Two weeks ago in response to the last post in the Study 329 series, Sally MacGregor added the comment – that features as a post below. It’s spot on. The problem is how to avoid being marginalized, becoming part of a 1%. How to capture the attention of the 99% for whom the meds work just fine thanks. There will be more on this theme over the next few posts.
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 behavior.
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.Share this:
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It is all power to Sally’s elbow that she writes like this –
Although we all probably feel emotionally and physically crippled by our experiences with Seroxat, Olanzapine or everything else thrown at us, it is quite a dangerous game the doctors are playing with us.
And, for what?
What do they get in return?
A ‘few’ patients banging the drum for our ‘freedom of expression’ drowned out by the multitudes who are perhaps too scared, too ill, too weakened to write about it.
Probably one of the most exasperated and frustrated persons on the planet are someone who fights in law courts against Pharmaceutical Companies and their Safe Drugs.
This is why I comment, because Law Courts is the only place to start.
Without Law Courts, we do Go figure…we go figure and figure and figuratively speaking the only people who care about us are our allies on David’s blog.
The doctors tell us to Go…and we Go…and we Go…Figure
It’s the white fluff bunny brigade, those who prefer to post photos of cute animals or their dinner on social media websites. They know it goes on, they know it’s abhorrent but, for whatever reason, they choose not to expose it, sometimes citing, ‘it’s too dark or depressing’.
We could, I guess, all take that route and close our eyes – it takes a lot of time, energy and tenacity to keep at it. It’s a dark world that needs a light shining brightly on it.
This really is a great post Sally.
Sally, each one of us can only do the very best within our capabilities and within our individual situations. We can lead by example, but we cannot force since forced persuasions are short lived, which would leave us standing still.
Those of you who have suffered, and are still suffering, need to keep repeating the horrors and their cause whenever and wherever you are able. When claiming welfare benefits, for example, make sure that, along with the mental and physical restrictions to your life at present, you PLAINLY point out the ROOT CAUSE of these problems. The space is there for extra info – use it to get the message out that these ’cause and effect’ situations are REAL and are LINKED and are creating THOUSANDS OF LOST LIVES which, in turn, costs each and every one of us. We hear so much about the ‘cost of the welfare bill’ to society and yet, the pharma companies are allowed, through greed, to add to the numbers who must rely on benefits, many for the rest of their lives. Doesn’t make sense does it?
We hear so much about all ‘being in this together’ these days – that is so far from the truth as to be laughable. If it were true, then all your stories would be believed and concerns for you would be widespread; assurances would also be in place to put a STOP to these life-destroying occurrences.
All that we can do is to keep chipping away at the massive boulder which stands between us and public acceptance of the situation. In doing so, we must take care not to also chip away at the confidence of those who share their stories here – their stories need to be heard repeatedly lest we forget how widespread this problem really is.
The only thing I disagree with in this post is the statement ‘ for 99% of people the meds work fine for”…
I’m not sure exactly what the percentage is that the meds ‘work fine for’ but I doubt very much that it’s 99%..
It’s an interesting question though, for what percentage do these meds work fine for?
It’s kinda like saying that 99% of drinkers don’t become alcoholics. Does that make alcohol any less poisonous or dangerous?
Some people might be able to tolerate the side effects better than others, does that mean that the meds work better? for those people?
another debate perhaps…
Sally’s post was bang on though…
I also agree with Truthman.
It is not a matter of ‘if’ but a matter of ‘when’ in respect of the wheels of your life falling off.
Show me a person who has been on paroxetine (or any ssri for that matter) for 10 years and i will show you a person who is in a precarious position should they want to get off the drug.
How can we say 99% are ok when the work of Kirsch shows that these drugs are worse than useless.
What these %s should refer to are the numbers of people who raise a voice and complain. ie 1% see through the house of cards, and say ‘NO’ to continual druggery, updoses, double doses, poly-druggery, switches and refuse to swallow baseless verbal bovine excrement anymore.
The other 99% don’t want to ‘rock the boat’ and are unable to ‘un-patient’ themselves.
In ch 8 of Pharmageddon Prof. Healy quotes Venning:
‘ Over 80 % of the reports on the adverse consequences of treatment dismissed as anecdotes have turned out to be correct.’
This was a quote from way back in 1982.
I wonder if this figure is similar in 2016 ?
My guess is its probably closer to 99%. It has to be close to it when one reads:
Professor Gøtzsche: ‘I have estimated, based on randomised trials and cohort studies, that psychiatric drugs kill more than half a million people every year among those aged 65 and above in the USA and Europe. This makes psychiatric drugs the third leading cause of death, after heart disease and cancer. The drugs furthermore cripple tens of millions. There are no benefits that can justify so much harm.’
I agree with Truthman. The numbers are surely far higher.
Coincidentally, there was a relatively recent judgment in Ireland (Kinsella v Rafferty) which gave some interesting percentages from two psychiatrists. The case concerned a woman who had sued her Gynaecologist for negligence and breach of duty, after problems arose following a Hysterectomy operation. She was subsequently diagnosed with an anxiety disorder and prescribed Citalopram. Her husband said the drug turned her into a “zombie” – she was constantly “out of it”.
Interestingly, the judgment specifically referred to treatment, where the psychiatrists were all in agreement – there was no prospect of the plaintiff’s condition being remedied without anti-anxiety, depression medication and (probably) cognitive behavioural therapy. Nevertheless, one psychiatrist stated that, even with adherence to treatment, in at least 50 – 70%, no improvement resulted and there was no return to normal functioning. Another psychiatrist disagreed and said the figure of 70% was ‘too pessimistic’ but agreed that in cases of severe anxiety disorder, the failure rate of treatment was around 50%. A very high percentage either way.
See sections 91-108 of the judgment here: http://www.courts.ie/Judgments.nsf/0/46BD3F1D6363A60680257AD7005B9D1D
Thanks for those stats Leonie..
I think what we need to decipher is what exactly do people mean when they say (or they think, or ‘believe’) that the drugs ‘worked’ for them.
If you take LSD, or MDMA, you might have a good trip, you might have a bad trip, or you might have a good trip at the start, and then a nightmare at the end, or you might just have a trip with good and bad moments.
It’s similar with psychotropics, in that some people have awful psycho-active adverse reactions which can liken the experience to a hellish trip indeed…
Some people also like feeling drugged, it takes them away from their problems, so for some of those people, maybe they feel the drugs worked?
Some people don’t like the feeling of being drugged, or can’t tolerate the side effects so maybe those people would say the drugs don’t work?…
It’s far more complex, of course, than what I have just said, but I think it’s worth discussing….
Having been “in the game” since 2003, working many sides of the street in an attempt to effect change, it can be an exhausting, mind numbing, and discouraging thing. “They” have not only endless resources (deep pockets, politicians bought, media bought, armies of lawyers, and so on) but also the patience and persistence to work always for the bottom line. As for the physicians involved, it is also a bottom line thing, with few exceptions. Corporate medicine itself is set up to be mind numbing – more so than ever before. One’s primary care physician now faces the computer, not the patient, to use one example.
There are pockets here in the States of good investigative journalism – still – though these pockets are fewer in number than ever before. The Wall Street Journal used to do long pieces but these were shrunken when the paper was bought by Rupert Murdoch. The Los Angeles Times has been doing an excellent series on the opioid epidemic and the influence of the likes of Purdue and Pfizer behind it – recently it showcased the new bill that passed both houses of Congress and was signed by the President weakening the powers of the DEA in its attempts to crack down on pharmacies and pharmas that are “misbehaving” regarding opioids.
Yes, blogs such as this one may be places where “we” preach to the choir, but at the very least they exist in a world where most people don’t pay attention because they don’t want to. How many “dark” problems can the average person handle? Most people generally want to look the other way. The only story with legs that I see vis a vis the antidepressants is the issue of it causing suicide/homicide and being a factor in mass shootings and the like. This case, though one would think it had been made, is still panned as a conspiracy theory by many.
Sorry not to have any good suggestions today. Just a thumbs up on all the good work of David, his colleagues and friends.
A close friend died recently of prescripticide. She had no history of depression until she was prescribed Imovane/Zopiclone – a sleeping pill. She was then given Citalopram for the depression. When she told her doctor she thought the Citalopram was making her suicidal, the doctor said it was impossible and increased the dose. The doctor also prescribed an additional two months’ supply of Imovane/Zopiclone. I have the empty container. The doctor chose to ignore my warning emails and the link to RxISK. 99% – no way!
Go Sally! This is just the challenge we need, on so many levels.
“Apathy” is certainly one reason why we don’t get a wider hearing. But I think the larger reason is the Divide and Conquer strategy of the industry — and the ways we sometimes fall for it in spite of ourselves.
Leonie and Truthman are right: There IS a 99% that does not understand or believe what we are saying–but it likely does NOT consist of “people for whom the meds work just fine.” Certainly the truly catastrophic reactions — like Leonie’s son Shane, or Katinka Newman, or Wendy Dolin’s husband Stew — are rare. Most people who have taken these pills really have not experienced anything like that. So they are easily persuaded that “those people” must be hysterical fools (or had a serious pre-existing condition they won’t admit to).
But there are so many effects of these medications that are more subtle. They may only show up after the person has been on “maintenance” medication for years. Or it may be hard to distinguish them from one’s original problem, especially for people who really were in chronic emotional pain and turmoil when they began taking the meds. Sometimes it’s irritability and lack of empathy; sometimes it’s a flatlined sex drive. Often it’s just a pervasive numbness, where the person is not actively suffering but feels no passion, drive or commitment to anything.
This is why people are persuaded to take antipsychotics for depression alone (without any “psychotic” symptoms). As the TV ads for Abilify used to remind us, about 2/3 of us will have “some residual symptoms” of depression “in spite of” taking an antidepressant! Damn few doctors will tell you that this could be “because of” taking an antidepressant.
And if you try to stop the medication, and quickly shift from feeling vaguely joyless to flagrantly miserable? Take it from me: it’s all too easy to believe the doctor when s/he says this proves your brain “needs” the medication to be “normal.” At that point, you will do just about anything to safeguard your supply … and you will lash out at anyone who suggests you give it up. That’s how I lived for over twenty years.
Add to this the fact that some people do feel significant relief from real distress, especially when they are given antidepressants during a personal crisis. And the fact that some people, for reasons we don’t understand, can quit them fairly quickly and easily … and you can see why we have real difficulties understanding each other. Difficulties that the industry is very good at exploiting.
Just as the majority have a hard time believing that a few pills could turn a happy-go-lucky man suicidal … so many “survivors” have a hard time believing that some people feel helped by antidepressants (or at least experience no dramatic ill effects). And some “survivors” who were recklessly medicated for mild or transient problems of everyday life find it hard to believe that others were in really serious distress before they ever took the pills. They may not believe that such feelings exist–or are convinced they never existed before the Age of Medication. “I really think suicide is against human nature,” one earnest survivor explained to me. I hardly knew what to say … except to mumble that it had been with us for thousands of years …
And so we yell at each other, lecture each other, deny one another’s most passionately held truths. And the drug companies laugh all the way to the bank. It’s very hard to break out of this trap, but we have to find ways of doing it. The folks in and around RxISK.org are some of the best, bravest & most thoughtful around. Maybe we can figure it out.
This neatly encapsulates my problem too – we have no data for those who have catastrophic, immediate and sometimes fatal reactions to psychotropics, those who take them for a long time and then experience long-term damage, those who take them for a long time and drop dead (sudden unexplained death) or those who take them for varying lengths of time and have no major side effects and manage to stop taking them without extreme problems…because the information simply isn’t recorded or collected . There is no data and ‘those that be’ do like some figures. Which is why Rxisk is so important.
Of the people I know who are ‘on the tablets’ as everyone says round here, not one has experienced an acute reaction, most are managing life OK now and none are fretting about long term damage. This is possibly because something took them to the doc in the first place, and the fear of going back into a very bad place is enough to keep them swallowing the pills long after the problem has receded. It’s a cunning marketing ploy which trades on the fact that depression is the worst experience people have ever encountered, and they would do anything to avoid the slightest risk of getting depressed again.
