These words are from David Foster Wallace. I don’t know if he was speaking about the depression he had or the akathisia that antidepressants can cause. Maybe he didn’t know and this contributed to his suicide.
This post needs to be read in conjunction with What to do about Sex on RxISK. This post is about structural aspects to the problems not just of sexual dysfunction and suicidality caused by drugs but all other adverse events also. The RxISK post is about the specific things people can do about a specific sexual dysfunction or adverse event such as suicide.
Structurally Speaking
Here’s the easy bit.
Raising Awareness
Its impossible to argue with the proposals after the last post by Heather, Tim and others to try to raise awareness about akathisia. The word is confusing and it’s difficult not to think as Sally does that its obscurity, almost meaninglessness, has been a godsend to industry
Something like Drug Induced Emotional Turmoil (DIE.T) might have got the message over more effectively twenty years ago but MISSD and others have produced such good material on akathisia already that its not clear that going back is an option.
The tee-shirt ideas are great. I’ve been in touch with Bill James who has produced all of the really striking images we have had on RxISK. It takes a while for images to come to Bill – and this time will likely take longer as the outlines of a song is what has turned up first. There is no reason to wait around till more comes from Bill – quite the contrary the fact something else is happening should encourage more diverse effort. As the message on RxISK and below puts it don’t be put off by experts – even expert artists.
FDA, MHRA, EMA, Health Canada etc
There is no point looking to a regulator to solve problems with any adverse effect on a drug. Their brief is to supervise the wording of drug labels and adverts by drug companies primarily before a drug comes on the market. It is not to ensure that patients or doctors are properly warned before they take a drug.
Being bureaucrats their job is to make sure they have a good reason for doing nothing. This means for instance that there needs to be a hint from an RCT that a drug does something they can point to if politicians ask questions. If a politician asks about akathisia, the regulator can say – ah but if we warn about that we will deter people from seeking treatment and lives will be lost.
This is why they are so vulnerable on the issue of SSRIs for children. There is no benefit they can point to – not even for fluoxetine (Prozac).
Why did RxISK submit a petition to FDA, EMA and MHRA about PSSD? You have to be seen to cover all the bases but there is no expectation that things will change.
Government
Government will never do anything companies don’t want. Even if you were to go on hunger-strike outside Congress or Parliament, it would count for nothing.
In the case of AIDS activists their protests got somewhere with Government and Regulators – primarily because they were asking for politicians to ease the regulations on companies. ACT-UP wanted things made easy for Pharma. This resulted in them getting early access to thalidomide and a host of other drugs that may have killed as many people as the virus did.
Guideline Bodies
Bodies like NICE and others who write guidelines base their recommendations on ghost written articles. They have no access to the data. They invariably recommend the latest high cost drug over superior lower cost but off-patent drugs because if they don’t pharma will threaten to pull out of a small country like Britain – and there are presumably other threats in the US.
The guideline makers are unwilling to share a platform with anyone who might raise the issue of access to data or what they do about ghost-written articles.
The SSRIs and children story is supremely inconvenient for NICE and other Guideline bodies but they don’t have to share a platform with anyone or answer questions from a journalist on the issues so don’t hold your breath.
Journals
Through till 1991, journals carried case reports of adverse events – Evident Based Medicine. These reports contributed more to the progress of medicine than Evidence Based Medicine has done. But following the publication of the Beasley et al 1991 meta-analysis of Prozac trials in BMJ (which showed an increased suicide risks that BMJ reviewers and editor missed) – the which are you going to believe the anecdotes or the data article – journals like BMJ are now scared to publish case reports or anything about adverse events. Besides which reprints of RCT and meta-analyses are so much more lucrative.
See Vampire Medicine and related posts – A Call to Harms.
It takes a brave journal to provide a forum for adverse events – see Villains and Heroes.
Pharma
These are largely marketing companies these days. The research, clinical trials, medical writing, public relations (SAS and SMC) and increasingly pharmaco-vigilance has all been outsourced. There is no-one at home who will understand the question being asked.
Some of the major breakthroughs though have come from people within pharma sending documents to people in the media or others. Or taking the high risk route of filing a legal action against their own company. They may get lucky and get money from it but there are more likely to just lose a job. In general, people working in pharma have done vastly more than politicians, bureaucrats or clinicians to bring problems to light.
For every Schindler though, there are thousands of ordinary folk who by doing a good job (keeping to the rules and following orders) are at least as ethical as anyone injured by their drugs from thalidomide to Zyklon B and on.
Bereaved
There are a large number of people who read these blogs and comment and are desperate to find a way forward who have been injured by treatments or lost loved ones to treatment.
There is also a large number of people, perhaps an even larger number who have been injured by treatment and in particular who have lost loved ones to treatment who have become advocates for more treatment – who will front up programs to pick up schizophrenia or depression or osteoporosis or cancer at the earliest possible stage. If only we’d picked things up in time, everything would have been okay.
This is the side Prince Harry or Camilla Parker-Bowles or Ivanka Trump are always going to end up on – they will all want to spread the good news of salvation through baptism and treatment.
Law
This is where Americans have an advantage. They can take a lawsuit – although its incredibly difficult to do so. Europeans can’t. Winning a lawsuit can make a difference – 20 years later. Tim Tobin won his case against GSK in 2001. The benefits of that win are still making a difference. But for the most part companies have become adept at shutting down any publicity that might stem from a legal loss. Pretty well no doctors have heard that GSK lost the Tobin case or cases against them for dependence on paroxetine or birth defects on paroxetine or even the Dolin case.
NGOs
NGOs from the ACLU to Medecin sans Frontieres (MSF) to Open Society and others are committed to your rights. This is great but in practice they are committed to your rights to treatment so drug companies actually rather like them.
The coin hasn’t dropped for any of NGOs that access to medicines should mean full access to all the information that transforms a chemical into a medicine. When it comes to harms, NGOs at the moment are part of the problem not part of the solution.
Activism
ACT-UP put activism on the map. Its fizzled out. Its not clear that AIDS type activism can play a useful part in terms of raising the profile of adverse events. It hasn’t so far.
