “Would you be ashamed to take insulin if you had diabetes?”
It doesn’t matter how earnestly you protest: I’m not anti-drug. I’m happy to take advantage of Modern Medicine. My problem is dizzy spells, or a flatlined sex drive, or paralyzing fatigue, or an ugly rash on my posterior that makes it painful to sit down. (Or even, just maybe, diabetes.) Or whatever. The doctor’s ears are effectively plugged, while they bask in the warm glow that comes from seeing one’s self as an apostle of Science. The patient may get no help, but the doc feels ever so much better, and the prescription pad stays at the ready …
I know very little about Dr. Ben Goldacre or about GSK’s trials etc. There again, I am just a member of the public and probably wouldn’t fully understand the ‘medical jargon’ of it all if it were explained to me. That’s ok, because we are talking about ‘prescription only’ drugs here so I can rely on my GP or psychiatrist to fully explain the pros and cons of treatments to me.
That is where the problem becomes really concerning, for, if the pharma companies had been honest with their knowledge and shared the info with doctors, then they, in turn, could be completely honest with me. Once knowledge is withheld, lies are told which work like a bad apple, staining all levels.
The reason WE are fighting is that it is only at our level that the apple is absolutely rotten – we are the level where some patients have died, also at our level some patients’ lives have been ruined, a further number of patients are hooked on these drugs for the rest of their days. Is it any wonder that we are fighting? As for wondering why our obsession with Restoring Study 329 – it is showing EXACTLY why we are fighting; it is concrete evidence of wrongdoing laid bare for all to see. What idiots we’d have been NOT to make a full-blown fuss about it!
Remarkable discourse going on here.
I don’t think Ben is disingenuous in his views, however the problem is his beliefs come across as perhaps somewhat misguided, or dare I say it, ‘misinformed’.
It’s all very well to claim that ‘patients can be informed and then choose’ in regards to side effects of SSRI drugs, but even just in the last few months I have talked to a GP, and a psychiatric registrar, neither of whom knew anything about Paroxetine Study 329, even though both believe in, and advocate for, SSRI’s in the treatment of ‘mental illness’.
The concerning thing is, both of these medical professionals also prescribe SSRI’s on a regular basis. I even gave a copy of the BMJ article on the RIAT 329 study to the GP, and he rather reluctantly skimmed though it, and didn’t seem fazed in the slightest- despite 329 revealing that many teens, young people, and children were put at risk because of it ( some of whom committed suicide, or self harmed). He seemed more uncomfortable that a patient had the audacity to inform him, than reading the contents of the information about the abhorrent study.
The psychiatric registrar said he would google Paroxetine and I told him it might be in his interest to watch the BBC Panorama’s 4 documentaries on Seroxat/Paroxetine too while he was at it, and maybe then he would be properly informed himself on at least one of the SSRI medications.
Ben is right in one thing though, this problem goes way beyond Paroxetine study 329, and the Seroxat scandal. All the SSRI’s can cause similar problems in terms of serious side effects and adverse reactions, not just in youth, but in adults too. If doctors not only ignore study 329, but most of them don’t even know what it is, or that there are vast problems surrounding the trials of the drugs, the pharmaceutical marketing, ethics, loopholes, outcome switching, fraud, corruption, confllicts of interest etc, then what hope of we of Ben’s dream of ‘informed consent’? and ‘shared decision making’?
‘Informed Consent’ about SSRI’s simply does not exist widely in medicine..
One thing the psychiatric registrar did say though, which I found interesting was- that Paroxetine is not prescribed as a first line treatment anymore because of the issues with withdrawal problems…
Now if only someone had told me that when I was prescribed Seroxat first line in the late 90’s- maybe then I would never have needed to set up a blog, maybe then I would have not lost years of my twenties, maybe then I would have been informed?..
But then again, if GSK, or my doctor, had told me the full side effect profile of Seroxat, I probably wouldn’t have taken it…
And if I was informed, and didn’t take it because of the risks, GSK wouldn’t have made over 3 years of profit from my misery would they?…
And this is the crux of the issues of psychiatric drugs, the science used to sell them has never been about informed consent, it’s been about profits…
And it’s still about profits…
You are so right about the science! It seems we first get misinformation supported by fake science (e.g. the original Study 329), and on that basis the docs make up their mind, and years later when the actual truth is exposed, very few people are paying attention any more.
What is needed is a much higher standard of proof required for drug safety before they hit the market.
Also I believe that when companies are charged with fraud, the executives who were part of the decision to mislead the public should also be charged, as individuals.
Paroxetine is still being prescribed as a first line treatment in Canada.
Re: the GP who resents having study information brought to his attention, that is highly revealing about the state of the system and how connected it is to the science [not].
Yes absolutely, it’s quite disconcerting that the GP was more perturbed from being presented with (and thus having to skim though) evidence that a commonly prescribed anti-depressant (Seroxat) is likely killing teenagers (or at the very least damaging them in other ways). The GP, I would say, is typical of this mindset of ‘doctor knows best’. How dare I (a mere patient and non-medical professional) educate him (the godly GP) on the dangers of the drugs he prescribes on a regular basis. I should really just get back in my box where I belong, and leave the expertise to the professionals shouldn’t I? Only, that’s what I did years ago, when I blindly trusted my GP’s expertise- and look where it got me- almost 4 years on a drug which should never have been licensed – never mind prescribed to me. I think that largely, GP’s blindly prescribe SSRI’s and anti-psychotics without doing the slightest bit of research on them and this I find most concerning…
Yoo cannot be accused of having nil investigative qualities nor should they be hidden under a leaf
The Game and The Spy Who Came in From The Cold:
GSK came calling..