I think there are many people out there who believe the drugs can be damaging but I think most people feel it’s a waste of time fighting back. They don’t trust our system to do the right thing and admit something is wrong. I personnel believe that’s why most people don’t bother. It’s the system people do not trust.
Does anyone here think that bending the ears of a prison chaplain might lead us anywhere along the route that seems so bleak at times? The number of prisoners who have mental health problems is, apparently, very high. Going by what we know – i.e. high number of SSRI/psychotropic drug prescriptions handed out – surely it would follow that a good number of inmates must be on SSRIs or psychiatric drugs? If our aim is to make life better for the next generation, then surely we should be trying to awaken every section of society, including those in prison. It is a fairly safe bet that the majority of them know very little of the possible dangers of their medications. It is also a safe bet that those caring for them know no more than they do.
The first prison to be built in North Wales opens its doors shortly. I am quite prepared to contact them, once staff are in place, to find out who their chaplain will be. I would then be prepared to arrange to meet that person to discuss our knowledge and to encourage him/her to share that information within the prison walls and out in the wider society.
I am not suggesting that this route should replace any of the ones already in operation – merely trying to think of sections of society that may be better listeners due to their circumstances . Who knows how many of them are in their present situations due to adverse reactions to these medications in the first place?
It’s a good idea Mary, prisons actually do the best they can. When I was in Holloway I was called in to see a senior nurse who was very concerned I was even in prison. She suspected the medication herself and was horrified I was getting little help and support on the outside. She said she was going to contact my local services to make sure they came to see me in prison and to make sure I had help when on leaving. I was actually very grateful to her for the help she got me at the time. They I believe will listen more than the outside world because prison is one of the last resorts for some people. They want to know why normal services are not working for some.
Thanks for your encouraging words Anne-Marie. The new prison does not open until next year but they are recruiting staff at the moment. I shall keep up with their appointments and see where our facts will best fit the bill.
Here is the short version of my problem with alltrials, along with a few other bits and pieces that might address your concern about alltrials bashing – I am sure people could easily add more reasons to this.
They focus on EBM as the answer to all our problems.
EBM is not fit for purpose. (there are in depth discussion about why in this very blog).
EBM is probably the main thing enabling the denial of harm/side effects.
After a while it becomes clear that people like Goldacre, Rory Collins, Sense about science and a whole lot of others mainly coming out of London, are really no more than an advance customer service department for the current evidence based science industry. ‘Listen to the experts’ is their doctrine and EBM is their god. Anything that contradicts it- like anecdotes of side effects for example, must be ignored or downplayed. That is why they are dangerous if safe medicine is of concern to you.
In other words, what Alltrials proposes will not fix anything, and may well make things much worse.
Nutrition matters because it is linked to the whole statin controversy, which is in turn linked to our dietary guidelines, which are extremely important to our overall health, our need for medicines in the first place and the overall burden on our health service. They are influenced by both the food industry and pharmaceutical industries.
So much hinges on statins. If dietary guidelines change like I expect and hope they will, with sugar and refined carbs replacing fat as the main contributors to heart disease (among many other diseases), then statins will be further undermined. If statins (the poster boy of EBM – Bens words not mine) are further undermined, then pretty much all blockbuster drugs will come under increased scrutiny and the whole EBM dominated orthodoxy will be at risk. Not good for Industry at all but would probably be very good for the rest of us.
Once people work out that current EBM derived dietary guideline are advocating more or less the opposite food stuffs to what they should be when it comes to things like diabetes, it will all be further undermined. This is all ‘in the post’ as they say – food represents the soft underbelly of EBM. This is where the greatest evidence based failures exist and they are well down the road to being exposed. There will be a knock on effect on a few major illness groups that will hurt the pharma industry unless they nip it in the bud…fast. But they can’t – I believe it’s much too late for that.
The problems are fundamental science and ethics ones that need to be tackled from the top – by scientists… Certainly well above me and probably anyone who frequents this blog. It’s not just about anti-depressants, its not just psychiatry, it’s not just medicine, its not food and nutrition, it’s science as a whole and how it is being used to determine safety and effectiveness of everything that is the real problem – and its getting worse not better, spreading into different parts of our lives all the time.
I have a feeling Goldacre/All Trials/Sense about Science’s position will all become clearer next year, starting with the release of his new book and the ‘evidence’ and PR package that will be released along side it.
You can only ever fix anything if you find the root cause/causes. And one of the root causes of this particular problem we all face is the current state of Evidence based science and the ignoring of other types of evidence and information – Things Goldacre et al seem to advocate. The other root cause could simply be capitalism.
Individual trials, COI’s, fraud and downright evilness can all be discussed until we are blue in the face, but it’s all pretty much pointless if we ignore the real problem.
I couldn’t agree more Neil with your last paragraph – we need to look at root causes before being able to make/cause changes which needs a lot of deep thinking around the issues. In the meantime I guess the real red hot matter is what do we do right now, in the situation we face? And one of the small things here is to slow down sometimes and explain, as you have done, what’s wrong with AllTrials and Evidence Based Medicine, which in my experience most of the world thinks are a Good Thing! Thanks.
Sally …I just had a conversation with my friend Martha Rosenberg, who wrote the tragi-comic book “Born with a Junk Food Deficiency” ….it’s about the evils of both Big Pharma and Big Food. She and I have “been on the case” for a long time. I asked her if she had seen any signs of hope. She said two things….one, people were more and more willing to speak up against BigPharma, often mentioning tragedies and disasters that had happened in their immediate families and, two, she was getting more and more requests to do investigative pieces on Big Pharma from media outlets wishing to publish them.
Made me glad to still be “in the game” the little bit that I am…
Very interesting news Tessa – seems as if our feelings that things are ‘on the move’ (albeit at snail’s pace) are, in fact, true. Sometimes feel as if, due to our ears being ‘tuned in’, I am seeing a movement that is imaginary but here is proof – if the press is slowly waking up to the reality of what’s going on then there is hope that the general public will soon follow.
Wonder if this is in any way connected to the fact that the Seroxat group have their day in court next year? Bet there will be some scrambling for rights to THAT story here in the UK!
A further thought about making things like the doubts around AllTrials and EBM clearer for newcomers – David and others have written very good posts in the past – both here and on Rxisk – so maybe include a link or two?
Yes, yes, yes – exactly what’s needed I think. If a newcomer starts wondering about EBM versus DBM or any other issue, can we really expect them to go reading through very many titles in the hope that, maybe, some explanation lies somewhere?
It’s the same type of thing that I had in mind in an earlier comment regarding our experiences – that, of course, would be far more difficult to do. Your suggestion is well worth a try Sally and so simple to do (says she who hasn’t got a clue about modern tech. really!) .
Dept for BEIS @beisgovuk Aug 1
Business Sec @gregclarkmp welcomes @gsk & Verily’s £540m investment to develop bioelectronic medicine in the UK
The Rt Hon Greg Clark MP
Secretary of State for Business,
Energy and Industrial Strategy
Greg Clark Retweeted
Dept for BEIS @beisgovuk Jul 27
Business Sec @gregclarkmp welcomes @gsk’s decision to invest £275m to expand its UK manufacturing sites
The Rt Hon Greg Clark MP
Secretary of State for Business,
Energy and Industrial Strategy
GSK @GSK 8h8 hours ago
We believe we can tap in to the body’s nervous system and treat a broad range of diseases using #bioelectronic meds
Is there anywhere which hasn’t been ‘infected’ by drug companies?
Today’s ‘Healthcare Headline’ sounds like good news for gay men – ‘HIV campaigners win NHS drug battle’. NHS England had said that local councils should provide these preventative drugs, but the High Court ruling claims it is the NHS that is responsible.
So it was with a sinking feeling that I opened the website of the National Aids Trust, to look at their corporate sponsorship page. And how utterly predictable. Abbvie, Boehringer Ingelheim, Bristol-Myers Squibb, Gilead, and more, all listed. Although only 19% of NAT funding is from pharma, there is also ‘pro bono support’ (how much; and what exactly?).
And who is making this PrEP drug? Gilead – WOW! What a coincidence! And it allegedly reduces the risk of infection by a startling 86%, according to the PROUD study. AND – wait for it – it’s been approved by the FDA as ‘safe’! So it must be safe – mustn’t it? The National Aids Trust chief executive said the drugs ‘work’, and they ‘save money’. Bloody miraculous, eh?
Here is a drug with the potential to create its own market, by theoretically offering ‘safe conduct’ to takers, but if it only protects six in every seven men, how can that be good odds? And what if it only reduces risk of infection by 50%? What then? Will we have another HIV epidemic? And if we do, who will take responsibility? All sounds a bit familiar, somehow…
On the surface to most people, it might seem like a victory for the gay community. But to drugs companies, it is just another market to create and to capture, using a ‘proxy agent’. A bit like the CIA really…
No Walter, there is virtually no facet of society that it is free from the pharmaceutical tentacles. They wield enormous influence, that’s why they operate above the law…
A time for change from the Professionals
A time for change from the Pro.fess.ionals
Plaintiffs have plausibly alleged the elements of RICO standing, and GSK has not offered a valid justification for limiting the claims at this stage of the litigation
While many of these issues will resurface in the future, we will not opine on the likelihood of plaintiffs’ success down the road.
We simply hold that it would be premature to dismiss plaintiffs’ well – pled RICO allegations at this juncture
Accordingly, we will affirm the judgment of the District Court
Ofcourse Sally is right, and I have dreamt for quite some time to see other researchers, scientists and professors to join DH to alleviate his burden.
And OK, I have learnt the name of Jon Juireidini by now, that is one more.
And I also share the thoughts of this commentators field, most of us here know very well what a sickening game being played upon humanity by pharmaceutical companies.
But why would ‘outsiders’ listen to our ‘whining’ rather than Big Pharmas “scientific research”?
I personally believe that there is a “quantum world”, not that I have any knowledge whatsoever about it, but I believe Neil deGrasse Tyson who said so on the discovery channel.
But judging by our disagreement with Big Pharma, there might be people out there that knows that “quantum mechanics” is a load of bull crap….
Ove, maybe there are a good few professors etc. who share David Healy’s truths but hide behind their fears. The difference is that David Healy speaks out regardless of others’ opinions – at whatever costs to his good name. Not only does he speak out, he also acts upon his beliefs. It is because of his example that we are able to be brave also – and continue to hold our heads above the parapet without cowering. Onwards and upwards!
Ove and Mary
As comments go, this one hits the spot relative to this Professor in Southampton
TRM123 on August 3, 2016 at 5:31 pm said:
Why is AKATHISIA in inverted comma’s?
This is the most dangerous of the array of toxicities of SSRI’s and evidence continues to be published linking SSRIs / psycholeptic induced suicidality and homicidality to cytochrome CYP 450 genomic variants. This indicates impaired metabolism of SSRIs causing AKATHISIA and it’s catastrophic sequalae. Hence it’s relevance in forensic psychiatry.
I fear that this acute, life threatening, and indeed life destroying neurotoxic, extra-pyramidal movement disorder is poorly recognised and under-diagnosed.
In the UK it is seldom “yellow carded.”
It is perhaps more likely to be misdiagnosed as a Serious Mental Illness and then made worse by detention and enforced further toxicity with SSRI’/SNRI’s and antipsychotics. This diagnostic failure is because these medications, via akathisia, can cause extreme and unusual psychological and behaviour changes dominated by overwhelming agitation.
As Eikelenboom, Lucire and Fogelman published in the Journal of Forensic and Legal Medicine earlier this year: –
“The combination of medication, fluctuating restlessness, suicidality, aggression and toxic hallucination are pathognomonic of akathisia. We cannot find any other diagnosis in medical taxonomy that combines suicidal and aggressive thoughts with medication, nor any other that recedes when the culprit drug has been taken away”.
I just read that 51% of elderly with first episode psychosis experience akathisia when haloperidol (Haldol) is administered.
It’s in a Chapter by Dr Pierre Blanchett (U of Montreal) in the 2012 edition of Hyperkinetic Movement Disorders.