RxISK put a much older form of Irish activism on the map – the Reverse Boycott. We called this an AbbVie – Lets Do the AbbVie Again – which may be why it didn’t catch on. Basically this involves getting people to stop writing to companies or regulators asking them to be reasonable and bombarding them instead with reports of adverse events on drugs. Only 1% of the serious adverse events on drugs are reported.
The ideal form of this would involve getting your doctor to submit a report also – this was the idea behind RxISK reporting. The courts cannot ignore reports that have people’s names on them and is very unlikely to be able to ignore reports from both you and your doctor.
Companies dismiss your reports with the phrase – The plural of Anecdote is not Data. Maybe we need a catchy slogan – Corroborates are Compelling. Corroborates are Conclusive. Please suggest
But people seem scared to do this. This is an important discovery – people are scared silly. Their doctors are even more scared. We are facing a Structural Violence that almost no-one is talking about.
APA, RCP, Psych Central
The people who are failing everyone the most are doctors and their professional associations. If the American President of their Psychiatric Association or Medical Association were to make it clear they thought some drug caused a problem, the pharmaceutical companies and regulators would have to act. They’d be trumped.
Why would the President do this? At the time of the 1962 regulations, FDA and other regulators were viewed as small beer – regulating advertisements. The real people regulating medicine and keeping their patients safe were doctors. Who for the most part had a good track record in putting conditions like tardive dyskinesia (1959) or dependence or drugs (1961) on the suicide that antidepressants can cause (1959) on the map.
For those with the time to let the dish go cold, the revenge will be that this ignoring of adverse events is going to put doctors out of business. Just as salt that loses its flavour is useless, there is no point spending money on high cost prescribers if they can’t deliver anything that lower cost prescribers would and perhaps even less than robots soon will.
Social Media
You can’t depend on it. The Spectre of Dissent post fell foul of Facebook. It was removed. If a post threatening to raise the profile of adverse events, even an effort to save children from suicide, ever looks like it might get anywhere, the chances are Facebook or other outlets will find some way to block it. Facebook has 23 community standards – they’re worth a look at. It will always be possible using one of them to limit the spread of unwelcome information.
RxISK has an Akathisia page. In 2016 when it was put up it featured near the top of Google searches. MISSD have produced a great video on akathisia but it has begun to slip down the rankings also. We are being replaced by articles and sites like WebMD and related that focus only on the visible motor restlessness this condition involves. Rather than outright block something – which feels like a Facebook own goal – this is a more subtle way to control the conversation.
Taper
There is a thing called the ZPD – Zone of Proximal Development – that mothers know about. Its means knowing what A to encourage your child to do next to help him get to B and C and then D rather than trying to force him to get straight to D (the way his sister did).
We sometimes think that being reasonable – arranging meetings to talk to the regulators, or those other people we need to keep onside – is taking the A step, after which B and C and then D will follow. They won’t follow. The regulators, and professionals may smile nicely but landing on A makes you an enemy of the people. You will never be let get to B or C, never mind D. We will hang on to the carriages being used to transport you to Auschwitz even when the Army are asking for them to try and shore up the Eastern front against the Russians.
This has led RxISK to Taper MD. It may take 10 years for Taper to begin to make a difference but the trick is to go with the flow. If everyone wants to hear drugs work, and no-one wants to hear they might cause problems, then this is what we talk about.
Let’s get you maximal efficacy – this it turns out means 5 or ideally less than 5 drugs at any one time. Clinicians and patients working together are going to have to perm from among the thousands of possible drugs a winning combination. What the patient wants will be key to this. This is what’s going to get people to D.
What to do about…
Meanwhile, for those trying to get a son rather than a daughter somewhere, you need a bunch of Anne-Maries – See What to do about Sex. People with motivation can move mountains if they don’t sit around waiting for experts or other authority figures to do it for them.
susanne says
It takes great courage to kill oneself -maybe we need a public memorial to all those who have suffered such great harm from prescription drugs.
Have left a comment on Duncan Doubles’ critical psychiatry blog ‘The true situation about antidepressant discontinuation problems ‘ to also draw attention to DH and Rxisk blogs – there is a link to the podcast Mad in America which gives an update on the complaint against the college of psychiatrists. Seems the GMC won’t take it up as the complaint is claimed to be against an institution not individuals – institutions though are obviously led by individuals -but the Charity Commission is an option. The complaint will probably lose but they are asking readers to help keep the issue in the public eye. The college seems to have no shame though and more importantly has funding to continue a propaganda ‘war’ as others have described it on the previous blog. The college has maybe learned lessons from Edward Bernay ,the nephew of Sigmund Freud who has been described as the ‘father’ of mass social engineering through psychologically based propaganda. He was closely connected to the Tavistock Institute which is still connected to the college of psychiatrists and numerous universities, health charities, therapy organisations and the health department. E Bernay used his understanding of psychoanalysis to advise governments and organisations how to manipulate ‘the masses’ (most of us). The masses are revolting – he didn’t predict the internet or the degree of compassion and respect shared amongst those who speak out against one of the most shameful abuses of power in a so called democracy. Give us the evidence, publish the data – the public provided it it – it belongs to all of us..S’cuse another rant.
Bob Fiddaman says
Some good points in this post.
I learned the hard way with the MHRA. My ego got in the way with those particular muppets in as much that I thought I could find a chink in their armour and then make them see the error of their ways.
Three meetings with them benefited them more than I. It was an “appease him” exercise, you know, keep your friends close and your enemies closer.
Regarding Drs, well, they are a younger breed these days, fresh out of med school with all the answers, in fact not many doctors ask questions, unless, of course, they are diagnosing. This trait of theirs is probably responsible for allowing drug company reps to promote drugs for off-label uses. Yeah, doctors will ask questions to try and determine the illness in front of them.
Ironic isn’t it. If they would have asked the Lilly reps back in 1987 more in-depth questions about Prozac then we probably wouldn’t be in this mess today. 5 years on came the GSK reps with Seroxat. Again, the doctors never asked any questions. If they did then they, perhaps would have seen the onset of a cancer growing.
Here we are in 2018. Those Drs of 87 and 92 are part of the reason why we find ourselves in this mess. They accepted the untruths without questioning them. They didn’t see the gifts as unethical, hey, they had studied for ten years at med school so they were entitled to a few perks of the job, right?