“bending the rules”
Excuse me, Sir
This informed choice thing is annoying me. I went to the Dr distressed with my problem hoping he would be able to help me, I trusted his judgement he was a qualified Dr after all why wouldn’t I trust him. I am not a Dr what would I know about medication’s or clinical trials and side effects. Informed choice would surely mean you know everything there is to know about the medication just like the Dr and pharmacist should know but they don’t know everything either.
Not much different to the referendum is it, I didn’t vote because I didn’t understand it all and wasn’t sure what the right thing would be but millions of others voted and regretted their vote afterwards because they didn’t fully understand it all either. Have they made a mistake? Who knows we will have to wait and see now but I see similarities here with informed consent. We don’t get all the knowledge were supposed to get.
Absolutely spot-on Anne-Marie – absolutely the same predicament when thinking of the Referendum and medication use. Not only was there a lack of information leading up to last Thursday’s catastrophe, there were LIES – from both sides. People, who should know better, just throwing out statements in a random, tit-for -tat manner without a thought for the general public who were reeling from all the information floating around in the media.Then came Friday and, not only did we have the shock of a ‘Brexit win’, but also the statement, from one of their own, that the Brexit side should not have said that the NHS would get all the money that, at present goes out to the EU! If the NHS funding fact was incorrect on Friday, then why had it been used over the past few weeks? How many more facts will turn out to be untrue? Probably quite a few.
We could swap the ‘Brexit’ behaviour for that of MANY big businesses in my opinion. Informed choice? I don’t think the words are understood by any of them !
It wouldn’t surprise me if we soon hear that the public chose to leave the EU because they considered both sides of the argument and made an ‘informed choice’. If we do, then we must believe that, in their language, informed choice equals lies. In the same way, pharmaceutical companies and their puppets keep telling us that we are able to make an ‘informed choice’ – how is that possible when we only have one side of the story? We COULD make an informed choice if all the ‘adverse reaction cases’ were acknowledged by big pharma and placed side by side with the perceived positives of the medications. How likely is that? Maybe as likely as the thought that, one day, our world will be free of corruption and companies will freely share their huge profits for the good of the majority rather than stashing it away for the few.
Is defensive the right word? It’s as though the very thought of Study329.org angered and upset him. He seemed to be swatting it away like a large and persistent Zika-laden mosquito. That, I assume is personal, based on his feelings about Dr. H or perhaps one of the others.
I just saw weakness and petulance. I think he did show some concern about side effects and he as much as said he was against the biopsychiatric stranglehold when speaking with Guy.
Johanna quoted the mock utterances by imaginary statin candidates, which were a low point:
Statin-taker: “I want to live!” [uncontroversial]
Statin-refuser: “I don’t want to be medicalized.” [a jab at “Guy?”]
That could just as easily be:
Statin-believer: “Only conspiracy theorists avoid statins!”
Statin-abstainer: “I don’t want to risk my known health for an unknown benefit.”
…just one more thing
In the movie Jaws, Chief Brody, upon learning there was a shark in the Amity waters, erected signs that warned the public. Had he taken the Ben Goldacre approach he would have assumed there was no point in erecting signs because everyone knows that Amity has a shark problem, even those just visiting for the day.
“… But also you have to be really careful about imposing your prejudices on other people”
and Ben, that is precisely why we must agree on a *standard* that will ensure- ONLY- safe, effective medicines are brought to market– and a *procedure* for redacting harmful medicines and misleading published studies that slipped through the cracks.
I suggest that *standard* = rigorous scientific inquiry and transparency-
and *procedure*= thorough reporting , recording and analyzing adverse effects –
The public should demand, based entirely on studies like 329, that a big change in Standard Operating Procedure be immediately forthcoming–
Pharma– the *industry* should never be involved in either the *standard* or the *procedure*-
Operating solely on the profit it can make from doing honest business, —
Pretty common senses when you come right down to it.
Incredible isn’t it all those stupid people who believe that conflict of interest is not only important, but is, in fact, the entire driving force behind the fraud (which B.G. also doesn’t care about), the misleading marketing, the improper influence, all of it.
To B.G.: “Conflict of interest is also what people who don’t understand trial design talk about, and it’s kind-of all that we talk about”.
So anyone who thinks that COI is crucially important, just doesn’t understand trial design? (howzzatt??) And whoever thinks that COI is not taken seriously enough by the (often conflicted) medical regulators just doesn’t get that we are already too focussed on it?
My bright and talented son was killed by medical drug-pushers who believed in the safety and efficacy of these powerful, dangerous drugs. I now believe that informed choice and unicorns have much in common.
How can anyone claim to care about a problem but not its genesis and its manifestations? Without real understanding, one could end up believing that Alltrials offers a solution.