Annie – thanks and double thanks for the link to MIA and the interview with Prof Kendrick – very interesting for me as he’s just down the road from where I live and I’ve heard his name off and on, for years as someone who has been extremely cautious about psychotropics for a long time. Actually, reading the article I think this is an example of a good initiative which we shouldn’t shoot down. OK, his attempt to distinguish between withdrawal and discontinuation is particularly clumsy, but struck me as an honest attempt to grapple with the problem. Maybe we should cut him some slack around his terminology and value the fact that this is – to my knowledge – the first attempt ever to do a trial about withdrawal. One thing that deeply frustrates me is the lack of ‘acceptable’ data and evidence about withdrawal, because no one has ever done the research. So it’s a start which cheers me inordinately! Thanks.
One dead and five injured in London knife attack, mental health problems indicated.
Researchers press American Psychiatric Association to retract a study
.. the most notorious case, GlaxoSmithKline four years ago paid $3 billion to resolve civil and criminal charges of preparing, publishing, and distributing a misleading journal article about the use of its Paxil antidepressant in youngsters. The pill had not been approved for that use and the study cited by federal authorities had been ghostwritten.
University of Pennsylvania
School of Medicine
Department of Psychiatry
Annie- your investigations are second to none and always make very interesting reading!
The sad story of the London killings (mentioned by Anne-Marie) is now described as being a case of ‘mental health issues’. The young person is just 19 apparently – would be interesting to know his medication and the level of support offered to him.
The ‘Southampton professor’ article was very interesting too. High time more information was available about withdrawing from these medications if you ask me. Not sure if I agree with his comments about roughly how long withdrawal should take – I feel that patients need to take it as slowly as they need and not feel any sort of pressure whatsoever as regards length of time taken/ length of withdrawal time – they just need constant reassurance that what they are doing is worthwhile.
Keep feeding us with your findings Annie!
ANNIE>>>> Yes, it would be a nirvana if there was more research. On akathisia or withdrawal, depersonalization or suicidal behaviour, or any of the horrible behaviours/sideeffects associated with SSRI’s.
But you must agree there is ‘common thread’ running through all of what SSRI-debate, it’s been 29 years since their introduction, it’s not likely anything will change now?
Look at the videos of congressional depositions on SSRI’s from the early 1990’s, it’s the same doubts. People standing in the hallways, holding a picture of a loved one they lost to sudden suicide. Experst give testimonials that these drugs are poorly researched and can be associated with the most horrendeous behaviours.
In this sinister world, the 1% has been overseen, and will most likely continue to be overseen.
Ove – it would be bad enough that ‘the 1% has been overseen’, as you put it, if it were only 1% that we are talking about. I fear that the percentage, of those whose lives have been affected in some negative way by these drugs, is much higher – possibly higher than anyone can calculate since the only persons who know of the effects of their use are the individuals taking them. I know of a good few who, on hearing about some of the possible consequences of their use, have said things like “wow, my partner/ sibling/child/friend/neighbour took those and said they felt worse instead of better when taking them. I sure am glad that they stopped taking them.” Those very patients will not be in any calculation other than % of prescriptions handed out. I wonder how many people return their ‘unsuitable’ remaining tablets to their local pharmacy? Or are they just left in a drawer, unused? Returning them – you will be asked for reasons why you’re not using them by the way! – is so much better as it draws the pharmacists’ attention to the fact that we are not prepared to swallow ‘just because the doctor said so’ but will stand up for our rights over ownership of our own bodies, both physically and mentally.
I do not agree that this percentage ( however high or low it may be) will continue to be overseen. I feel that the power of truth is very slowly changing minds in some very high places here in the UK at the moment. The ordinary, fair-minded person’s belief in fair play seems to be overcoming the unfounded ‘rights of riches’ that has pervaded society for so long. Yes, it’s been a long time coming and yes, it has involved a lot of hard work and patience – and yes, for sure, the wait is extremely annoying!
As this author points out..
Who needs John Grisham, huh?
When I come off it cold turkey in 2002, with this behind me, then I feel we have every right to realise that GlaxoSmithKline are behaving badly
Court document shows how a jury, in 2001, found GSK’s Paxil responsible for inducing suicide and/or homicide.
Sir Andrew Witty is gonged and heralded and in control of one of the world’s most lethal drugs
Well Annie – you’ve found another corker of a read! I suppose this one is of particular interest to us North Walians as the BCUHB people that Bob has named in this piece are well-known to us from a different perspective – or should I say ‘were known’ as many of them have now abandoned ship ( or been thrown overboard!). The full accounts of their roles here are not exactly fully divulged to us yet. Let’s just say that they left one almighty mess – but, of course, some (if not all) have now been accepted with open arms in England. They just seem to be doing the rounds since we’ve accepted one from England who didn’t exactly come with a glowing report shall we say!
Bob – thank you so much for showing OUR flag at the top of your story as opposed to the Union Jack. I just wish that what you had to say about Wales was more wholesome! that’s not in any way your fault – you’ve said it as it truly is and no-one can deny that.
Now, to David and Goliath. I feel that both Davids are quite capable of dealing with their goliaths in their own differing ways. I doubt that a sling and a few pebbles would get David Healy very far in his fight but his truth and his relentless energy in sticking to those truths can topple the mightiest of giants.
The biblical David became KING – I wonder what honour may be suited to the present David ?
I agree bobs post was a very good post. It’s terrible the lengths they will go to destroy a case. I’m just glad to see the judge was not falling for any of it. It instills your faith back in the system to allow a fair hearing to go ahead.
The problem surely that we have is that when a loved one says they feel low, anxious, depressed or whatever, most of us feel unsure of what to do and instead of sitting calmly, listening to any worries and trying to lessen the load and rationalise things, we tend to suggest they go and see the GP. The GP, with their 7-10 (normally) allocated minutes, prescribes an antidepressant to make life more bearable. If these drugs had never been discovered, what would the GP do? Possibly if these drugs did not exist, the GP would have more time per patient anyway as there would be less ‘heartsink’ people trailling back and back. My grandfather, a Bart’s trained GP of the old school, would listen thoughtfully, sometimes holding their hand if they did not object, and offer his pink or white pills, which he dispensed himself, and were made of mostly sugar. They were of course placebos but he didn’t spell that out.. He would reassure, and ask them to come back in a few days if they didn’t feel a lot better. Also, his workload was such that he knew most of his patients, their families, their ways of life.
Unfortunately we do now have these wretched medications and we can’t turn the clock back to find more time. To make them obsolete, maybe if politicians are shown how much money would be saved by not using them, by showing how much damage they cause, and how much the NHS is having to pay to clear it up, and how ineffectual they are in any case, possibly then we could change the prescribing habits. I can remember the reaction of a roomful of senior politicians when we and some other bereaved parents, whose offspring had ended their lives after taking the acne drug RoAccutane/isotretinoin (suicide is a listed side effect but not taken literally by many prescribers) said ‘think of the money you could save if these young people were not made depressed by this drug and thus needing long term mental health care’. Money talks. Sad to say, it’s the only thing that could make Government stop these pills being dished out so liberally and dangerously. But we have to put something in their place, at once, for the sufferer, as soon as they feel unwell. So we have to educate caring communities to step up to the plate (and that means as many of us that can) and listen, offer calm reason and support to those who are in distress. No good expecting them to wait weeks or months for CBT etc. Or counselling. They need a trusted buddy to turn to to unpick their concerns with kindness and common sense over a cuppa, and the promise of ongoing listening and friendship till life looks brighter once more. Maybe what I’ve written is unworkable, but surely it’s worth a damn good try?
It seems that MIND is now supporting the work of the police in one area of the UK. It sounds as if it’s making a big difference to the use of police time – I’m pretty sure that it means a whole lot more to the desperate people who dial 999 or 101. I feel that the police ( here in N. Wales anyway) have been having to do the work of social workers and mental health workers for far too long, mainly because of their availability 24/7. Let’s hope that this successful trial is taken up by the whole country. It would be a fantastic first step towards the kind of society that you, Heather, like the rest of us, would love to be a part of.
I couldn’t agree more Heather – I often thought when I was suicidal, all I needed was someone other than my poor, patient overburdened husband to sit and listen (back to listening again) hold my hand, give me a cuddle and pass over the tissues every 2 minutes. (That never happened in hospital from the staff – but was readily available from fellow patients.) And you are so right – money is the bottom line. If it was possible to make a case for every town to have a safe place, just a small house somewhere, for people to go in crisis and get some basic friendly comfort – on economic grounds – it could just make a difference. I never wanted to go into hospital – but I did urgently want to go somewhere where I felt safe until the crisis passed. And it would have relieved the burden on my family enormously. I remember hearing some big bod advisor to the Department of Health on the radio back in 2004/5 saying that CBT had been shown to be cheaper and as effective as drugs – and thinking to myself – now we’ll see some changes and we did. NICE (National Institute for Clinical Excellence) is premised on ‘value for money’ to the NHS ..
I tend to look at where we are cos of what happened to Olly, and how he could have been ‘saved’. I absolutely know, without any doubt at all, that kindness and empathy worked. The NHS are rolling out all these Carer Self Help courses like ‘Moodmasters’ and ‘Mental Health First Aid’ and we’ve done them, also all the fashionable Mindfulness stuff, but the best part of all of them was the bonding up with others who were finding their way through the maze of hopelessness that we’d all come up against. People need people who care, and have time to be there for them. They also need to get it across that sometimes medicines can actually make people worse. A typical example was 2 nights ago when we visited some friends who knew Olly well, and were telling them about books liked ‘Cracked’, ‘The Anatomy of an Epidemic’, and Katinka’s book. A sort of awkward look came across their faces, and they asked us not to talk about antidepressants cos their son and daughter-in-law are on them and the son tried to get off them and couldn’t. There was a feeling of fear and not wanting to hear anything that rocked the boat.
We need safe spaces with warmth, plenty of time, no management tick boxes and guidelines and above all, no judgement by the so far fortunate towards those in distress. Distraction using creativity, helps. Love for each other cannot fail to help. We are all one and the same at heart, it’s just that life has thrown up more difficulties for some than for others, and, as Olly said in his farewell letter, “Please just tell my friends it all got too much to bear”.
I so agree with your comments regarding ‘safe houses’ for mental health patients in crisis. Again comes down to money as we all know but that is coupled also with public opinion. MIND recommends the setting up of such houses – stating that each area should have one. It is so true, as Sally says, that many don’t need a bed in a psychiatric unit but certainly need a bed where there is a willing listener at hand. In our area a house was allocated for such a purpose – it was refurbished and ready to go when a public protest was formed and won the right for the house not to be given the go-ahead. The reason? people were scared that, due to the town’s population being mainly in the ‘retired’ age group, having the ‘safe house’ could bring trouble and fear to the local residents! Yes – not in my back yard syndrome once more! As my son always says – “Don’t these protesters realise that we (distressed individuals) are already here amongst them? Where do they think we are at present then? We’d be a darned sight more likely to be troublesome without support than we would in the safety of a house with staff to support us”. Much work remains to be done in getting Joe public to realise that, at any time and with very little warning, any one of us could find ourselves being the 1 in 4 that suffers with a mental health problem
Heather, they don’t make them like your Grand daddy any more..
There was something ghastly in the water in Scotland when the gp put in writing that my problems seemed to be when my mother came to stay……….she always flew up to stay for two weeks for the school holidays and coincidentally I was cold turkey off Seroxat July and dropped 10 mg off Paroxetine Liquid July, the following year..
I spent years being befriended by the gp and practise nurse, innocently given all their hospitality, me banging on and on about Seroxat and not a murmur was made…..when the Boss is away, the mice will play…
One would think he would have been horrified at their duplicity.
He was horrified at their duplicity by picking up the telephone at exactly 7.00 am abroad time warning me off…
From the minute the Indian doctor stabbed me in the back by sending off his absurd referral with ‘psychological’ problems to a mental hospital having seen me through the birth of my child, assorted ailments and so on, what sort of game was he playing and how incredible were the mental bashings that transpired after this calamitous short note went off…
Who would have thought the gp was so desperate as to telephone the Doctor and Dental Union of Scotland for defence and the clinical director so desperate to telephone NHS Highland for defence…
Katinka’s blog is going from strength to strength with Permanently Stolen, Temporarily Stolen and sadly, from Heather
“With thanks to Heather for sharing Olly’s story to stop other lives being stolen.”