They failed to spot the cancer because they didn’t ask questions.
It’s that simple.
Ove says
Oh Yes.
And when the doctors of today gets cornered and faced with questions, they base their reply on the lack of questions of the older doctors.
The drugs were home free the very second they weren’t questioned in the initial years of useage, a decision which is perhaps not easy to blame on the younger generation of doctors.
The drugs now have such a momentum of their own, that it can’t be stopped by almost any instances of safety regulators or advocates like yourself. Doctors, scientists, regulators, journalists and academics all praise the drug.
I often wonder what makes you (and others around this topic) keep fighting, because this “trench” is filled to the brim with thick, stinking mud.
Sally Macgregor says
https://www.theguardian.com/society/2018/jun/20/gosport-war-memorial-hospital-opioid-drugs-policy-inquiry
“Handing over a loved one to a hospital, to doctors and nurses, is an act of trust and you take for granted that they will always do that which is best for the one you love.”
“It represents a major crisis when you begin to doubt that the treatment they are being given is in their best interests. It further shatters your confidence when you summon up the courage to complain and then sense that you are being treated as some sort of ‘troublemaker’.”
“It is a lonely place, seeking answers to questions that others wish you were not asking.”
Seems it takes a Bishop to put into words what all of us here and on Rxisk have been fighting. Yesterday the report into untoward deaths at a local hospital – a couple of miles down the road from where I live and very well known to all in this area – was published. A group of gutsy relatives have been fighting to get at the truth of what happened for nigh on 30 years. We breed tough people round here – they had to fight the medical Establishment who were well supported by the police Establishment – who were all well supported by the State Establishment at national and local level. These weren’t people in well-connected jobs, or with friends in any kind of high place – they were just ordinary folk who refused to give up and they’ve had a hell of a battle. The impact of the Report was such that even May and Hunt were wheeled out to ‘apologise’.
So, it can be done. One small but huge outcome of the Report is that every single document, minutes of meetings, testimonies and records relating to the scandal is available for anyone to read online – no one will have to hunt the info down – there’s a dedicated website. Transparency in action. Maybe a tiny drop in the ocean but it’s damn well there.
Those words made me cry – ‘It’s a lonely place, seeking answers to questions that others wish you weren’t asking’ because they made me think of everyone on here.
tim says
Thank you for this very moving and powerful comment Sally.
“Handing over a loved one to doctors and nurses is an act of trust” —
“It represents a major crisis when you begin to doubt that the treatment they are being given is in their best interests”.
These few words describe those moments of terror and disbelief when those
“doctors” in whom we had placed our trust were prepared to ignore our cry for caution as their enforced olanzapine and fluoxetine rapidly produced cranial nerve lesions.
These are visible changes in the face and head that indicate the emergence of very serious, and likely irreversible brain injury.
“It doesn’t happen on olanzapine” they pompously pronounced, yet (after five days) – it certainly had).
They hadn’t the diagnostic wit or wisdom to differentiate intense akathisia from
“psychotic depression”.
The only pathology present prior to misdiagnosis was an adverse drug reaction.
Your adult child is locked up, and her brain is being irreversibly damaged in front of you.
The injuries intensify day by day.
The more you beg them to see these injuries, the more you are ridiculed and the greater the palpable contempt you face at every visit.
You are indeed thenceforth “trouble makers”, giving the so called “nurses’ free rain to tease, torment, ridicule and destroy.
These words made me cry too Sally, but only inside.
Their chemical destruction of an enchanting and gifted adult child has left no physical tears available.
It is indeed ” a lonely place, seeking answers to questions that others wish you weren’t asking”.
It traumatises us further to think how much of the proposed “Increased NHS funding” will be “invested” in maiming and destroying our children.
annie says
You have described this very well, Sally; all might be interested in the Press Conference given by this remarkable Bishop
https://www.youtube.com/watch?v=DewwZrrPepg
The Panel are of the opinion that it is:
-An Institutional Practise
-The Patronising Disposition of Unaccountable Power
-Putting their own Reputation above the Interests of those asking the Questions
Clearly moving, “It is a journey without destination …
susanne says
It’s heartbreaking news Sally – A phrase which will stick in my mind for ever was stated by James Jones the author of the latest report –
‘The Patronising Disposition of Unaccountable Power’ – how that will resonate with us all.
annie says
PhD dissertation looks beyond published literature to investigate the harms of depression medication
http://nordic.cochrane.org/si
tes/nordic.cochrane.org/files/public/uploads/tarang_sharma_phd.pdf
Cochrane Nordic @CochraneNordic
PhD dissertation looks beyond published literature to investigate the harms of depression medication https://bit.ly/2tnMcEg @TShealthpolicy #sundpol #clinicaltrials #medicalresearch
MSc Tarang Sharma defended her PhD dissertation on 23 April 2018. She studied the effects of selective serotonin reuptake inhibitors (SSRIs) and serotonin-norepinephrine reuptake inhibitors (SNRIs) on suicidality, violence and quality of life based on clinical study reports.
Funding: Laura and John Arnold Foundation, and the Nordic Cochrane Centre.
Principal supervisor: Peter C. Gøtzsche
Primary co-supervisor: David Healy
External assessor: Jørn Wetterslev
This aim of this PhD was to shed light on true effects of SSRIs and SNRIs especially relating to suicidality, aggressive behaviour and quality of life by a series of systematic reviews using clinical study reports (CSRs), instead of journal publications as source documents. This has been accomplished by four research projects and related publications. The first was a systematic review and meta-analysis studying the serious harms of deaths, suicidality, aggressive behaviour and akathisia. The second was a methodological study considering the different statistical approaches for meta-analysing these rare outcomes in order to get more reliable and less-biased estimates for the effects of these serious harms. The third study compared the study drop-out rates and the fourth study looked at the quality of life outcomes using SF-36 and EQ-5D in the trials of SSRIs and SNRIs
Johanna says
The Gosport Hospital story is a horrible one, but thanks Sally for passing it along! I hope it serves as some kind of wake-up call to folks in the UK, before the full force of the opioid painkiller epidemic crashes against your shores. From what I hear the use of opioids is on the upswing over there.