Look what Doctor David Healy did/said/did shown in 2002
There should be no excuses for not watching this 1st of 4 Panorama Programmes about Seroxat aired on 13 October 2002
The Secrets of Seroxat (2002)
When David Cameron decided that Sir Andrew Witty should accompany him to China in December, 2013 despite allegations of GSK Fraud, who was more desperate, Sir Andrew Witty or Mr. David Cameron, Prime Minister, Resigned, to push forward regardless..
How excruciating it was for me and mum to watch Seroxat, 3 months, after..when it was so obvious to us and I told a psychiatrist and a gp and was poo poo’d
‘I want people to like GSK because they trust us, because we invest in trying to find medicines in diseases that they care about, and because we’re transparent,’ he said last year.
ben goldacre @bengoldacre Jun 24
If you want to be on my team you need large, luxuriant hair.
Fiona Godlee talks Statins
“And finally that the complete trial data on statins are not available for independent scrutiny. This should shock people. It continues to shock me.”
Couldn’t believe the reasoning and comments that came out of Ben Goldacre’s mouth – topped off by his parting remark to “Guy” about not imposing his prejudices on others, of course something of which Goldacre is not guilty.
I don’t know the details or venue, but gather Goldacre gave a presentation and there was discussion afterword. He certainly tried hard to avoid anything further about Study 329, and I found his discounting attitude about it, presumably because of what is in his mind the bigger picture, very troubling at the least.
Then he highlighted statin drugs as an example for his case for informed consent – poor choice – and what a messy story that is – statin drugs have been shown to not reduce cardiac events as purported, and in fact carry many side effects for men, and particularly for women (and very few trials or research have been done with female patients) – one serious risk being the development of Type 2 diabetes (and in one research study using non-diabetic men covering a 6 year period published in 2015 patients’ blood sugar control deteriorated, and they were 46% more likely to develop Type 2 diabetes if treated with statin drugs.)
… he goes on to discuss the role of that scale evaluation of levels of depression – HOGWASH
Felt better to read the intelligent comments and questions from others, with great point and sum up from Julie.
I haven’t much knowledge about Ben Goldacre, he was on an episode of QI I watched I believe. He is probably rather intelligent. But he also has to have some empathical issues. How can he brush of the many thousands of people that have been seriously hurt by these meds with “that’s shit, isn’t it”?
And ‘informed consent’ cannot truly exist in pharmaceuticals until they’ve been on the market for many, many years. We are still argueing over certain sideeffects today, 25 years plus after first marketed. Where is the “pharmacovigilance” in that?
Unless we deal with our history, we can’t move on.
Or we can move on, but as with many other similar ‘poisons’ (DDT or Asbestis or Thalidomide), we sooner or later have to help those affected!
But this lack of empathy for its patients is a general thread through the history of psychiatry.
And the problems aren’t confided to coping with the sideeffects, we all want to be treated in a fair and honest way. Not having doctors who haven’t got a single clue about the pharmaceuticals their prescribing. And in that ignorant state they will just diagnose our sideeffects as new diagnoses.
But still they would never admit that they simply don’t know enough about the medicine they’re prescribing.
A ferret-wheel, with me as the lab-rat running as crazy inside of it, just to cope or survive.
From my experience and from what I hear in Ireland, there is very little informed consent going on. Little informed consent on prescribing or by patients.
The numbers of prescriptions are rising – and no-one wants to challenge the opinion of other doctors – or to change the record. (Though some – if believing their own eyes if a patient had suffered an adverse affect – must ‘get it’ and remain silenced).
With regards to what Truthman said, ten years after a horrific withdrawal from Seroxat in 2004 (and the catalyst and a major factor in a subsequent suicide attempt), I sought, at the very least, to remedy a bipolar diagnosis bequeathed to me along with mania, major depression, self harm (minor) and constant suicide ideation by GSK for what effectively was a young broken heart.
I had almost forgotten about the diagnosis until I saw my medical records.
No experience of mania pre-Seroxat or in the ten years since my final withdrawal, never mentioned by anyone (including my GP) until after a session I had with a junior psychiatrist whom I had never met about a very difficult withdrawal – ten years later – from Lexapro. I had reported akathasia as severe anxiety to the JP.
While I can’t say whether or not the fact the senior psychiatrist of my practice knew that I had been taking up a case again against GSK (if the minors cases were allowed) and that I had been seeking a second opinion on the decade old diagnosis (with consideration of the DSMIVV guidelines at the time and now), it was known by the Senior Psychiatrist that I was questioning the old diagnosis.
In trying to change the record to an iatrogenic illness and seeking help for another later brutal withdrawal ten years later from Lexapro and SSRIs altogether after almost twenty years trapped by GSK’s initial assault (armed, I thought, with Dr. David Healy’s advice on Withdrawal and some of the latest research), the Senior Psychiatrist of the practice – whom I’d never met except for those five minutes – concluded from the JP not that I was still severely anxious or still in withdrawal as I suspected and reported – but that I was…manic.
My records, like those of thousands, a false medical picture difficult to remedy. And – at least by my experience in Ireland – destined to cause them further problems – further misdiagnoses and no doubt in suspecting and assessing physical health problems – for the rest of their lives. I’d burn my own post Seroxat records if they can’t be amended and if I could.