Thanks so much Mary and Annie for your interesting responses. It can only be a good thing if MIND are helping the police with call outs for mental health distress, and anyone seeing Channel 4’s recent documentary following police on a normal night’s work, would realise how desperately unmanageable their workload is becoming, how much they want to help but feel inadequate in so doing. But MIND have had their funding massively cut, and their policy now seems to be to want people not to depend on them but to become ‘resilient’. Not so easy when rendered almost unable to think straight on antidepressants and anti-psychotics.
Picking up Annie’s point, so much damage can be done by ‘little words’ in referrals between doctors, carrying forward batons of incorrect judgment. And funnily enough, when our son Olly was quite obviously being made ill by Seroxat, and the psychiatrist was dismissing his akathisia etc, we approached MIND for advocacy help to beg him to listen, and this was just at the time in 2003/4 when news about Seroxat was making headlines. MIND would not help us, (in denial, just like Annie’s GP) and Olly lived another 11 years, his Notes peppered with ill informed judgments which did not accept that the medications of RoAccutane/ isotretinoin and Seroxat, Escilatopram, Venlafaxine etc had made his life intolerable. My greatest regret is that Olly died blaming himself and his own mental lack of resilience, for causing us worry. A braver, more loving, caring and highly motivated intelligent human being, one would seek hard to find. He left a wish that we do all we can to raise awareness to ‘help others’ like him. I have a lot of ideas on how we can try to do this. I don’t think it can be left to MIND. I has to come from all of us. Working together, writing books, doing documentaries, getting hundreds of MPs all over the country to write with our concerns to Earl Howe and Norman Lamb, hustling for at least a Westminster Hall debate, and bringing in the Press at every opportunity. Maybe even a march and petition to Teresa May who says she cares about mental health. I can accept the loss of Olly by closing my eyes and seeing the pain on his face as he struggled, having been instructed by a psychiatrist to stop Venlafaxine immediately, as he didn’t need it, he was not depressed. He was humiliated and ridiculed by those supposedly treating him in the NHS. There was really no hope, for him to be helped or for us to get him help. We had endlessly and reasonably politely begged and pleaded, but drugs were all that were offered, the panacea for everything. Which made his poor mind give up rational thought. So he is out of pain, and we carry the baton on for him, a dear son, a Stolen Life.
So sorry to read more facts of Olly’s suffering, Heather, and your memories of his pain must be very hard to bear. The fact that he was blaming himself for others’ wrongdoings is also a heavy burden for you. I sincerely hope that sharing such pains with us helps in some little way.
It is indeed regrettable that MIND was unwilling to support you when you called upon them in your hour of need. We found that the mental health advocacy service linked to our local psychiatric unit was our lifeline when at our lowest ebb. That was just before the Seroxat programmes and they, when they aired, answered so many questions for us and for our son. We were lucky – he was taken off Seroxat, after just 3 months, due to the rage attacks that it induced. Unfortunately, he was then put on antipsychotics which, over the years, have been swapped and increased numerous times. He is now, very, very slowly weaning himself off them all (with fantastic support may I add).
The problem with us all here is that, when first confronted with these problems, we felt so lost. The whole matter was so new to us that we didn’t really know who we should listen to or who to trust. I feel pretty sure that we all started off believing our doctors and, later, a psychiatrist. Finding that the professionals were putting themselves way ahead of the reality of their patients’ needs was a real body blow – resulting in our total loss of confidence in the whole system.
Coming back to the link between MIND and the police. I really feel that the link, there when in crisis, could turn out to be the first step for many to start on their road to recovery. I have no idea of Mind’s policy as far as medication safety is concerned – maybe alerting their attention to the difficulties would be an idea? After all, they should be prepared to recognise adverse reactions once they embark on this type of relationship with the public face to face. Their supporting networks, in the community and online, seem to be hitting the spot with users in our area.
I totally agree that we should not be leaving the work to any one section of society and that each and every one of us can and should do our utmost to spread the appeal for change far and wide.
I wrote to Richard Brook about Seroxat and received a most sympathetic reply, when he was based in MIND.
It was such a strong endorsement of my Seroxat suicide that I took a copy along with my letter along with a brief letter in a brown envelope to the Indian Doctor. By then he had employed the part-time lady doctor who was doing her last stint as a gp and lived a long drive and ferry away from this practice and who was put in a sheltered housing complex whilst she dealt with village patients..
Whilst I sat clutching the foolscap envelope to show this particular owner of the practice, he and lady doc came into where I was sitting. It was a cringe worthy moment as they flirted and joked.
He took out the correspondence, gave it a cursory glance and assured me it would be placed in my medical records.
The new owner of our practice came from Inverness on the recommendation of the lady doctor. She had confided in me that she knew ‘someone’ who would be very suitable to run this country practice and he subsequently took over.
Shortly after that he took on Practice/2 in PEI.
Buoyed up with this success with Richard, I then proceeded to have a long meeting with my local MP. He was wonderful and considering he knew little about psychotropic drugs was amazingly supportive.
He wrote to the Health Secretary who sent him a reply from Andy Burnham which detailed the current standing on Seroxat and named David Healy as an expert in this matter.
After that I wrote to the MHRA, their reply was a standard issue insult to anyone’s intelligence. It did not even refer to my personal situation. This was appalling, as any one who fesses up to this sort of thing will know; it is one of the hardest things to do.
So, I had two successes and one fail.
Richard had no choice but to go and went under a huge cloud as the header link describes, but, I was particularly grateful to him at the time as never had nowhere been more significant..
Good point Mary about alerting MIND to side effects and dangers of certain medications. We did go back to see them after Olly died, to talk to them about RoAccutane and SSRIs. They said they would pass our printed information around to other branches, and let us know about responses, but we have heard no more, so I hope they did it.
We have also alerted others like Samaritans and ‘Young Minds’ and the latter were very receptive and helpful.
Having seen how the police are having to cope with so many calls from desperate people in mental distress, you are right in welcoming MIND’s involvement.
And yes, it has helped to write about Olly’s appalling experience, in the sense that I’ve realised more than ever that we are not alone. I think when you are in a crisis situation, you do feel terribly alone, and if I’d known about RxISK at any point before 2012, I might have known how to find a good solution to his illness. Thank you for your kind words of understanding, we really do appreciate them and they have made it easier for us to find a purpose.
I am sure Olga will be much comforted by MHRA response to Bob Fiddaman’s recent correspondence with them
Suicidality and aggression during antidepressant treatment: systematic review and meta-analyses based on clinical study reports
BMJ 2016; 352 doi: http://dx.doi.org/10.1136/bmj.i65 (Published 27 January 2016) Cite this as: BMJ 2016;352:i65
Conclusions and implications for research and practice
We believe our study shows that, despite using clinical study reports, the true risk for serious harms is still uncertain. The low incidence of these rare events and the poor design and reporting of the trials makes it difficult to get accurate effect estimates.
Just one additional point, picking up from what Annie wrote re having contacted Richard Brook who was helpful when at MIND, I must express our concerns about NLP (neuro linguistic programming) being used for those with mental health issues. I see Mr Brook has a Bristol NLP header on his site.. I have read Richard Bandler’s books and find his approach very worrying. I understand there have been suicides where Paul McKenna has used hypnosis on those whose minds were manifesting mental illness. Our son was certainly ‘messed up’ by pharmaceutical drugs, but the final straw for him was when his NHS psychiatrist, who had only seen him for several hours, told him to stop Venlafaxine at once (!) as ‘he was not depressed’ in that man’s snapshot opinion. Any attempts by us as carers, to explain the RoAccutane and Seroxat difficulties, were firmly brushed aside by this man, a Head Trainer, as it turns out, in NLP. Yes, it’s good maybe that he probably dislikes the use of drugs, but even so, he cannot expect withdrawal symptoms not to occur, just because he has a hypnotic personality and doesn’t need to listen to the detailed history. Prior to Venlafaxine, Olly had been on Citalopram etc for a long period of time. Also on Zopiclone. To suddenly be advised to stop everything AT ONCE and, in so many words, ‘wake up and smell the coffee – it’s a beautiful day outside, wake up and embrace it’ is frankly appalling, because the withdrawal symptoms were terrible and when Olly complained about these, the same man humiliated him the following week in front of his patents and the Home Care Treatment Team, and branded him as attention seeking because of his expressed suicidal feelings. Home Treatment was immediately removed from him apparently because ‘he had not co-operated’….despite Olly politely begging for it to continue – he had only had it for about 2 weeks – and promising to do anything to make this possible, whilst we all sat, horrified at the tirade from the psychiatrist, which made no sense whatever. There’s no doubt a lot of good tried and tested self help stuff used in NLP but the bullying ‘I know best, don’t argue with me’ attitude is almost like megalomania and frightening when used by a trusted psychiatrist, and when whistleblowers are gagged for saying so. If people Google the BBC Wales Report into what happened in Pothcawl when NLP was used on army PTSD victims, and doctors begged for it to stop, you’ll see how much damage it can do. I do feel great caution needs to be shown when considering the use of NLP with really distressed patients, especially when antidepressants are making them less able to think straight. I apologise if this upsets anyone.
MARY>>> Of course you are right about the percentages too. My humble estimates are even greater than most, as I consider ’emotional blunting’ and ‘cognitive clouding’, two individual sideeffects that can obscure other sideeffects. I was totally blind to how much of my life was actually just sideeffects. In my numbed up state, I was seemingly OK with having lived the last 17 years single and alone. I was basicly either sleeping or not even wondering why I didn’t care for people around me.
And I was considered the most outgoing and social young man, went along well with people in all situations.
So the sideeffects actually cover up themselves.
Only if a patient were to be slowly ‘guided’, with the help of some therapist or other, they could uncover how different their lives have become in comparison to before SSRI’s.
This is the ‘devious’ side of the sideeffects, not even them who say they feel fine are safe, it might just be that they are ‘numbed up’ enough.
I agree with others: you can’t even make stuff like this up, reality blows fiction by miles here!
The side effects cover up the side effects by the numbing and detatchment. You couldn’t explain it more clearly Ove, people are not even aware they are suffering the side effects unless pointed out to them. If you live alone you are more likely to carry on like that for years without realising.
Certainly I understand the frustrations felt as we advocate for truth and transparency surrounding the approval and marketing of drug products. I share my family’s experiences and my daughter Natalie’s prescribed torture and death simply because doing so might keep others safer. I am under no delusions that the majority of the general public cares. The drug companies don’t care. The regulators and politicians who take corporate money don’t care. I understand this, and it is, pardon the pun, a bitter pill for me to swallow.
Nevertheless, I share my child’s prescribed demise because I believe it can help save others. She meant the world to me, and if I can perhaps “save the world” for even one other family, it’s worth my efforts. Of course we never know whose child/love one our advocacy has saved, but I am confident people have been saved thru advocacy and sites such as RxISK.org.
We know that just because the majority of people believe drugs don’t cause akathisia, depression, prescripticide, etc., doesn’t mean the majority is correct. It is sad to ponder that perhaps public perception and understanding will only change as: 1) more people die from prescripticide and 2) the media accurately covers the real cause of these avoidable deaths.
Further info from this www. who have shared Richard Brook and David Healy who to my knowledge are not affiliated with Deep Trance…:)
Effects of SSRIs
As Dr David Healy writes:
The fact that companies have chose to market them as antidepressants rather than agents that cause agitation is a business decision rather than a scientific matter. It is certainly not one that was “ordained by God.” You could say that the fact that some people who are depressed get better is a side effect.
At extreme levels of agitation thoughts of suicide increase, especially with Paroxetine.
Other side effects include loss of libido, loss of appetite & sleep disruption.
PAUL FLYNN>>>>>lamentable body
Professor Sir Alasdair Breckenridge
Asked whether criminal charges could be brought, Sir Alasdair replies: “That is a possibility.”