On this side of the Atlantic, some truly wretched news from the Mexican border: Some of the children torn from their parents by Trump’s immigration police have been sent to a private “treatment center” under contract with the government — and forcibly injected with powerful psychotropic drugs. One child has had “ten different pills and shots” while at Shiloh Treatment Center. Including three antipsychotics, plus benztropine which was probably given to control the muscle rigidity and tremors produced by the antipsychotics.
https://www.revealnews.org/blog/immigrant-children-forcibly-injected-with-drugs-lawsuit-claims/
In a strange way, I find the outrage generated by this story to be very encouraging. This is nothing new — it’s the same treatment this country dishes out to far too many of “our own” foster children (especially the black and brown ones!) at for-profit warehouses like Shiloh all over the country.
At least this time, people seem to know instinctively what is going on. Frightened, traumatized children are being drugged to the gills to control “disruptive” behavior — which is a totally natural reaction to what they have been put through! If they’ve been diagnosed with a “mental illness”, it’s strictly for cover. Maybe this is a teachable moment. If people find out how often the same thing is routinely done to kids in their own city, maybe they will start to question it. No matter what NAMI says.
It always seems to take a splashy tragedy to force a little progress. I wish it wasn’t that way. Still, if an everyday atrocity like this finally lands on the front page of the papers, we can’t waste the opportunity. The owner of Shiloh has been called out by name in the Houston Chronicle. The same ought to happen with the psychiatrist who signs off on this madness.
annie says
A terror beyond falling …
David Healy @DrDavidHealy 23h
Someone needs to blow the whistle on akathisia and treatment-induced suicide. Patients (and their next of kin) discuss next steps: https://davidhealy.org/what-to-do-abo
The Deadly Paxil Side Effects: Akathisia, Emotional Blunting and Suicidal Behavior
Extract:
Jurors in the Dolin trial also heard from psychiatrist David Healy, one of the world’s foremost experts on Paxil and drugs in its class, known as SSRI’s (selective serotonin reuptake inhibitors). Dr. Healy told the jurors that Paxil and drugs like it can create in some people a state of extreme “emotional turmoil” and intense inner restlessness known as akathisia, one of several known Paxil side effects.
“People have described it like a state worse than death. Death will be a blessed relief. I want to jump out of my skin,” Dr. Healy said. Healthy volunteer studies have found that akathisia can happen even to people with no psychiatric condition who take the drug.
According to Dr. Healy, “… there’s a bunch of things right at the start [of taking the drug] that the drugs do all of which can contribute to you becoming suicidal.” Akathisia may begin a few days after starting treatment and gradually worsen over the next 7 – 10 days.
Dolin jumped in front of a Chicago Transit Authority train six days after starting treatment.
Akathisia is an on-off phenomenon; a person could be fine one minute, and thirty minutes later feel suicidal. It is also a known generic Paxil side effect that has been shown to disappear after a person stops taking the drug.
As a Rxisk.org blog points out, some of the experiences Bruce Springsteen shares in his book, Born to Run, may actually have been treatment-induced akathisia rather than “agitated depression.” Bruce, having been on antidepressants for the last 12 to 15 years of his life, describes a time he came home after being on the road:
“I had an attack of what was called “agitated depression.” During this period, I was so profoundly uncomfortable in my own skin that I just wanted OUT. It feels dangerous and bring plenty of unwanted thoughts. I was uncomfortable doing anything. Standing …walking …sitting down…everything brought waves of an agitated anxiety that I’d spend every waking minute trying to dispel. Demise and foreboding were all that awaited and sleep was the only respite. During waking hours, I’d spend the day trying to find a position I would feel all right in for the next few minutes. I was not hyper. In fact, I was too depressed to concentrate on anything of substance.
“I’d pace the room looking for the twelve square inches of carpet where I might find release. If I could get myself to work out, that might produce a short relief, but really all I wanted was the bed, the bed, the bed, the bed and unconsciousness. I spent good portions of the day with the covers up to my nose waiting for it to stop. Reading, even watching television, felt beyond my ability. All my favorite things – listening to music, watching some film noir – caused such unbearable anxiety in me because they were undoable. Once I was cut off from all my favorite things, the things that tell me who I am, I felt myself dangerously slipping away. I became a stranger in a borrowed and disagreeable body and mind.”
Emotional Blunting and the Connection to Antidepressant Suicide
Another Paxil side effect known to increase the risk of suicide is emotional blunting. This is also a well-recognized side effect of drugs in Paxil’s class, one that others have referred to as apathy or emotional indifference.
Dr. Healy told the jurors in the Dolin trial that emotional blunting, combined with akathisia, can lead to a mental state in which an individual has thoughts of harming themselves or others, but is “numbed” to the consequences of their actions. Drugs in the Paxil class can also cause someone to “go psychotic, become delirious,” Dr. Healy explained.
22 individuals who committed suicide during the Paxil clinical trials. Sixteen of the suicides were violent in nature, including multiple suicides using firearms.
https://www.baumhedlundlaw.com/prescription-drugs/paxil-injuries/generic-paxil-suicide-lawsuit/
“It’s a drug-induced reaction, a compulsion to kill yourself, which again, I’ve interviewed people who have survived these attempts. So, I refer to them as a paroxetine-induced accident, not a suicide. It’s paroxetine. It’s the label that didn’t warn that is the cause.”
Harvard psychiatrist and SSRI expert Joseph Glenmullen, March 29, 2017 trial testimony
It’s an accident waiting to happen or it’s a happen waiting to accident .. ?
annie says
Yes, we have two major ‘splashes’, Gosport and Shiloh, but, its how do we draw attention to the ‘isolated’ incidences.
Gosport has drawn attention, rightly so, but, I can tell you that my own dear mum was subjected to reckless amounts of Gabapentin and Morphine and Fentanyl ‘but, she’s not in any pain’ ‘oh, but she might be’ and fading fast from her skeletal frame the doses were not even adjusted and she kept murmuring ‘they are killing me’. All my concerns fell on deaf ears until after six months with repeated claims that she is ‘very near to death’, she did die. One minute she was taking my teaspoons of tomato soup, the next minute after what looked like a huge dose, gone. I had a postmortem, I wanted an inquest but, no, the coroner reported, as usual, pneumonia.
This was long, it was protracted, it was difficult and it was a complete waste of time.