When I managed to get over the ’emotional lability’, anger and frustration (could a pathological gas-lighter or Littlefinger from the Game of Thrones have designed a greater system to drive the sane insane?), I didn’t have the wits to later give my GP (who knew well I wasn’t Bipolar) a copy of the BMJ article on the RIAT 329 study. But I did discuss Study 329 & Seroxat, some of the latest research.
What was more frightening was not my GP’s response to my (enmeekened) audacity (there was no other doctor or psychiatrist in the immediate area in rural Ireland and I didn’t want to go from suspected ‘manic’ to confrontational, paranoid or delusional), was that my GP gave me the impression she hadn’t a clue about these drugs she was prescribing. Not a deaf ear, disbelief or doubt in the integrity of the information I was trying to get her to look up. Just not the most basic clue for a GP.
Twenty years on and I felt sick in the stomach looking at people sitting in the waiting room as I had in another room with what was merely a broken heart and a blow to self esteem twenty years ago (but with no internet/online support whatsoever)
On Ben Goldacre – of whom I was an admirer and mainly remain so. I can see his point of view and with the deep rot as uncovered throughout evidence based medicine by Dr Healy.
But in terms of perspective: Thalidomide. Sure it was a bit shit? Ah, but we have others?
It doesn’t detract. For many, the disaffected, it would invite further scrutiny.
I may be wrong, but I think Ben Goldacre also once said that withdrawal wasn’t or couldn’t be horrific.
While it’s somewhat understandable not to want to scare patients who may not suffer as badly as others (or who may get off lightly without becoming psychosomatic) of course, this serves to have a doctor/psychiatrist and celebrity blogger also denying the experiences of other people, even of his own readers – and the dead. And to further indemnify the pharmaceutical companies…
In terms of adverse effects what could be more horrific than your son killing another boy and stabbing himself to death? To find your son hanged or daughter? And the chemical hell their small minds couldn’t not possibly process or endure unfathomable except to those who have experienced it. Murdering – or feeling compelled to murder those you love? And while these may be ‘rare’…plenty could fill him on the horrors where they can find words. I remained disturbed (and after in my distorted world view) in recollecting them – or as they intrude again on me.
But I still think Mr Goldacre has nice hair.
I think it will interest you to follow Katinka and they picked on the wrong person to whom they offered their Cocktails..
The book has been read and endorsed by leading academic and world expert on antidepressants Professor David Healy
“If you think this case is exceptional, think again. Katinka Blackford Newman eloquently and vividly describes a medical horror coming your way soon”
And by Professor Peter Gotzsche of the Nordic Cochrane Centre:
“This book describes in vivid detail how ordinary people can become murderers if they take antidepressant drugs and how psychiatry can destroy people. Its a catching personal testimony about what is wrong with psychiatry, its love affair with unscientific diagnoses and harmful drugs, and its blindness towards the fact that what looks like psychiatric diseases are often side effects of psychiatric drugs”.
Published 7 July 2016
TWO DAYS UNTIL PUBLICATION
I guess it may be very quiet on here for a few days post 7/7 while we all digest Katinka’s book – can’t wait. Also believe that her story is to be part of a Panorama programme on AD and aggression. I believe that another story that we’ve read about here may also be included. Looking forward to that too!
Dee – it seems that wrongful (or suspect) diagnosis are the norm for anyone who has dared to present with adverse reactions to psych. medications. These misleading diagnoses are not handed out by GPs – unlike the prescriptions for the first batch of drugs – but by psychiatrists; this fact, I find even more disturbing. I’ll say again that, in my opinion, SSRIs are not suitable medications to be prescribed by our family doctors. Antipsychotics are prescribed only after mental health assessment – even then, it seems, it’s often VERY difficult to get things right. Is it any wonder, then, that GPs get it so wrong when confronted by distressed patients and a long waiting list for mental health teams support?
For those who have reacted badly to ADs, waiting for an assessment would have resulted in a far better outcome than being put on the SSRI.
Your words “this fact, I find even more disturbing” are so apt – it is so very disturbing that these mis-diagnosis continue day in, day out…..
What I want to know is how can someone like me – saddled with a misleading diagnosis of bipolar 2 when it’s all so very clear that my symptoms (which NEVER included any presentation of mania/hypermania) were caused by a severe adverse reaction to Sertraline (insomnia, extreme anxiety etc) – challenge my diagnosis and get it removed from my medical records.
Although it’s no real big deal for me now – thankfully I’m quite well again with no real permanent damage (except for the remaining weigh gain courtesy of the anti-pyschotic, Seroquel!) – I, nevertheless, feel it’s very unfair that I now have only a one year driving licence – such a pain – and why should I be inconvenienced like this because some idiot psychiatrist can do his job properly.
Any suggestions from blog readers very welcome ……
PS. Me, too, very much looking forward to the imminent Amazon delivery of Katinka’s book.
Jane, so sorry to read your story – especially as regards your driving licence. I am not a sufferer – my son is and I know how infuriating he has found this business of annual re-assessment for the right to drive. It wouldn’t be so bad would it if DVLA moved at the same speed as the rest of us! As things are, by the time you get the new permit its’ almost time to apply for the following year!