Thank you, Richard Brook.
More ‘Golden Nuggets’ from this Site
A. I have been speaking on this issue publicly since about 1991. The most recent lecture I gave was five weeks ago at the university of Toronto. Roughly a year ago I was asked to speak on the issue of antidepressants and suicide by SmithKline Beecham in north Wales, and the interesting thing about this particular lecture was it was made clear to me by the representative from SmithKline Beecham afterwards that they would not be asking me to talk again.
Thank you Annie for posting so much interesting information, particularly the Debate and Paul Flynn’s speech. Also, i do see that Richard Brook has done a great job on raising awareness about SSRIS ‘s and Seroxat in particular. I guess the problem for me with NLP is that it is unregulated and the quality of what is done in its name varies according to who is practising it. I guess Olly was terribly unlucky in the psychiatrist he was suddenly put into the supposed ‘care’ of in Home Treatment, in the 2 months prior to his suicide, who he only met twice, for about an hour each time, but who decided his history was of no importance (including knowing what medication he had been taking since he became unwell 11 years before).
There is surely no way that anyone would not realise that stopping all medication immediately, with no monitored tailing off, would not cause withdrawal symptoms, and then, when a patient reports that he feels terrible, to shout at him and shame him for talking confidentially about his suicidal feelings, seems inexplicable. If this is done by someone believing that NLP bullying methods are being cruel to be kind, then at least close monitoring should be put in place, not removing Home Treatment and saying ‘you have done it to yourself, you have a terrible future’, and leaving them, dizzy and ill, to wait for an OP appt some time ahead, not able to drive any more, too shaky almost to cross the room..
Annie also recently in an earlier post, pointed out the dangers of information, in the opinion of a particular doctor, being passed to new others to influence them. Our son had managed his ‘illness’ (which we now see was due to RoAccutane plus SSRIs), really bravely and well for 11 years. His psychiatrist over that time, had been calm and sensible, and although unable to see that the cause of Olly’s low mood, background agitation/anxiety was medication, he had advised him to pay for a really good psychologist, which he did and with whom he’d worked well for a year. But due to work pressures, his medication was increased which made him too ill to travel and he fell under the care of the local NHS who were over stretched and maybe resented the fact that he’d privately tried to help himself to manage his anxiety. The bigger drug load now rendered him helpless. I see that now, but at the time, we totally trusted that the medics knew what they were doing. He was not allowed to see his old ‘tried & tested’ psychiatrist any more cos he had to cut his workload from 500 to 400 patients. His counsellor said, prior to the new medication, he had been better than they had ever known him. He was so nearly there…if only we had trusted our gut feelings, from the very start. What you and others have posted has been so enlightening for us, thank you.
Dear Heather, he was so nearly there……we know exactly how nearly there he was and how tragic for you. You have my utmost sympathy.
My life was completely and relentlessly overcrowded with the indiscriminate use of their positions whereby each of the individual doctors pushed the boundaries to the point where I had not a chance to recover my health nor a chance to reveal what really happened..
A little compilation for you which may help explain away how all this happens..
A random selection of Shorts to Watch, out of hundreds
God Bless David Carmichael
The Time of Your Life and Richard Brook
Olly deserved so much better, as did all.
Thank you for telling your story.
Isn’t it a shame that there isn’t some way of cataloguing the comments that we leave by topic. They are, of course, all kept as placed under the banner of the post which sparked our particular comments in the first place. My feeling is that if, for example, every comment related to ‘poor awareness/ acceptance of adverse reactions by GP or psychiatrist’ or ‘lack of listening to parents/ carers’ could be gathered together, they would provide a fantastic reference library for future readers. So many of us have suffered the same insults ( to varying degrees) which are written about here and yet, once a new post appears, they ( I imagine) will rarely be read again. This, as Sally explained, causes us to repeat ourselves once we read a slightly different story in a comment. My immediate feeling is always “Yes, we had that as well – you’re not alone”; therefore our repeating is really in sympathy – but so much simpler if we could just say ” Look under such and such a heading for other stories very much like yours”.
I like this suggestion, Mary – have thought the same thing several times myself.
It is my view that, this, and other suggestions in this thread, need to be collated into a written action plan and then implemented – but HOW to go ahead and get this done? The process needs co-ordinating ……
I have felt for sometime now that a ‘forum’ (or some such group) needs to get established and meet up to make these things happen – identify necessary actions and work out how to get them done. I would welcome the opportunity to work alongside those of you who are ‘DH blog commenters’ to try to pull this together.
In my previous career (I’m now retired) I worked on developing and implementing strategies for multi agency partnerships and feel I could put my previous experience to good use, albeit addressing a different subject matter.
I am also involved with APRIL charity (e.g. a recent meeting with the BMA to discuss what they could/should be doing to get GPs to acknowledge adverse drug reactions) – this all resulted recently from me meeting Mille (of APRIL) at Katinka’s book launch) and I am supporting CEPUK in their secretariat role to the APPG (All Party Parliamentary Group) on Prescribed Drug Dependancy – which includes, for example, working out the best way to raise awareness amongst all MPs including preparing template letters for survivors/relatives to send to their own MP.
I am keen to encourage the setting up of a parallel APPG on Adverse Drug Reactions.
I observe that here’s so much happening in all sorts of different ways (website blogs and threads, books galore by academics and now a strong patient voice (Katinka’s) in the media) ……..but, I would suggest, with too much duplication here and there and too much preaching to the converted etc.
I feel strongly that we need to GROUP TOGETHER to avoid duplication, identify what needs to happen to get our message OUT THERE LOUD AND STRONG, identify the GAPS and work out how we implement key ACTION points.
I would be very keen to convene a get together for all those who are interested and able to attend (and e.g.Skype links for those who could not be there) to get a suitable action plan put in place and then, most importantly, implemented.
To coincide all, or at least some of this, with Katinka’s forthcoming Panorama programme, would certainly be beneficial – although, timescale, I fear somewhat challenging!
SO, is anyone out there up for a meet at a geographically convenient location (e.g. London or Birmingham) to help start to pull this together?
Jane, you certainly seem to have the necessary skills for moving things forward in a positive manner as does Heather. My feeling here is that we should not forge ahead without a positive response from David indicating that he would be totally in favour of such a move. Any meeting with whoever and by however many would, obviously, be under the banner of David’s blog. If nothing else, it is simply good manners in my opinion to ensure that we are moving forward in a way that has his blessing. The last thing we want is to make a move forwards and, unintentionally, make a hash of it.
Glad to hear of your involvement with the ‘all party’ group etc. – I think it will be a long time before we see any real changes from them but at least they are listening. They are a small group who are willing to look at both sides of given situations and that is good news. Hopefully, their messages will be shared way beyond their committee meetings. The rest of the House is more likely to listen and be persuaded by some of their own than they are by us ‘outsiders’ I guess!
Totally agree Mary about doing nothing without it’s being requested specifically by Dr Healy. Was just offering solidarity if it turns out ever to be needed, in answer to Jane’s post.
Less of the deference to DH. If I knew what the way forward was I wouldn’t be putting these posts up – I’m in the same boat as everyone else.
David, do we take your comment, then, as a positive to ‘plan as we see fit’ or do we take it as a ‘not in my name’? You have provided the springboard – I just don’t want us to dive off without due care! Your experience greatly outweighs the total of all of ours put together. Whatever we do can – and will – so easily be traced back to this site and your good name. I am sure that I speak on behalf of all of us here when I say that we wouldn’t dream of doing anything which could be detrimental to this site – but mistakes are far too easy to make and once made, so difficult to undo…..unless, of course, we were worth millions!
Please plan as you see fit with my support – you talk about my experience but it seems to me you are the ones with the experience of doctors not listening which is the nub of the problem. I can see you’re right. But it seems none of us have the solution just yet
What a brilliant idea Mary! We are very new to RxsK and in no place really to pass any judgments, but Sally’s first piece which headed up this post, summed things up well for me when she said newcomers (like me) could get bogged down in study 329 and think that the Blog here dealt only with that, important though it is. I think, to find a section where we could describe our experience would be fantastic (but it must be done honestly and carefully, only quoting actual words used or situations definitely experienced otherwise it could call this Blog into disrepute). If in doubt, don’t write it, I think should be the parameter, however tempting.
Writing about what happened to Olly, and reading Leonie’s, Annie’s and Mary’s interesting responses has helped me enormously. But I’m well aware that enough is enough, and also that I may be writing on a too familiar theme, which you regulars have all known for ages. I am linked with a group of 16 parents who all lost their children by suicide to the acne drug RoAccutane/isotretinoin and we keep in touch, but sometimes we are individually feeling so down,angry or frustrated that we don’t always feel able to communicate and hold each others’ hearts up. We have battled Roche, Government, the MHRA and now 4 years on, we sense the utter hopelessness of it all. Nothing will restore our beloved children to us, who were effectively murdered by medications and unenlightened doctors and management systems.So, sharing our experiences by writing them, is all that is left to us. I do this a bit with a Blog on a site dedicated to Olly and his friends. I write stuff I hope will help others in his situation, like promoting Katinka Newman’s book. In the end, communication is everything. As CS Lewis said ‘we write, to know that we are not alone’. Olly was a marvellous web designer – wish he were here to offer assistance :).
So, yes please, let’s have a section like Mary suggests. And thanks too to Annie for all her response too, all so helpful and useful to pass on to our parent group.
Sorry – a bit more to add now, in my learning process: have just been trying to download a RxSK form for a new contact, and came upon the RxISK Blog there, led in by Sally and her struggle with Olanzapine, and then read all the others with Sertralne accounts, both of which our son Olly had been put on weeks before he died, ‘to deal with the terror he was experiencing from immediate stoppage of Venlafaxine,’ (told to do so by psychiatrist).
I am SO shocked, reading all this on the other Blog. The whooshing sound in his head, the terrible dizziness, the hell he went through, all as he described it, all graphically explained to me now, reading others’ accounts, Sally’s in particular.
I’ve mentioned earlier our group of bereaved RoAccutane parents; when we sat in Portcullis House in 2014 round a table with Norman Lamb MP, Earl Howe, Ed Vaisey MP, Sir Nick Harvey (Lib Dep, now ex-MP) Gordon Henderson MP, and a very unhelpful woman representing the MHRA, one proposition put to them was that the Head UK Coroner be asked to bring in a system where all drugs which had been taken over a particular period by the dead (by suicide) person, be listed by each coroner and sent back on a Section 43 report to him, and then he sends it to the Ministry of Justice apparently. As far as we know, nothing further has been done about this. For us, the issue of under reporting of deaths on these drugs was key and in our experience, coroners were not keen to pass this information back. Sadly in the Election we lost some good Lib dem MPs like David Laws and Mike Thornton, whose particular interest was mental health and who spoke at our Debate, as did Richard Drax (Con). Nick Clegg wrote to us, last December, promising to go on with the fight for better healthcare, and this week Norman Lamb is again in the Media bemoaning poor treatment again. Supposing some of the most influential of your group got together and set in place a meeting with Norman Lamb to coincide with Katinka’s Panorama film – make sure it’s booked for really soon after it, and make sure there are good Press releases. In the meantime we could all be blitzing our own MPs with letters from all over UK. Little acorns I know, but words matter, and the present Government has a very small majority. Just an idea….tackling doctors is tricky, but Government is elected to protect the people. GPs are very much driven by Managers now, and they do the MPs bidding. If Owen Smith MP manages to become Labour leader, with his murky connections with a Pharma company, the Tories may be more open to looking at the nasty aspects of Pharma. If Jeremy Corbyn triumphs, he might be an honest ally. Either way, cos of Katinka’s film, it would be good to stand ready to use the advantage, surely…
Heather, please don’t think that I was for one minute suggesting that you should not be using this comment section to repeat your experiences – far from it! In fact, you will see from my first comment on this story that I feel that repeating the stories are important. It’s just that I sometimes feel that we miss opportunities to fully support each other when our comments are scattered across so many posts. All of your suggestions are so relevant – many being along the exact lines of my train of thought. You will find (from recent comments here and on Rxisk) that I am in the process of pestering our MP and – through him – the Health Minister’s Dept. without much luck, as yet, but I’m not finished with them yet! My correspondence was in relation to ‘The Kidnapped Daughter’ post – a British story that should disgust every single one of us. If you’ve not already read it, I recommend that you do. I’m sure you’ll find so many parts of that story are also true of your experiences.