The same applied to everything I could possibly do about Seroxat ..
We can only hope that the Powers That Be realise, at some point, that this endemic use of medication when it is not required is happening in most hospitals, nursing homes, and most institutions for children and adults.
Gosport and Shiloh, are pretty near the bone, but, so is everyone’s horrific experience which is annotated so often and repetitively, on this blog and on Rxisk.
What do we do about it – it depends – whether it is in fact extreme negligence – and no one appears to want to know.
Auntie Psychiatry June 21, 2018 at 1:09 pm
“Kate Adlington, suggests that much of the media coverage of The Lancet’s antidepressant network meta-analysis was insufficiently nuanced…”
This makes me so angry! There can be no doubt that all media coverage was very carefully orchestrated by the Royal College of Psychiatrists via the Science Media Centre. Professor Sir Simon Wessely is conveniently on the Board of Trustees of this shady “charity”.
In fact, the journalists in the mainstream media did a pretty good job of accurately reporting what was fed to them by the lead authors of the study and other high-profile, media savvy psychiatrists. They were out in force and all dutifully on message with the line “antidepressants work, and more people would benefit from treatment for depression…”
Here it is again…
1. Lead researcher Dr Andrea Cipriani, from the University of Oxford, told the BBC: “This study is the final answer to a long-standing controversy about whether anti-depressants work for depression… I think this is very good news for patients and clinicians.”
2. Andrea Cipriani in The Metro: “Under-treated depression is a huge problem and we need to be aware of that. We tend to focus on over-treatment but we need to focus on this.”
3. Carmine Pariante was another one on our screens:
“This meta-analysis finally puts to bed the controversy on antidepressants, clearly showing that these drugs do work in lifting mood and helping most people with depression.”
4. “Good news… antidepressants do work and, for most people, the side-effects are worth it.” Allan Young
5. “It puts to bed the idea that antidepressants don’t work – all 21 antidepressants were more effective than placebo at treating depression”. Prof Anthony Cleare
Then there was the “million more” claim:
6. John Geddes, professor of epidemiological psychiatry at Oxford University, who worked on the study, told The Guardian: ‘It is likely that at least one million more people per year should have access to effective treatment for depression, either drugs or psychotherapy.’
This was accurately reported via the Press Association as…
“It has been suggested a million more people per year in the UK should be given access to treatment for depression, through either drugs or talking therapies, with scientists saying the study proves drugs do work.”
7. The Raconteur:
John Geddes: Only one in six people with depression receive effective treatment with GPs “squeamish” to prescribe medication for mental health conditions.
Pariante: We have a wealth of evidence that antidepressants do a good job for some people, and there are a lot of people who could benefit from them and now will.
“Such broad-brush headlines and content do not accurately reflect the study’s scope and results, Adlington contends…”
But this was NOT media spin – it was deliberately put out there by Psychiatry’s PR machine.
We need our own PR machine to work for us and with us .. how we get that is anyone’s guess .. but, Auntie, has a good go
Deirdre Doherty says
So many great posts; food for thought.
Regarding trying to create awareness & save lives through related major ‘splashes’ or a way ‘in’ (or ‘out’) in raising awareness:
Public health officials & business leaders like Bill Gates have long warned that the world is not ready for the next epidemic or pandemic.
Bill Gates is also back in the media warning us again recently…
While less ‘contagious’ than ‘SARS’ (but so phonetically similar), ‘ADRS’, so far, as we know, have proven to be a greater threat to lives worldwide than SARs was or than anything looming on the horizon (yet); the 4th leading cause of death in the US, 6th leading cause of deaths worldwide, causing more deaths than pulmonary disease, diabetes, AIDS, pneumonia & car accidents etc. (The US FDA).
Amongst possible ideas for another way ‘in’ or ‘out’ in raising awareness, relatively easy & cost effective for anyone to produce with some sophistication, a 5 or 6 slide, 15 seconds or so, video:
‘(NOW) PANDEMIC’ (dissolves, possibly inappropriate?)
[Acronym appearing or slowly solving into the background of the following text appears to the viewers as most likely morphing into the acronym ‘SARS’]
‘Already the 4th leading cause of death in the US…’ (source)
‘The 6th leading cause of deaths worldwide..’ (sources)
Acronym which has been slowly solving into the background actually morphs into, whole window & lingering, ‘ADRS.’
[link; phrase; stats?]
[Know the Rxisks?]
Short video as best produced & optimised for viral sharing as possible (& with short length of video on it); first slide, or holding slide, rather to convey something BIG is (already) happening & to ask the viewer a question? Are you aware/prepared?
Though no ‘controversy’ here, just the cold, hard, indisputable, facts & where so many deaths could be prevented with greater awareness, if unable to reach & convince key influencers, famous people, celebrities (if they could possibly be reached at all even with regards to simply sharing) to encourage as many affected or concerned as possible to share on related issues/comments made on social media?
Or just a desperfrustraging idea?!
Johanna says
I’ve been thinking about the ACT-UP veterans … David, have you or anyone else tried to make contact? It might be VERY useful given some of the things we are up against.
In the end, their struggle to speed up development of AIDS treatments did get used by the drug companies, as a supposed example of how “too much regulation” of Big Business was hurting patients. But to say that ACT-UP’s goal was to “make things easy for Pharma,” or to blame them for the spread of toxic and not-very-effective drugs, gets a lot of stuff wrong, I think.
Especially when it comes to AZT, and to GSK. Or rather, to Burroughs Wellcome, GSK’s forerunner. AZT was the granddaddy of all highly-toxic and not-so-great AIDS drugs. It was owned by Burroughs-Wellcome but had languished on the shelf for 20 years, labeled as a failed cancer drug. When it proved to have some effect on HIV, B-W saw the dollar signs, and NIH started focusing all its work on AZT at the expense of other drugs.
The first public action of ACT-UP, I think, was the Die-In on Wall Street aimed at Burroughs Wellcome. ACT-UP people thought the cause of FDA and NIH foot-dragging on finding better alternatives was NOT simply “bureaucratic conservatism.” It was their open collusion with B-W, which was charging ruinous prices for the stuff and making truly awesome profits. ACT-UP people fought to bring out the truth about AZT’s downsides–and I don’t think they ever fought for greater access to thalidomide. I have Googled and Googled, and I can’t find anything about HIV and thalidomide written before 1998.