Added to this, is the fact that should you require to become an in-patient at a psychiatric unit the DVLA must be informed and you are not allowed to drive for a certain length of time (12 weeks is it?). One psychiatrist had the audacity to tell my son that this idea is good as it may prevent him from wanting to be admitted in the future! Can’t think of anywhere a person is less likely to WANT to be at!
Back to the driving – there is, however, a light at the end of the tunnel. My son has just got his licence now for 5 WHOLE YEARS – and it means the world to him. How they decide who has what, I’ve no idea – his mental health remains roughly the same as it was when only given 1 year. However, I’m leaving that issue well alone – not a boat that I want to rock as we know that their decision is the correct one.
As regards your medical notes, that is not an avenue that I’ve ventured down as yet BUT, if it turns out that his mental health shows no sign of any of the various diagnoses that he’s been given in the past, once he’s successfully come off his present medications, then I shall certainly support him in making enquiries about their relevance and possible withdrawal from his record. At the very least, I would expect to see a paragraph added explaining the irrelevance of those diagnoses.(This would only happen, of course, after he’d made sure that they had been included in the record in the first place!!!!)
Starting on Katinka’s book now!
7th July 2016
I thought it might interest the folk who read these blogs to see the email I sent to Katinka Newman late this afternoon – as follows:
To: Katinka Newman
Well, it arrived on my doorstep this morning (courtesy of that rather kind Mr Amazon) and I’ve not been able to put it down ever since.
It tells my story almost exactly – your story so very well, clearly and honestly – and LOADS of other people’s too.
Thank you, so much, Katinka for writing this.
I have almost a whole library of the usuals: Breggin, Healy, Gotzche, Whittaker etc – all excellent volumes – but it’s your book that really does ‘hit the spot’ and I now feel confident that your book equips me, in a way the others don’t, to confidently discuss with my GP and consultant my case (yet again) with a view to getting them to really understand what happened to me and retract their ignorant (mis) diagnosis – we shall see!
Once again, thanks so much
Very best wishes
The Journal that Stole Lives
The FDA that Stole Lives
The BFG, the movie
Withdrawal from paroxetine can be severe, warns FDA
BMJ 2002; 324 doi: http://dx.doi.org/10.1136/bmj.324.7332.260 (Published 02 February 2002) Cite this as: BMJ 2002;324:260
GlaxoSmithKline, a leading drugs manufacturer, was last week forced to admit that paroxetine, a widely prescribed antidepressant and the company’s best selling drug, can cause severe withdrawal symptoms when stopped.
The Food and Drug Administration in the United States published a new product warning about the drug, and in the same week the International Federation of Pharmaceutical Manufacturers Associations declared the company guilty of misleading the public about paroxetine on US television a year ago.
“This drug has been promoted for years as safe and easy to discontinue,” said Charles Medawar, head of Social Audit, a consumer …
This fell into the GSK lap:
GSK @GSK Jun 30
Why does there need to be a partnership between doctors and #pharma? Professor Makary explains
Sense oh die tubes for life for his, thank you…..:)
“The only point of funding a trial is to get the results, it’s mind-blowing that funders tolerate results being withheld. …(M)aking funding contingent on actually sharing your results, and ideally your data, is vital. If NIH can lead on this, then other non-governmental funders will hopefully follow,” said Dr. Ben Goldacre, a fellow at the University of Oxford and cofounder of The Compare Project and Alltrials.net, which advocates for disclosure of clinical research.
Goldacre has shown that a lack of transparency in trial reporting also has led to frequent discrepancies between the outcome measures specified by researchers at the start of a study, and those they ultimately report. That kind of cherry-picking of results can mislead doctors and patients.
“It’s only by … holding individuals accountable, that we can improve behavior,” he said.
BG, The BFG, the new Roald Dalh, movie; hint…
(The “Skylight Room”)
ben goldacre @bengoldacre 16h16 hours ago
ben goldacre Retweeted NYCSkeptics
Hello people of NEW YORK in July I’m DOING A TALK so COME
ben goldacre added,
The one and only @bengoldacre comes to our monthly lecture series on July 18 to talk about bad science! http://bit.ly/29kA68M #alltrials
Thursday 8 September 2005 01.40 BST
Don’t dumb me down
“Once journalists get their teeth into what they think is a scare story, trivial increases in risk are presented, often out of context, but always using one single way of expressing risk, the “relative risk increase”, that makes the danger appear disproportionately large (www.badscience.net/?p=8). This is before we mention the times, such as last week’s Seroxat story, or the ibuprofen and heart attack story last month, when in their eagerness to find a scandal, half the papers got the figures wrong. This error, you can’t help noticing, is always in the same direction.
“last week’s Seroxat story
..always in the same direction.”
B M G..
First impressions……..midnight musings..
Gosh is Katinka’s final word in her book which arrived by postie van to my van and gosh, gosh
I was planning on a couple of chapters and then tune in Chilcot….six hours later I closed the book
Katinka laid bare herself and her findings and her children and her doctors and her friends and some experts and some non experts and although we might know much of it, it is searingly honest and written straight from the hip…….
It should fly off the shelves to the uninitiated and it is a shame that probably those who really should read it probably won’t….when I bought two copies of Bob’s book, one was for the Clinical Director and then I thought that won’t go down well and dipped oot..