Keep writing by all means, especially since you find it helps in some small way. Sharing comments that you read here with your group of fellow sufferers is also good news to our ears.
Sally writes it as it is – Thank you Sally and Thanku to Dr David Healy for allowing a commentator to have a voice. Sally is right of course…I recall someone close to me who rad part of Pharmageddon and his response after only partially reading it was – OK this is what is happening – what is the way forward – we cannot just keep repeating pain and torment – where to from here?
Sally you have nailed it on the head – where does the vicious Pharma roundabout stop…it stops when we the victims of medical cartel – Pharma abuse who destroy our bodies, our homes, our lives …say No, No More…despite Pharma cartel threatening Governments and Healthcare…we, the patients must still say No, Enough now…get on your way…Big Pharma in the last year threatened UK and Irish Healthcare if they did not get what they demanded they would leave….Please somebody buy them a plane ticket…HSE Ireland and NHS UK are sacrificing the lives of so many good people for the monetary gain of Bad Pharma and shame on Taoiseach Kenny and shame on UK Prime Minister Theresa May and indeed the previous Prime Minister David Cameron who I know from my own personal experience has covered up Pharma and NHS crimes…as so is now today the Lord Mayor elect of London Rt Hon Kadiq Khan…where indeed do we go from here…
Teri, the only way I see to stop it, is to divide the sufferes into two groups. Group A,The ones who have taken the medication and been made ill, and Group B,the ones who are experiencing mental distress, anxiety, depression, and considering going to their GP for help. If B can be clearly and shockingly shown the dangers of side effects from antidepressants and antipsychotics, demand for them will surely go down. This will save the NHS money, which needs to be channelled into helping the already damaged ones. Katrina Newman’s film, in prime viewing time on BBC1 Panorama in the autumn, will be an excellent start.
To understand the ethos of the ‘internal market’ and the fear it’s engendering in doctors who don’t want to conform to diktats, read a book just out called ‘If you want good healthcare, go to see a vet’ by Dr David Zigmond. It’s a very touching and heartbreakingly honest account of things how they were pre 1990 compared with how they are now. To get doctors to bravely admit to the medication mess we are in, is going to be well nigh impossible, as their every move is controlled by Management now and the Art of Medicine is fading away because of it. Money, and as you say, Teri, Governments being under the thumb of Big Pharma, is all that seems to matter – that, and getting a medical result for a patient with the least effort and expenditure of time. So it has to come from the people themselves, and they have to be made aware of the hell and torture and in some cases, death, that’s being regularly inflicted by well meaning (mostly) doctors, who don’t want to step out of line and get penalised for it. I don’t mean to be negative, but, from experience with our own efforts, we feel we will never win with Big Pharma unless the products they are selling become undemanded ( like Thalidomide did). But the guy who got that banned spent his entire life fighting them. We have got to make people wake up. David Healy’s Wall idea is good, but it’s got to be put where everyone sees it, like on a 38 Degrees campaign? The sense of frustration we all feel is beyond words.
I still feel that lots of us writing to our MPs is worth doing. If a sample letter could be downloadable from the RxISK site, easy to fill in personal details and find your MP by postcode on HoC site. They will all end up on Earl Howe’s desk and worry him into a meeting, a confrontation with the MHRA, and best of all, a publicity opportunity. Those alive but damaged should tell their story if they can, those who have died can have their story told by their ‘desperate to save others’ families or friends. What do others think?
I think that getting the message out on 38 degrees is a very good idea – especially as, once you’ve signed a petition, you have requests coming left, right and centre to support others, therefore there would be a fair chance of educating the public and getting many votes all at once. Also, they usually have sample letters which you can use – they even tell you who your MP is just to help you along!
I just don’t know how it could be done for the best – by a small group of individuals or in the name of RxISK. If the former – would we need to check that our message complies with the feelings of others here? If the latter – could we submit ideas to the Rxisk team and hope that they might be the ones to approach 38 degrees and produce a sample letter etc.? I think it certainly should be doable but needs to be carefully planned out first. What does everyone else feel?
Heather, with dearest Respect…I have to say I do not think you have a clue…Read Sally’s post again and if you need to know further of Abducted Lives for Pharma Torture…check out @MarionWomen on Twitter and further links to blogs etc. I agree with Sally – time to step out, speak up and say it as it is…Thank you to Dr David Healy for giving Sally that platform because it is time to step out, speak up and move forward…many will die in the process..many will be silenced..but aren’t we suffering already..Thank you Sally…you are my voice and many others…
Teri, I’m so sorry if I’ve got this all wrong. When I wrote about Sally’s experience, and being shocked, maybe I didn’t explain myself well. I meant that what she wrote made total sense to me and I was shocked and appalled to realise that all the symptoms my son had reported, before he died, were exactly those she describes, but at one point, ignorant and afraid as we were, we wondered if it was the ‘illness’ when in fact, Sally shows me that it was the Olanzapine on top of a cocktail of others.
If my ideas about patient-led protests are also clueless, I again apologise. Of course we need medical backing, but as you say, the Dr Healys of this world are scarce. There is a mistaken belief amongst so many that doctors are gods. They are not. They are just people who’ve studied medicine. I should know, my mother’s family was bursting with them. But they have power and people trust them. It was this trust that was our son’s, and our undoing.
Please put me straight Teri, so I understand where you feel I am missing the point. I am on a steep learning curve here and only too willing to listen.
Have just read a list – on Antidepaware – of the inquests in England and Wales during 2016 which involved medications for depression/antidepressants – 301 of them. I am astounded. 301 lives needlessly lost, 301 families (more if life lost was in a relationship) whose lives have been changed for ever, 301 communities that may well have been shaken by such deaths. 301 individuals probably not adequately supported – but hey, not to worry, 301 less in need of support from now on and the revenue lost in their lack of further prescriptions will soon be replaced by new cases in need of ‘support’. That should keep the pharma companies and mental health service providers happy! IT MAKES MY BLOOD BOIL.
Mary, there are also other sites where relatives of loved ones who died by suicide from prescribed mind alerting drugs, post heartbreaking stories about them. I can’t see why coroners are not agitating for change. It is so obvious that terrible damage is being done. Surely our Justice system should be rated above the lobbying and bullying of Government by Pharma.
I so agree about blood boiling. This situation is like something out of the book ‘1984’. Someone struggles with a stress in their lives, they are placated with a pill that either only puts them in a woolly world where troubles fade away, or in 5 cases out of 6 (my estimate) you pitchfork them into terrifying perceived madness, and if they are very unlucky, lock them there forever. Their relatives look on with mounting fear and horror, fighting to understand what’s happening, and get told effectively to shut up and leave it to the professionals!
An eminent geneticist at Cambridge explained to me once that RoAccutane and other drugs which act on the brain are like keys fitting locks. If you are lucky, the molecular key fits your genetic lock. If you are not, problems ensue. Don’t we just know it!
The FOUR Panorama Programmes are presumably useful evidence in a ‘kangaroo court’ and ended up with a reverse affect.
SSRI prescribing more than quadrupled.
Accordingly, suicides, homicides have gone up.
Panorama FIVE needs to reverse the reverse effect.
My hospital/surgery experience took me through the correct channels of complaint and in a way I was lucky; their defence of themselves did not include forcing anything further on me (meds/analysis/whatever) but this tale below is particularly Harrowing ref. Rxisk Tweet on Rxisk Page because the Tables were Turned and he fell in to an enormous Mouse Trap Forever
Great Blog, D..
1-36 essential reading for grown ups
I am insane..
Mary – your idea for a meeting sounds excellent, and Birmingham for us would be ideal.
Annie’s links giving us more info, are very useful. The Nemeroff connexion in particular. We are coming into this from the RoAccutane/isotretinoin side, (www.ollysfriendshipfoundation.org.uk) and searched for knowledge firstly in 2012 by reading Dr Doug Bremner’s book ‘The Goose that killed the Golden Egg’ in which he describes his own struggles with Nemeroff at Emory Uni, having been threatened with ruin if he came out with his results and brain scans showing how dangerous the acne drug is. Some of our ter of est parents are close to Millie of APRIL.
Like Mary and Jane say, if we can pull all of these groups in together and pool strategy. It would be excellent. Our group of 18 are spread all over UK but I feel sure they’d try to get there somehow. You can see a pic of us demonstrating outside Roche’s Pharma offices in Welwyn Garden City on 24.4.14 which we co-timed with a demo by others in the USA. There are more of us now as there have berm more deaths. On MHRA’s figures, it’s almost one a month (which we think is conservative). They feel that is acceptable, when we consider how many (they say) are helped by the acne drug…
In our own case, Seroxat and other SSRIs plus RoAccutane/isotretinoin damaged our son permanently and drove him into a hell which was for him worse than the prospect of death and possibly oblivion. Like Mary, we are incandescent with frustration that these deaths are still needlessly going on. To meet would be really marvellous. Maybe Dr Healy could add any of us that affirmed interest into a joint email for planning the event? If so, please add us in.
From Sally MacGregor
Late to the discussion – the wall idea sounds great – on your 2nd point David – finding the listening doctors – I agree with all Johanna’s points about the overwhelming difficulty of patients and Rxisk reports. The gentler approach you mention David might work better but I have my doubts. Doctors are not receptive to Rxisk reports. Full stop. I think if there were even a few, we might have discovered them by now?
So, turning the question on its head: do we need to look at what they are willing to consider by way of evidence that a drug might be causing a problem? And then start to listen. Which means asking them, preferably in Starbucks or equivalent, as Jo suggests.
So – if anyone has friends or colleagues in the medical profession that could be a start ? Have the discussion over coffee or lunch. I did just that last night with a couple of friends, one a retired consultant (paediatrics) and one a retired GP. Asked how they’d felt when a patient challenged them, and how they reacted when someone came through their door with information off the internet. The consultant said yes, he’d found it irritating because it somehow cast doubt on his expertise, and undermined the fact that he cared very much about making an accurate diagnosis and getting the treatment right and went home every night and worried about his patients because he cared. Also that he then had to stop the consultation, read the info, and if he thought it wasn’t relevant (actually bollocks) use valuable time explaining why. He was very honest about all that.
The GP was less irritated but said that a patient arriving with a sheaf of printouts an inch thick was very difficult – mainly because there was no way she could sit and read them. She suggested that the best approach was to take one paper/article/( Rxisk report?) only, leave it with the GP – but tell them that they would be making an appointment for maybe a week hence and looked forward to discussing it then – which would probably stop the print-out hitting the wastepaper basket as soon as the patient left the room. I was less successful establishing what kind of evidence was most likely not to end up in the bin – but it’s occurred to me since that for a Rxisk report to be read and taken seriously then medics do need to know what Rxisk is all about first. So maybe it’s a 2 or 3 step process: 1.
Would you look at this website because I’d really like to talk about one of the services offered. 2. This is the information I’ve discovered about my drug/ADR 3. Now you’ve had a chance to read it – what do you think doc?
Would it, for instance be possible to include an ‘introduction for doctors’ section on the site?
And – one thought – if anecdotal evidence (patients’ stories) is likely to be dismissed as poor quality – is there any possibility of writing up any of the Rxisk ones as proper case histories? Perhaps someone else could take on both those tasks?
We are trying to discover medics who listen. It strikes me that listening is a two way process – we have to listen too: (leaving aside for a minute the inherent power imbalance, and the fact that even the most stout-hearted, confident patients become tongue-tied in the surgery). If we are asking for a collaborative relationship we have to be prepared to be patient and accept that opening a doctor’s mind to an idea that might be challenging at best, threatening at worst (the medication you gave me has made me sick not better) will take time and isn’t going to happen in one 7 minute consultation with a tired doc. I propose that we have to be just as willing to listen to the medic, as we’re asking her/him to be. Which will mean actively listening to statements like ‘this medication does work, has no serious side effects and I’m not taking what you’re saying seriously because I’m a doctor/expert and you are the patient” without bursting into tears and rushing out in a fury.