Anyway–these people are still alive mostly, they have built an amazing oral-history archive, and some of them might be real useful. (Hey, at least they don’t mind getting specific about sex!) Iris Long, ACT-UP’s volunteer medicinal chemist, is now 85 years old. She might be an amazing interview, but best not to wait too long …
Here’s the ACT-UP Oral History Project:
http://www.actuporalhistory.org/interviews/index.html
David Healy says
Jo
I have tried to make contact. I’ve pitched it to people who were active then or the inheritors of the movement – those who pushed for access to triple therapy but to my surprise none of them and no NGO – MSF, Open Society, ACLU, or other body seems to “get it”.
In brief they have problems with the idea of Rights to a Poison – Rights to Sacraments yes, Poisons no. We live in a very one dimensional world – things are only good or bad but never right for one and bad for another.
Against this background, having the support of Pharma makes a key difference.
Also getting people on the street for access to trial data just isn’t going to happen. Has to be a different set of tactics and I think the activists of the 90s and 00s are too wedded to what they did then.
D
Johanna says
I will try to come up with some names. I suspect they will be people who were leaders at that time but who are NOT recognized as such today. Iris Long is one who may be regularly congratulated (at least within the LGBT community) but nobody actually listens to.
“People who were active then” is a pretty broad set, but as to the “inheritors of the movement” — well I think you’re right. The official AIDS organizations have been totally won to the promotion of “PrEP” or “pre-exposure prophylaxis” as the key to stopping the spread of HIV. Which means getting healthy young men on long-term daily doses of Truvada, an anti-retroviral drug made by Gilead, to prevent infection.
Gilead has helped them craft a position that anyone who raises questions about “PrEP” is either anti-gay, or simply anti-sex. It’s appalling to see a whole patient community just about merge with a drug company on this level. I’m not up on the science, but there’s reason to worry both about side effects, and about whether the virus itself might mutate if all the most sexually active young men are on maintenance doses of this stuff. Not to mention the price.
Larry Kramer was one person who criticized this when no-one else would, and was called terrible names by former comrades. I heard he had since been “won over” to PrEP, but hopefully is still watching it with an independent eye. In short, I agree there is no “AIDS movement” still out there that will “get” the nature of the problem. However, there may be individuals who can give us some invaluable pointers.
annie says
It was really quite good to see Jim Armitage, London Evening Standard, mention Bob Fiddaman in a recent article posted .
Jim Armitage
https://www.standard.co.uk/business/glaxosmithkline-faces-new-whistleblower-claims-over-unfair-dismissal-a3842706.html
See Truthman
https://truthman30.wordpress.com/2018/06/23/thomas-reilly-versus-glaxosmithkline-glaxos-manufacturing-processes-are-not-fit-for-purpose/
If you really want to cry in the soup, this is another weepy
https://truthman30.wordpress.com/2018/06/22/peter-humphrey-describes-his-life-inside-a-chinese-prison/
We should not underestimate news and media, shutdown..
I always look forward to the monthly RxISK Newsletter and in June, 2018, why has Facebook banned The Spectre of Dissent?
They obviously don’t ‘approve’ of the ‘content’, presumably key words/images drew an alert.
If Facebook do this, then we know we are under siege, under RCP, under RCGP, under Government, under Pharma, and Underneath ..
susanne says
The RCGP is already advertising it’s conference to be held in GLasgow October 2018. The conference is sponsored by the following drug companies – and there’s probably room for more before October – Money obviously trumps their stated claim to be dedicated to a profession based on transparency evidence freedom from the influence of drug companies. They need to be there but not sponsoring the conference.
Sponsors:-
Chiesi; Edwards Life Sciences; Oreal, Vera-Ve, La Roche-Posay; Natural Cycles Nordic. (Also the Scottish tourist board).
Exhibitors include – Alliance Pharmaceuticals. Still room for more. Also Betci Cadwaladr and NHS Wales
‘Why Exhibit?’ ‘The RCGP conference puts you in a room with 1500 primary care profs..Join us to increase your sales, meet competitors, plenty of time to learn about products and services.. a must attend…an unmissable app to sell your business solutions Maximise exposure by becoming a sponsor.’
There are three levels of sponsorship which include a sort of ‘party bag’ – pretty embarrassing . The Gold gets invite to dinner and celeigh – no dinner for the rest of them.
Speakers include Ben Goldacre ‘who specialises in misuse of statistics and science’ (really?) and who is plugging his book there.
This would be an opportunity to hold a demo outside the conference if anybody is up for it, Difficult to make a suggestion I can’t do myself but if there is someone(s) who could I can offer £100 to make materials and get to the conference building .
Deirdre Doherty says
Re Susanne’s post, although I couldn’t go I would be prepared, now I can, to donate towards or to help in any way also (or to any campaign/s patients and affected families may decide upon).
Missd are creating a new video and ambient awareness raising.
If I can get a simplified, short, and more general, curiousity based, ADRs awareness and enquiry raising video targetting people who have no clue of the issues at all or who may find them off-puttingly complex (ie. most unfortunately) produced cheaply I’ll share for feedback.
(Was thinking, re my previous post, if acronym based, of including AIDS -if not Opiod – in the viewing question/morphing answer of what hidden problem may be causing a ‘pandemic’ level of deaths now).
annie says
Maastricht World Survey On
Antipsychotic Medication Withdrawal
antipsychoticwithdrawalsurvey.com/
(translations available soon)
Have you taken antipsychotic medication (such as Zyprexa, Seroquel, Abilify, Risperdal, Haldol, Geodon, Stelazine, and others), for any condition or diagnosis, with or without other medications?
(For a list of antipsychotics, also known as neuroleptics or major tranquilizers, click here.)
And did you ever stop taking antipsychotics, or try to stop taking them?
Are you 18 years or older?
If yes, you can take this survey about antipsychotic withdrawal and attempts to withdraw, including if you stopped taking them completely or if you tried to come off and still take them.