Congratulations to a girl in a million who knows her way around and entwined the personal story with the professional story which packs the punch for Seroxat, SSRIs, Medley’s of Drugs and Prescribing Habits which have killed, maimed and put many in prison
Oscar could have his own little business with his David Healy key rings and Lily could have her own little business too with Tinks as her role model smiley faces
Absolutely, Annie, its Gosh, Gosh, Gosh all the way!
I, too, intended on only a quick look at Katinka’s book yesterday and ended up engrossed from beginning to end.
As I said in my previous post, it really does ‘hit the spot’ in a way all the very impressive, informed and knowledgable medical books written by our heroes (Gotzche, Whitaker and co.) can’t really do – Patient Power rules OK!
I shall certainly be buying extra copies for my GP, Psychiatrist, CPN etc – but as you say, those who really should read it probably won’t!
I can but try!
I wrote a review for Katinka’s book here.
I read it too kept me up til 3.30am couldn’t put it down, it really is a very very good book. From my designer phone lol
Now all my neighbours want to read it too. Was just sitting here with them in the garden talking about your book.
Gosh indeed! Wow, what a read! Very cleverly written – drawing in experts and sufferers as well as her own extensive journey of horror. By reading her story, I feel that I’ve gained a real insight into the reasons behind the behaviours that we experienced when our son suffered his adverse reactions to Seroxat. Unfortunately, he remembers nothing, other than the uncontrollable anger that he felt, of that time. Many a time, whilst reading Katinka’s book, I have found myself marvelling at the way that she can recall the horrific scenes that anyone would prefer to forget and also at the extent of her recovery from those dark days. As she herself says – she is one of the lucky ones. That is true if you are comparing her case with many who died or are still suffering many years down the line. However, she is not lucky at all – in fact, she is unlucky because such a disaster should not have been allowed to happen. and would not happen if only we lived in a less greedy world.
For me, the best part of all was towards the end, when she met the psychiatrist for a coffee to confront him with her new knowledge and conviction – and had him eating out of her hand! I would love to know if Lily and Oscar received their letter of apology from him!
Katinka – I wish you every success, not only with this book and film but with whatever lies ahead for your future. I also wish Lily and Oscar the very best for their future – they have been through very hard times indeed. Your way of sharing every step with them – your highs and lows – and your determination to seek out the truth – will surely prove a good guide for their journey through life.
Andrew Witty from GSK (pictured) and Pascal Soriot from AstraZeneca will be co-chairs of a ministerial working group on life sciences, called the EU steering group
The chief executive officers of the UK’s leading pharmaceutical companies will be advising the government
“We see our opportunity in continuing to be highly influential and to leverage the importance of the MHRA as a leader in the European life science network. Just because we will be out of the formal EU does not mean we can’t be influential in shaping regulatory thinking in the next few years,” he said.
There’s Something about …..
In the second course, David Healy deconstructs the infamous Study 329 as an example of the corruption that pervades modern psychiatric research, with the findings reported in the scientific journals out of sync with the actual data in the study, which, in the case of Study 329, came to light as part of a legal action.
David Healy, MD, FRCPsych
Dr. Healy is a professor of Psychiatry at Bangor University in Wales and a former secretary of the British Psychopharmacology Association. He is considered one of the premier scholars of the psychopharmacology era and has written more about “medical optimization” than any other psychiatrist in the world. Healy is the founder of RxISK.org, a data-gathering and sharing website that integrates research data with clinical expertise and the reports of those with lived experience.
Evidence Without Data Is Not Evidence
Restoring Study 329 is a decade-long effort by researchers to uncover the truth.
Marketing Harmful Drugs to a Trusting Public
In the daily mail today Michael gove the just sacked justice secretary went into Waterstones in Kensington to buy a murder mystery.
Well I hope he bought “The pill that steals lives” and passes it on to Liz Truss the new justice secretary, she may be shocked to learn a thing or two.
How many people are locked up because of the pills?
Did you read in the papers today that they are going to give cows tryptophan ( hope correct spelling!) to boost their serotonin levels which, in turn will raise the calcium levels in their milk and, as ‘happy’ cows produce more milk, I guess there will be more of it for human consumption! Trials already done on 2 breeds ( in Australia was it ?) where they found that this was true for one breed but, in the other, it only affected their blood. What next ! – no need for pills, get your ‘fix’ from the milk you drink! Why do we humans always think that we can do better than nature does?
Flex your apps..
GSK @GSK 15h15 hours ago
GSK Retweeted Caroline Chen
Read the full article at http://gsk.to/29OG6RE
Exclusive: $GSK the first drugmaker to start a trial using $AAPL ResearchKit (app is GSK PARADE) Story with @atbwebb on Bloomberg terminal.
said Rob DiCicco, head of Glaxo’s clinical innovation and digital platforms group. “Certainly you’ve also taken out the site costs, and the costs of having nurses and physicians explaining the studies to them and recording information.”
the traditional clinical trial model also has imperfections, including dealing with missing data
they’re subjected to a series of measures that can be invasive.”
what could possibly go wrong..
Patients who have not seen a gp for over five years will now be struck off their register. Some areas in the country are striking patients off after just a year. I suppose it’s best to go and see them at least once a year even if it’s just to ask them how they are.