That seems like a complete impasse but maybe it needn’t be – anyone who is trained in mediation or negotiation – especially family mediation – might have some really useful information about how the process works. I know from the small amount I did at work, each side’s implacably opposing views are allowed equal respect before nudging towards a compromise. It will take hard work and, crucially time but if it can be done with one or two doctors then we might learn how best to go about it and the process of broadening out into a network can begin.
Part of the learning process might also involve acknowledging what makes us, as patients, behave in a way that alienates medics. I know in the past, out of frustration and fear, I must have seemed defensive and hostile – not a great basis for encouraging the doc to really listen. Maybe we have to accept responsibility for the fact that hurtling into the surgery waving a piece of ‘rubbish off the internet’, insisting that the doc reads it, do what we want a.s.a.p. and then getting angry and upset when s/he refuses is not a great way to get listened to.
Isn’t it all to do with establishing a working, mutually respectful relationship first – then moving on to being listened to?
I know the hurdles. I wish we had a health system premised on ‘listen to your patient, and always start from the basis of believing what they are telling you’ – but we don’t, for complicated reasons. I believe we have to be pragmatic not idealistic. Work with what we have, not what we wished we had.
Health Committee @CommonsHealth
We have launched a new inquiry into suicide prevention. See the terms of reference here: http://goo.gl/xYK8Sh
Terms of reference
The Health Committee invites written submissions on the following points:
• The factors influencing the increase in suicide rates, with a focus on particularly at-risk groups
• The social and economic costs of suicide and attempted suicide
• The measures necessary to tackle increasing suicide rates, and the barriers to doing so—in particular the Committee will consider the role of:
1. Local authorities and partner organisations, including police, transport police, the rail industry, fire services, schools, youth services, and drug and alcohol services
2. Mental health services and other parts of secondary care, including A&E and psychiatric liaison services
3. Primary care services
4. Referrals from non-statutory services – local support groups, faith groups, carers, friends and family
5. Examples of best practice, including those from other countries
• Media reporting of suicide, the effectiveness of guidelines for the reporting of suicide, and the role of social media and suicidal content online
• The value of data collection for suicide prevention, and the action necessary to improve the collection of data on suicide.
Those making submissions to the Committee are welcome to address any or all of the above points. The Committee would also welcome any other comments on or information about suicide and suicide prevention work which stakeholders may wish to bring to its attention.
Deadline for submissions
Submissions should not exceed 3000 words, and should reach the Committee (through the link below) by Friday 9 September. Oral evidence is expected to be taken in October.
• Send a written submission via the suicide prevention inquiry page
Please be aware that we are unable to respond to submissions or comment on cases individually. If you are in need of confidential emotional support, you can contact Samaritans 24 hours a day by calling free on 116123, or emailing firstname.lastname@example.org.
Suicide rates in England have nonetheless been rising in recent years, reaching 4,882 in 2014, the most recent year for which official national statistics are available.
Dr. David Healy
CBC News and Current Affairs
Tue 12 Jun 2001
DAVID HEALY: Let’s say in the case of Prozac that it causes the problem, it will cause people to commit suicide at a rate of one in 1,000 people who actually go on the drug. To most people here a figure like that, that sounds like a fairly low figure. It sounds like a reasonable trade-off almost. But if 50 million people go on the drug, then that becomes 50,000 suicides which is maybe higher than there has been, but it becomes an awfully big figure. It’s what the FDA call the public health multiplier which is a small hazard distributed among millions of people becomes a big problem.
One of the nation’s most influential psychiatrists earned more than $2.8 million in consulting arrangements with drug makers from 2000 to 2007, failed to report at least $1.2 million of that income to his university and violated federal research rules, according to documents provided to Congressional investigators.
Sarah Alspach, a GlaxoSmithKline spokeswoman, said via e-mail that “Dr. Nemeroff is a recognized world leader in the field of psychiatry,” and that the company requires its paid speakers to “proactively disclose their financial relationship with GSK, and we believe that healthcare professionals are responsible for making those disclosures.”
“due to Healy saying bad things
Thank you for Rxisk Newsletter with talk by Dr. Dee Mangin in Canada, also featured on Rxisk Tweet on Rxisk Page and for new links
Which I enjoyed very much and notice she has also put together:
http://tapermd.org/#/?_k=gan79x for seniors
Also, for new Side Effects of Antidepressants within Complex Withdrawal which we can relate to with sensitivity to Sound and Light and various ME/CFS (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME)
type symptoms which occur long after the drug has ceased and long after the horses have bolted..
There are Abuse and Consent Chapters, also
“Neither industry nor EMA has a concept as to how real-world data can be used after drug approval to allow drawing reliable conclusions on benefit and harm,”
Way to go Julian!
Creating mHealth Disruption
GSK US @GSKUS 1h1 hour ago
Way to go Julian! Named by @PharmaVoice as an innovator for making clinical trials more patient friendly. #2016PV100
*Driven to innovate by Disruption*
Hobbies: Fantasy football
OMG Annie! Contrast this techno approach of (surely) self congratulatory fantasy with the tragic story of Dr David Zigmond, a listener and caring logical unraveller of patients’ problems. Dr Zigmond defied The System, said so, many times, as reported in the British Holistic Medical Assn journals, and was taken before Magistrates and had his small, effective and caring Practice closed down within 3 days of a CQC inspection in July, cos he dealt with patients as people and not as component industrial parts. He is a GP, psychiatrist and psychotherapist all in one. His new book, ‘If you want good personal healthcare, go to see a vet’ is a long read, but so worth it. (Mind you, have a dictionary beside you whilst you do if you are anything like me)…He is not ‘anti meds’ I think, but I get the impression he sees patients as people, not statistical lab mice. I have emailed him to ask him his views on psychiatric medication. He’s probably a bit pre-occupied just now, having been pitchforked into retirement and having to see his broken hearted patients sent elsewhere. He practised in Central London, in Bermondsey. This is what we are up against – the endless technology used to blind Governments with science from GSK and the rest, versus the old time tested and reliable simple common sense ‘listening and hearing with compassion’. Maybe it would be easier all round if we just turned into laboratory rats at midnight and sped off into the beyond in a pumpkin. Rats don’t have a voice, but they do have nasty little teeth……
Heather you have found a real human being here
Did a quick sortie as the title rang bells, a prolific writer with views and love the pic at the end of his website
I doubt he will be upside down for long, he sounds quite the man
Heather, Jane and all other interested parties – I am rather far out of the way here, in North Wales, but would love to be kept in the loop if you both decide to set up a meeting. I really hope that you will manage this. If you fancied a trip to beautiful north wales, I would certainly arrange that!
David – you say that our ‘experience of doctors who don’t listen’ is at the heart of this; personally, I feel that the unwillingness of the general public to question the rise in suicide numbers/ anxiety or depression benefit claim numbers/ teenage stress numbers/ number of antidepressant prescriptions handed out etc. is as big, if not bigger a problem These are numbers that we often see – they should worry us all. They do not need to be seen simply as ‘someone else’s problem’ – they affect each and every one of us. The cost to society is astronomical. The ‘non-listening’ doctor is, undoubtedly, a problem – but only for the ones of us who have witnessed it. The ‘non-listening, non-caring public’ is a problem for us all.
Annie and Mary, I so agree with you both. Isn’t David Zigmond a find! And Mary, we used to live near Lake Bala in North Wales and Olly loved walking in Snowdonia, so you are preaching to the converted. Have just been to see the beautiful Élan valley today. Further south of course.
I totally agree Mary about getting the public to wake up and see what’s happening and refuse to accept it. If we don’t go to our GPs and let them hand out this stuff to us unless there is really honestly no alternative, then maybe they’ll start to take notice. We are the masters of our own destiny, it’s down to us in the end. Maybe in schizophrenia drugs are helpful, but then again, Carl Pfifer did some fascinating work on the influence on vitamins and, I think, copper for schizophrenia but no one looks at this these days, as far as I can see. And look how helpful Vitamin B6 can be for depression. Simple things we could try before resorting to SSRI’s and anti-psychotics. Dr Sarah Myhill, another enlightened human, always used to say ‘give the body what it needs and most times, it will heal itself’. By this she means, good diet, lowering stress wherever possible, etc etc. Easier said than done I know, but so much better than losing our minds. (Please excuse me if I’m sounding simplistic and trite, it’s not my intention, but like us all, I’m just desperate to stop the carnage) .
Well, Heather, fancy that! You know only too well, then, about our fight to keep our language and traditions alive – even in rural areas.
Like you, I do feel that there is, quite possibly, a place for these very strong medications in ‘true psychiatric conditions’ ( if there are half as many of those that are true cases and not induced by medication in the first place!), BUT normal life stresses which have rather overwhelmed a person CERTAINLY ought not to be treated, immediately with them. We cannot blame the individuals – they were in despair; we really have to think hard about blaming primary care doctors – they too are in despair due to lack of sufficient, readily-available services; can we blame the psychiatrists? – not really because, often they are undoing the harm caused by the medications prescribed by others or their ‘professional training’ has not shown them the true picture of mental suffering and how to deal with it. So, round and round we go – looking for someone to blame which gets us nowhere at all. That is one of the main reasons why I feel that we ought to stop the blaming – which, under any circumstance, separates people and try inclusion for a change. That is, tell our stories, yes – truthfully and in full detail but more as circumstantial evidence of what CAN and SO OFTEN DOES HAPPEN rather than as a protest against any section of the medical profession. I love the quote from David Zigmond -“In our urge to treat we do not pause to heal”. ALL of us could do well to take that as our motto because I honestly feel that the situation we are in has as much to do with US as it does with any doctor. No, I do not play down the suffering of thousands of individuals and families – but do feel a huge responsibility in reaching the public at large to spare others the same suffering.
Heather, you speak of ‘alternative’ ways of dealing with problems and the role of vitamins etc. in this. I know that one of my nieces, with others, did trials and then published a paper on the role of folic acid in cases of depression. The result was that, actually, it was hardly better than a placebo (if my memory serves me well – I’m sure I’ll be corrected if not!) but they suggested that there may be something else ( also connected) that could be more successful but no trials on that as far as I can see. I’m sorry that I sound so vague about this – medical jargon and I don’t mix very well! All her papers leave me with very little understanding of their contents to be honest – but this is the only one which has ‘depression’ in its title, hence the interest. Thankfully, there is the ‘plain English ‘ section which suits me very well! The more work that can be done with ‘natural ‘ body needs the better I think – not to replace, necessarily, but as first steps to coping with life.
Our son has been left with ‘voices’ since his SSRI days. None of the antipsychotics have alleviated that problem – reduce the severity over short spells of time, yes, but no better than that in all 14 years of suffering. Roughly a year ago, in desperation, he was seen by a different psychiatrist ( who now supports his reductions of medications) who suggested that he may find joining a Hearing Voices Group of help to him. He found one, and what a difference it has made to his outlook on life. Such a simple answer to a massive problem. The secret? – they LISTEN to each other and SHARE tips of ways to cope. The voices remain – it is his UNDERSTANDING of them that has changed. They meet fortnightly and towards the end of the wait for the next meeting you can often see that he ‘needs’ that meeting much as one may ‘need ‘ a medication. He returns from each meeting restored. With many mental health problems I feel that those three things would do the trick – our ‘modern ‘problem is that we live in a hurry and therefore expect instant remedies for our use in times of trouble. That is bad for us and bad for those around us.
What great news about your son and the Hearing Voices group! He wrote in to the blog about a year ago, saying he had just been to his first meeting… have been hoping to hear that he’s doing well.
“Powerful medicine” does not have to consist of a chemical taken by pill or shot. Very often folks decry the over-medication of life problems but quickly add that for People With Real And Serious Problems, they are essential. I totally understand why they say this — and I’m not anti-drug per se, they can be almost life-saving in a crisis.