The survey aims to improve mental health services by better understanding medication withdrawal. Lead researcher is Will Hall, a therapist, PhD student, and former patient who has himself taken antipsychotics. Service users/survivors/consumers from around the world also gave input. The study is sponsored by Maastricht University in the Netherlands; co-sponsors include the International Institute for Psychiatric Drug Withdrawal.
Beyond Meds/Monica Cassani
https://beyondmeds.com/2018/05/29/survey-on-antipsychotic-medication-withdrawal-please-take-and-share/
John Read @ReadReadj 5h
IMPORTANT NEW INTERNATIONAL SURVEY ABOUT WITHDRAWAL FROM ANTIPSYCHOTICS JUST LAUNCHED. PLEASE HELP WILL HALL DISSEMINATE THIS.
antipsychoticwithdrawalsurvey.com/
4:58 AM – 25 Jun 2018
Everything Matters ..
susanne says
Thanks for link re survey Annie – contacted Will H the PhD student, he is going to publicise Rxisk on twitter and facebook
annie says
This links in very nicely, Susanne, with the new RxISK.org post from Laurie and friends, Mary and Shaun.. would be a good positioning for RxISK..
The Icarus Project and Freedom Center’s 52-page illustrated guide gathers the best information we’ve come across and the most valuable lessons we’ve learned about reducing and coming off psychiatric medication. Based in more than 10 years work in the peer support movement, this Guide is used internationally by individuals, families, professionals, and organizations, and is available a growing number of translations. Includes info on mood stabilizers, anti-psychotics, anti-depressants, anti-anxiety drugs, risks, benefits, wellness tools, psychiatric drug withdrawal, information for people staying on their medications, detailed Resource section, and much more. A ‘harm reduction’ approach means not being pro- or anti- medication, but supporting people where they are at to make their own decisions, balancing the risks and benefits involved. Written by Will Hall, with a 55-member health professional Advisory Board providing research assistance and more than 50 collaborators involved in developing and editing. The guide has photographs and art throughout, and a beautiful original cover painting by Jacks McNamara.
http://willhall.net/comingoffmeds/
The WARM Network: Withdrawal and Recovery Meetings
https://warmnetwork.net/suggested-resources/
WARM is a great title …
Deirdre Doherty says
Re the righteous & timely outrage regarding the drugging of immigrant children & where a picture can garner interest & reflection more than a thousand words (most who have shared their outrage & news about this simply unaware of the/our hypocrisy).
The latest ‘Time’ Magazine Cover?
A specific focus on children in & out of ‘care’ & drugging without parental consent (or, more widespread, without informed parental consent regarding access to data, the lack of evidence for actual efficiency in children, exposure to the risks or education even in doctors, much less parents, on how to recognise ADRs)
A simple awareness raising, potentially life-saving, photo-shopped ‘Crime?’ magazine follow up meme or homage.
Who to take Trump’s Place as personifying the problem?
Too distressing to ask any affected parent for a photo of their child? Involvement?
Or instead of one child crying as symbolic of the plight of the immigrant children, the faces of actual victims in front of many thousands of US or worldwide ‘faceless’ children depicted?.
Over any picture or attached to any picture, nicely & politely, & without ‘scaremongering’,
a grassroots campaign specifically asking everyone or ‘all parents’ (& or all GP’s etc.) who were disturbed & outraged at the treatment of immigrant children to share their righteous concern regarding the system to all young children, in the US, of all nationalities around the world, who have been drugged or poly-drugged in care or without informed parental consent.
(Best educating links/ statistics/warnings not to withdraw a child from any treatment etc…)
Or, more catchy, ‘Study 329….It’s Time’.
(As the most famous or accessible study or doorway through which people not embroiled in, or aware of, the issues can become educated on some if not most of the major problems actually rife across clinical studies and the literature generally. Moreover, & most importantly where children are concerned and less able to articulate what they are feeling, awareness of the signs, for parents, of ADRs generally).
Just a thought & unsure of best, simple proposition, wording etc. & where it would need to be short & specifically action based. Designed for quick reflection & to (also) share….
Deirdre Doherty says
Re the GSK whistleblower and AIDS activism conversations:
Maybe someone happened upon this before:
The Firm, a film and television production and talent management company based in California, last year picked up
“the untitled Big Pharma/Whistleblower, a corporate thriller.. the ensemble piece tells intersecting stories surrounding a new controversial behavioural drug being willfully peddled to inner city families while a scrappy, driven district attorney clashes with a young and very ambitious pharmaceutical rep who is forced to participate in a wide-ranging conspiracy”
Brenner previously produced the Oscar Winning ‘Dallas Buyers Club’ (the story of Ron Woodroof, an AIDS patient diagnosed in the mid -1980s who smuggled unapproved pharmaceutical drugs into Texas for treating his symptoms, then distributed them to others suffering from AIDS whilst up against the FDA).
https://deadline.com/2017/02/the-firm-acquires-untitled-whistleblower-project-about-big-pharma-1201903985/
Hopefully, if completed, may inspire more needed whistleblowers
May also probably be completed as the Opiod Crisis deepens (and, hopefully, as more awareness is raised regarding the SSRI crisis).
The truth, as often said on Rxisk, is stranger (and even more incredible/gripping) than fiction.
Already sympathetic to AIDS victims, their ‘underground’ battle, and unlikely heroes in the then crisis, anyone who might know anyone who might know anyone who might know anyone who might have Brenner’s number! (Though Professor David Healy, through driven, never looks ‘scrappy’!)
Even for any interest in what may be a timely nod which could be woven in.
(Matt Damon and Brad Pitt had picked up the Andy Berham whistleblowing story on Abilify ten years ago now but nothing appears to have come of it…
https://www.cbsnews.com/news/bms-braces-for-tell-all-book-by-abilify-whistleblower/)
annie says
“Fiction, huh?
Peter Rost, M.D., former Vice President for Pfizer became well known in 2004 when he emerged as the first drug company executive to speak out in favor of reimportation of drugs. He is the author of KILLER DRUG and THE WHISTLEBLOWER, Confessions of a Healtcare Hitman.
A number of books critical of the pharmaceutical industry have recently been published, but none has been an exposé written by a senior executive of one of the world’s largest pharmaceutical companies.