The whole point about the revisited Study 329 for me was that it was so meticulously and scrupulously carried out by a team of researchers, in a way that left no wriggle-room for it to be dismissed as ‘bad science’. (Even though some have tried). So it stands as a solid, irrefutable, excellent piece of science, which will be cited in the literature, and, crucially, is likely to pop up on Google. It’s kind of embedded now, which seems to me to be its lasting legacy. That it concerned GSK and paroxetine is secondary – Eli Lilly were just as murderously and indifferently mendacious – and in the UK get much, much less publicity for their callously commercial behaviour.
The difficulties in getting through the hoops to the BMJ must have been incredibly frustrating, but – is anyone outside the ‘Study 329’ inner circle, or people who suffered from paroxetine, truly interested in the fact that someone’s husband was related to someone else who might have hindered the path to publication. It GOT published – which is the really important thing.
No one I know, service users included, had even heard of Study 329 – although several friends were very interested in the RIAT paper – mainly as a concrete example of meretricious Big Pharma mendacity. Hell – I’d never heard of Study 329 until 2013.
I’m playing devil’s advocate to a degree but sometimes I think we have to get real about life outside, where the chemical imbalance theory still reigns supreme, and if the public perceive any problem at all with antidepressants it is far more likely to be along the lines of ‘well he/she wasn’t taking their medication, that’s why they went berserk’.
No one will like me saying this – but I am sometimes reluctant to point people in the direction of David’s blog and Rxisk because, coming at it from a newcomer’s perspective, people don’t understand why AllTrials is suspect, (no one ever slows down and explains, for one reason) what on earth the BMJ did wrong, why Fiona Godlee is Nurse Ratchett, or what on earth is the point of laboriously transcribing an exchange between Goldacre just to show he’s an unreliable twat… And those new visitors will probably never repeat the experience.
Drawing new people in, from places other than those (like me) who’ve been dreadfully harmed is really important: doctors, researchers, scientists, our children, relatives, neighbours, philosophers, writers, journalists. We honestly HAVE to broaden the debate otherwise it simply becomes an incestuous gathering of victims and activists, who already know all there is to know about the damage. If visitors from outside don’t feel welcome, or just don’t understand what everyone’s going on about, then what on earth is the point?
Believe me, I’ve tried getting people to engage with Rxisk and David’s blog but it hasn’t worked – for all the reasons I’ve just stated. But they are surely the truly important people to get on board? Otherwise both forums just end up with ‘I am a victim’ hand-wringing on a big scale which does nothing to spread the message…no one apart from Johanna offered me any help with my ‘Take a Rxisk report to your GP’ request – and that was a challenge thrown out by David, which I didn’t especially want to do, but was willing to give it a go. Similarly, with the Complex Withdrawal site (which I’m deeply interested in, as it might just offer some hope in the future for people like me) – I asked around, as requested, got some small bits of information from my hairdresser and a friend who’s a beautician– but there is no where sensible to put it, and the comments section has (yet again) been mainly co-opted by people offering well meaning but probably useless dietary advice or repeating, yet again, their stories. Surely the challenge was to GET MORE AND DIFFERENT people involved in collecting information?
It seems to me that every single attempt to move forward just dies – because no one slows down long enough to consolidate the practical ideas which might just make a difference to future victims. It’s too late for me, but I’d like to do my best to see that help is there for all those still to come. We can carry on preaching to the converted till the cows come home, but seems to me far more important to educate, persuade, chip away at societal views about antidepressants (non addictive, no such thing as withdrawal etc etc) without making people who take them feel alienated and ashamed.
I’m fed up with bashing away and for anyone who wants to reply ‘I did not like this comment_ – go figure.
Sally, I can feel your frustration coming through loud and clear!
I agree with much of what you say – moving beyond the ‘ones in the know’ to engage the general public is a MASSIVE problem, not only in the context of these two websites but wherever a controversial subject is discussed.
It is difficult to assess, I suppose, but I feel that we are hearing a little more ‘open dialogue’ in the media from time to time these days – no where near enough of course but tiny steps in the right direction maybe?
As for the sites being used to repeat people’s stories – I do feel that, for many, the forums offer a necessary outlet for their frustrations; somewhere where they know that their stories are believed; where else can they share their stories without fear of reprisal? I am sure that those very people share their feelings within their own real-life communities as well as on-line. I feel that the Seroxat trial – when it happens here in the UK – should awaken the general public to the reality of the situation. The ‘sufferers’ concerned have waited YEARS for their day in court – we should rejoice in the fact that, at last, permission has been granted for things to move forward. ( Hillsborough etc. have shown that perseverance CAN win and that truth will out….eventually.)
I do feel that we, the carers, rather than the ‘sufferers’ (dislike that word but useful here!) are the ones who should be pushing the boat out further. Having said that, it is not easy to find ways of doing so. I am sure that we all bring the facts of the situation into conversations at every opportunity – where do we go beyond that? Some of us contact our MPs – I feel that opening their eyes to the realities out here is very important.
Another aspect that I feel would help is to be able to discuss adverse reactions with families who have suffered tragedies but have not realised the connection. Unfortunately, suicides reported in the media are the most probable cases that we hear about. Should we really expect a family, suffering such a loss, to welcome the news that their loss was due to medication?