But I am one of Those People, and alas, your son is one as well (though I don’t know if he was one before Seroxat). And for most of us, I think, the benefits (which may be underwhelming to begin with) steadily fade as the years go by, while the price we pay slowly and inexorably mounts.
Anyway, give him our best — and would LOVE to hear any news he wants to share about this development. HOORAY!
Thanks so much for those words Johanna. Just to stir the pot! – wouldn’t it be great if those words from a year ago (put here by me – unless it was in his comment on Rxisk around that time), could be put with these words now and hopefully even better news in the future, to be used as a reference point for anyone else at the end of their tether and troubled by ‘voices and visions’?
Prior to his introduction to Seroxat, he had not suffered with mental health issues. A hyperactive, sensitive human being yes – one who always lived for the next ‘excitement’ in his life. The first sign of anything deeper than that was when he came towards the end of his Health and Social Care GNVQ course. He had moved away from home about 6 months previously to start a new home with his fiancée. Although the GP knew this – and, obviously, we all know it’s a life changing event – there was no ‘talking him through the facts’ just a prescription for an SSRI ( due to time constraints I’ve no doubt). From taking the first tablet, he became suicidal. Prescriptions were changed – Seroxat being the 3rd. SSRI to be tried. Despite the obvious ’emotional baggage’ of being a fostered child embarking on a major life-change and desperately wanting to be ready for his next step in education, plus a catastrophic reaction (anaphylactic shock) to a measles jab about 3 or so years previously, all of which were known to the GP, he was put on 30mg of Seroxat .
For that, I still feel bitter – that a person who saw him regularly for an annual checkup for Social Services from the age of 20 months ( plus a few visits in between) did not take into account that, maybe, starting him on a much lower dose might have been advisable.
For a while, I really believed that, maybe, the GP had no idea that such adverse reactions were possible. That opinion changed when he saw a different doctor soon after having the Seroxat removed (his GP being on holiday and an urgent appointment necessary) who said ( I witnessed it as he was in no fit state to explain to the doctor his bizarre behaviours at that time – back at home by then, his relationship in tatters) “I’ve been telling them here for a good while now that SSRIs are dangerous for some patients”. That doctor left the practice a few weeks later – I wonder why!
Enough of the past – let’s concentrate on the present. As well as attending the HV group, he’s also reducing his medications. His aim is to completely remove the Quetiapine and Depakote from his system. This is obviously a very slow process – but is working well. he does suffer quite severely during some of the reductions but then gives himself time to recover before the next cut. His energy levels are slowly improving and his motivation, concentration and mood are also showing more of the real person that we lost all those years ago.
The future? He has accepted that a change of route is inevitable – that becoming a Social Worker is now out of the question, having lost 14 years which would have included training etc. and now feels that something more practical ( where you can leave your concerns at work, not take them home with you) must now be the route to take. He has enrolled on a short course to improve language and maths skills for this September. His aim is to eventually go into retail.
As you can see, things are really changing. It is because of this improvement – which, to me, shows exactly the devastation possible through lack of care in the use of these strong medications – that I am motivated to make sure that the general public are made FULLY aware of the truths as we know them.
Shall share your kind words with him too.
Your son sounds amazingly brave, and how marvellous that he is well on track to an interesting career and future. Maybe not such a bad thing to change from wanting to be a social worker. I was one for a few years but found the frustrations of the job desperate. I wanted to go on to be a PSW to help my dear dad, who was diagnosed manic depressive in 1940 after a very risky heart operation then. But I found that the resources were not available to help those who really needed it. If he enjoys his new work in retailing, he will still cheer people along and make a difference to them by just being himself. Stress is a major component in the daily life of a social worker, and you tend to take it home with you – you so long to help, but often can’t. Your son has come through so bravely and well, with your
What is WRONG with doctors? A woman who is either a malignant narcissist or is suffering from some sort of Munchausen’s goes to see various highly-educated ‘specialists’ and persuades them to undertake unnecessary medical interventions on her own children? And a paediatrician contacts them to say that something is very wrong here? And they choose to ignore her, presumably because once they make their diagnosis, there is no turning back…
Quite rightly, the mother is now serving time, but what of those so-called ‘doctors’? Will they be investigated by the GMC for blatant misconduct? Unfortunately, the David’s Healy and Zigmond are in very short supply, as we well know.
The people who contribute to this forum contain an incredible amount of knowledge and awareness and conviction. And no-one can carry more emotional impact than a bereaved mother. But it needs to be used in a concentrated way which harnesses the synergy.
I fear that appealing to doctors simply makes bridges to those already converted or ‘open’. But the rest – the arrogant, the ignorant, those in it for the money, those who simply could not care, the psychiatric KOLs who act as prostitutes – you’ll get nowhere by trying to talk to them. Many doctors are probably completely unaware about how drug companies contribute to their ‘education’.
It is now almost three decades since Teicher flagged up Prozac suicidality, and they are still able to bury this horror and claim that these pills are ‘safe’. A tolling bell rings out for new deaths every single week. You may do anything whatsoever (within the law) to bring up this horror; but consulting at every step, and worrying about causing offence to anyone, will lead nowhere.
Heather made reference to turning up at a drug company HQ. Just imagine blocking the car park exit of XXX HQ on a Friday at 4PM, and handing out flyers to enraged staff who are desperate to get home for their dinner. Back in the 80s, Greenpeace got climbers to drape huge banners off high structures to raise awareness – imagine that at XXX HQ.
And if anyone has not seen this document, then read it and weep:
Pharma/healthcare do not need to ‘bully’ or ‘influence’ Parliament – they already ‘own’ it…a party within parties, over 220 strong, and with a massive amount of influence. If anyone stands up in either chamber, and tries to talk about drug company influence, with 30 or 40 of these people in that same chamber, how far might that person get before being shouted down as a ‘conspiracy theorist’?
With respect, I believe you waste time and energy badgering doctors or MPs. You have to take the fight to the guilty, and seek to roll back the ‘chemical imbalance’ lie, and all of the other BS which confounds proper healthcare.
Some of the KOLs have produced books which can be bought & reviewed on Amazon. Some of these contain the usual crap about how safe drugs are and why they are good for you. A dedicated ‘Book Club’ of 20-odd people could buy one of these each, and pass them around, then produce 20 well-informed, unique reviews, hitting them with science and facts, about ‘side effects’ and ‘marketing’ and all of the other horrors. Stop them selling their BS.
And a certain private hospital has taken flak this month from a broadsheet newspaper, regarding inpatient deaths & investigations. This hospital made its reputation from delivering ‘respite’ to celebrities who were ‘overtired’ from too much partying (and yes, before anyone jumps in, I know that one or two have had genuine issues). But how does such a ‘business model’ translate to caring for vulnerable children?
Answer; it doesn’t. ‘Warehousing’ of children (at £800 per day each, from NHS!) using whatever drugs you can get inside them, forced medication, forced hair chopping, lack of one-to-one time due to staff shortages (although such shortages were not an issue when it was time to employ force against the children). This organisation is now ‘too big to fail’, so the deaths will continue. But right now, they are feeling the heat, and this should be capitalised upon.
There are cracks in the wall, and they need to be rived at…
Yes Walter, I take on board everything that you say but still feel that, unless we can wake up the general public to what is going on, the battle will be lost.
Take an example of a bully in the school yard. She/he (in my experience, far more likely to be a ‘she’ actually – sorry ladies!) will, by devious means, gather as many allies as she/he can and gang up against a weaker child. When that fun diminishes, for whatever reason, she/he moves on to a different target, either with her/his old gang, or, if they’ve seen the light, with a newly formed backing. On and on it goes. Parents flock to school with complaints about ‘the bully’ – the problem lands on the overflowing plate of the additional needs co-ordinator (me, in a previous life!). If the co-ordinator, obviously after much observation and deliberating etc., then deals with the ‘bully’ or ‘bully and gang’ and expects perfect peace from then on – then they are on a lost cause.
The only way that such a problem can be SOLVED is by spending time with ‘the bullied’ and often with whole classes, improving their skills to stand up to the ‘bullies’. Obviously, you also work with the ‘bully’ to find out the reasons for her/his behaviour and try for changes there.(I dislike the word ‘bully’, by the way, I see them all as ‘victims’ in their differing ways). Parents of the ‘bullied’ often resented the fact that their poor children had to make changes in any way – weren’t we, the staff, there to protect them? I was not taught to ‘protect’ anyone as such, merely to show each individual a way to reach their potential. No one reaches their full potential whilst feeling scared and no-one can show their true abilities if scared of what others may say or do.
This scenario is not restricted to a school playground – it happens wherever we are and whatever age. Yes, let’s stand up to it, let’s protest against it in every possible way but let’s also remember that the problem will only re-ignite elsewhere unless we get a true understanding, by ordinary people, of what is going on. As for MPs Walter, they are PUBLIC SERVANTS and, as such should do their utmost to serve their constituents – even if oppressed by House mates with conflicting ‘outside interests’……..maybe some ‘assertiveness training’ should be introduced there?!
Walter, when organising a Protest, (which we did in April 2014), it’s trickier than one might expect. You have to get clearance from the local police, and there are regulations about obstructing the public highway/thoroughfare. We were not allowed to hinder passers by, employees etc, but we stood behind our banner, and placed on the grass in front of us posies of flowers for each dead youngster, white Ikea lanterns with a name on for each of them and a lit candle, and an A4 size picture of each of their faces with dates of death and age when they died, to hold up on poles. We got there at 7.00 am so those going to work had to walk past us, but we didn’t obstruct their path in any way, and we had our RoAccutane/isotretinoin leaflets available to hand out if people came up and expressed interest. Better than irritating the workers when tired at the end of the day. Roche’s premises were on an industrial estate so the grass verge was not, officially, public highway. The police got us to negotiate with Roche, promising it would be a peaceful protest. Several supporters joined our group of parents. There was apparently a Protest in the USA on the same day, 24.4.14. Afterwards we pinned all our children’s’ photos (in plastic sleeves) to a well placed young tree, so it looked like a totem pole. We arranged the posies around the tree on the grass, reckoning that later that day or the next, Roche employees would be sent to remove them, and hoping they might wonder a little about the shortened lives of these much loved young people. Because we behaved so reasonably, we were invited into Roche (out of the drizzling rain) to talk, so long as I promised we’d be calm etc. and we did thus get the chance to put our case. Obviously it won’t have changed their stance at all but we felt they got the message that we were intelligent, reasonable, but sure of our facts and we told them we were NEVER going to give up our fight for justice for our children and for all the others whose sorry experiences can be read in their hundreds on sites and chat rooms, wishing so much that they had never touched this medication. David Healy asked me if we had read ‘Roche v Adams’. I have now. It is horrifying. I’d like to put it on record, in this Forum, that David and I will never commit suicide. Please remember that if anything should happen to us. We will go on trying to make a difference for the rest of our natural lives, but it’s important to do this with integrity and great care. I think this is the only way to maintain support for our cause and respect for ourselves. This doesn’t mean we shouldn’t set up Protests, it just means that when the Press come along to report them, we show a united and reasoned front and can’t be accused of breaking the law or being unprofessional. Good public opinion is what we need. Get people thinking about what drove us to this.
What a story. Thanks.
This is the ultimate account of a corporate whistleblower whose life was torn to shreds as a consequence. Not only did the European Commission successfully prosecute HLR as a result of Adams’ information, but they stood by as both his and his family’s lives were systematically destroyed. I read this book seven years ago and I still grit my teeth at any thought of Roche, the EC, and especially those god awful Swiss.
You MUST read this book. The more people who know the story, the better. Pharmaceutical cartels aren’t as sexy as Big Tobacco, but Stanley Adams’ ordeal blows even the dramatised Hollywood account of Big Tobacco’s “Insider” completely out of the water.
99%? Yes this seems an unsupported claim. But some anti-depressants do work well for some patients. This phenomenon is not unique to psychopharmacology. For example Amiodarone is a very powerful cardiac drug, with very some unpleasant side effects. Thus it is only prescribed in hospital. However some patients do not experience the side effects such as severe photo-sensitivity.