We may not be moving forward at a recognisable speed here but, at least, we are still moving and the sites DO provide a valuable service for our varying needs.
Yes Sally and Mary, it is a frustratingly complex and confounding problem. The last few years, I’ve read so many blogs, so many ‘scientific’ papers, so many books, and watched so many youtube clips. I know more about this horror than I’d ever have thought possible.
I now harbour a very strong suspicion about why my youngest son has learning difficulties; and in another life years later, I witnessed my new partner transformed from a kind and caring woman into a cold-hearted monster, eyes flashing with murderous intent at me, following an SSRI increase; and yet yesterday I persuaded a community nurse to request that my mother’s GP puts her on a low-dose SNRI to cope with her Parkinson’s-induced anxiety (or perhaps medication-induced).
And I have friends who are degree-educated, read ‘The Guardian’, and listen to Radio 4, and yet when I’ve tried to tell them of what I’ve seen, it is as if I’d claimed I’d been into the Matrix. “You say the drugs changed her – she must have been mad already”, or “Her therapist must have known what he was doing – don’t you do anything to damage their relationship”, or “GSK’s massive fines – well that’s just U.S. litigation for you”. When you feel you are being viewed as a conspiracy theorist, you start keeping quiet instead. The uninformed ignorance of the masses acts like a blanket fog, to suppress what some of us know to be true.
And yesterday, I read about a man in Lincolnshire who shot his wife and 19-year old daughter, before turning the gun on himself; and his neighbours and friends are dumbfounded at his behaviour. We’ll wait for the toxicology report. And also in the news is the Kendall House Report, detailing drug abuse and sexual abuse of young girls, with a psychiatrist undertaking ‘experiments’ or illicit clinical trials; and a second children’s home, Aston Hall hospital, where similar drug and sexual abuse by a psychiatrist occurred, using sodium amytal. Funny how ‘abuse’ always occurs in the past; but legitimate ‘treatment’ always occurs in the present.
It seems that no amount of anti-psychiatry books, blogs, or conferences are able to stem the tide of drugging, which rises year-on-year, and only those directly affected begin to see this ‘silent prescripticide’. But here is an idea:
Those of you who will remember how AIDS first appeared will not forget the first display of the AIDS Memorial Quilt in Washington in 1987 (youtube it; or see http://www.aidsquilt.org/about). Until then, thanks largely to a hysterical media, AIDS had just been something which only affected Rock Hudson and a few gay men.
But as the panels were laid out in the sunshine by the bereaved families, and the names of the dead were recited, it became extraordinarily harrowing and touching at the same time, and made clear how this epidemic was affecting America. Each panel, measuring 6ft by 3ft, was made by the affected family/friends, to represent the life of the deceased. One panel made for a six-month old child included the baby’s soft toys, sewn into the fabric. It now comprises almost 50,000 panels, weighs over 50 tons, and is still being displayed in cities across the US.
So then, SSRI-induced deaths in the UK: The presence of someone like Mick Hucknall would guarantee media interest. Of course, the usual suspects would slither out from their pharma-funded holes to deny everything, but that is only to be expected. The ‘list’ already exists in the form of the ‘antidepaware’ website; but no online representation could ever have the visceral impact of a physical quilt as a memorial to the SSRI deceased.
Just imagine if you will, in the summer of 2018, on the 30th anniversary of the release of Prozac, Parliament Square or the moat of the Tower of London being suddenly covered in thousands of such panels – and call it the ‘Prozac Pattern’. If that wouldn’t raise awareness, I don’t know what would.
Just an idea.
You’ve really got something there Walter – I like your idea. You are so right about the visual impact of such a display – the poppy display comes to mind as another example. Also, just think of the effect of the Bake Off programme – home baking was so ‘old hat’ until the programme came along – now it is full-on trendy.
This year is the 30th. year since the Chernobyl disaster. They have produced small, metal, ribbon bow-shaped lapel pins -purple with the word Chernobyl in gold. Maybe that type of reminder, coupled with your panels, could be produced to hammer home the Seroxat horror (or SSRI horror if preferred) when the time is right.
Walter – we need a leader. I’m pretty sure there will be plenty of willing workers once we know where we are heading.
Thank you Mary. More thoughts: no point in keeping this to people affected in the UK – let’s not be Brexit about this. Take in deaths in Ireland, Europe, the US, Canada, Australia, anywhere and anyone who has lost a loved one to any psychiatric drug.
And not one location – it could be displayed every weekend throughout the summer, at open spaces in London, then Birmingham, Manchester, Newcastle, Edinburgh (coincide with festival), Belfast, Dublin, etc, etc.
Not only would it take a massive amount of effort and organisation; it would also require a degree of concealment; as I imagine big pharma/RCPsych would consider absolutely anything to scupper such an enterprise, even infiltration. But where there’s a will…
Indeed – an adverse reaction to any drug most definitely should count as should all nationalities. Maybe ALL known adverse reactions should be recorded, for maximum impact, rather than deaths alone? My comment regarding Seroxat was in anticipation of the world’s media being ‘on watch’ when the trial finally gets to court – the wait has been long, the path has been steep, so why not celebrate in style when it happens!