The Whistleblower is at once an unmasking of how corporations take care of malcontents and a gripping story of one man’s fight to maintain his family and his sanity. Starting in 2003, the book details the illegal, even criminal business practices the author witnessed at his corporation, as well as his crusade to legalize the reimportation of drugs. It also explains how in this post-Enron world whistle-blowers can’t simply be fired, and what the author’s corporation did to coerce and silence him. A story of a battle that continues today, one which any American who takes or will take prescription drugs has a stake in, The Whistleblower is a powerful testimony.
https://www.amazon.com/Whistleblower-Confessions-Healthcare-Hitman/dp/193336839X
Pfiizer Whistleblower Sells Another Book
http://nymag.com/daily/intelligencer/2007/03/rost_takes_another_shot_at_big.html
Pfizer executive turned whistleblower Peter Rost is back doing what he does best: skewering his erstwhile industry. Rost was notoriously banished from Big Pharma after exposing tax fraud at Wyeth and illegal marketing at Pfizer; his tell-all The Whistleblower came out last year. His new project, a novel called The Wolfpack, was sold last week to Pagina AB in Europe. (It’s now being shopped to several publishers in New York.) “I wrote the story because I wanted to reveal the thinking inside a corporation, using the thriller format,” Rost says of his “Grisham-style” crime drama. The story follows a fictional drug company that develops a biological weapon and murders its enemies. Although Rost insists none of the characters are based on former colleagues, the new book is about “just how far corporate executives may be willing to go and what happens when one guy stands up to them.” Fiction, huh? —Jake Whitney
annie says
“We’re hoping that the FDA’s interest … will bring some of pharma back in,” said Ressler. “It’s been too long since there’s been interest in depression.”
https://www.statnews.com/2018/06/28/patients-suicidal-thoughts-antidepressant-trials-fda/?utm_source=STAT+Newsletters&utm_campaign=66712e8064-Pharmalot&utm_medium=email&utm_term=0_8cab1d7961-66712e8064-149674737
The Food and Drug Administration is overhauling its guidance for developing treatments for major depressive disorder for the first time since 1977 — and this time around, it’s making clear that patients with a history of suicidal thoughts or behaviors can be included in clinical trials.
Drug companies often rule out potential research participants with a recent history of suicidal thoughts or behavior, citing safety concerns or other issues. In a new draft guidance, the FDA says that patients with a history of suicidal thoughts or behavior “need not be systematically excluded” from clinical trials.
“Although this [exclusion] has been and is acceptable, we would encourage sponsors to broaden their inclusion criteria as long as they are able to do so safely,” said Sandy Walsh, a spokesperson for the FDA.
John Stone says
Readers may wish to be warned how imperiled the free internet is a the moment by an EU copyright directive to be voted on in the parliament on Thursday. If the directive goes ahead a blog such as David’s and many others will become unworkable, and will likely have to be taken down. The corporate fascists will have won. Brexit provides no solution in the UK because the main parties are already more or less signed up.
You can contact your MEP easily and swiftly through this website:
https://saveyourinternet.eu
Please help to circulate
http://www.jonathanarnott.co.uk/2018/06/the-internet-isnt-owned-by-any-government-but-a-tool-which-we-can-all-use-for-whatever-lawful-means-we-wish/
http://www.ageofautism.com/2018/07/jackboots-back-across-europe-closing-down-the-world-wide-web.html
This is the way the world ends, not with a bang but a whimper.
annie says
The only reason I put up this ‘quote”, not about antidepressants, is because we should wonder where things are going wrong..
Twitter users, blocked right left and centre, complainants being ignored, questions and answers signposting debate and all those harmed blogging, twittering, complaining..
Rob Purssey suggests The Inner Compass – what can we do about the ‘Inner’ and ‘Outer’ Compass?
Where does ‘Gotcha’ fit in to the frame of Data and Evidence?
michael sharpe @profmsharpe Jun 25
To CFS and ME patients and activists. I am grateful to those who engage in genuine dialogue. Unfortunately not all do and some waste time playing games of ‘gotcha’. I am sorry but life is just too short and those playing games will be blocked. A lost opportunity.
Is ‘Gotcha’ a way forward or a way backward .. ?
Is everyone trying the ‘Gotcha’ card, failing or winning .. ?
Is ‘Gotcha’ the way things are done or is ‘Gotcha’ the element of complete misunderstandings .. ?
annie says
GSK director sued over US opioid crisis
https://www.bbc.co.uk/news/business-44705658
There were also questions, however, about why Lewent’s previous role at Purdue had been removed from a biography on the company’s website.
Glaxo added the information back after enquiries from the Financial Times newspaper, saying the altered text had been updated and approved by Lewent.
http://www.dailymail.co.uk/money/markets/article-5914749/GlaxoSmithKline-dragged-drug-abuse-crisis-one-board-member-named-lawsuit.html
According to FT, GSK removed any mention of Purdue Pharma from Lewent’s bio on its company website and annual reports but GSK appear to have returned it.
http://www.lse.co.uk/AllNews.asp?code=22iaj2lr&headline=PRESS_GSK_NonExecutive_Director_Sued_In_US_For_Previous_Work__FT
Truthman reports FT Article and ‘altered bio’
https://truthman30.wordpress.com/2018/07/03/gsk-gsk-director-sued-over-us-opioid-epidemic/
GSK declined to “comment on legal matters faced by another company”.
susanne says
Thanks John – There have already been covert threats about David’s blog in my opinion when members of the colleges and other self interested groups are claiming that the issues he discusses in open forums are supposedly undermining confidence in taking medications. To undermine and skew the truth is a well planned method of trying to shut down the increasing awareness of the harms being caused to thousands on uninformed vulnerable people .As is Closing down access to information. a political tool used by many governments to threaten those who challenge unaccountable power. They may not be burning books but political blogs are already taken down or made to edit content or be shut down by the hosts of blogs. There needs only to be a complaint made and the host has the power to shut down a blog according to a process they control.
It’s worth a listen to Wendy Burn’s podcast on thebmj 5 days ago re International conference in Birmingham -where she declares that she has become very interested in politics since becoming president and realises it is a political role about money;power and influence. Goes on to describe the close relationships the college of psychs has been developing with politicians and other unnamed colleges . Mentioned Simon Stevens’ worry about social media effecting young people – that has some real cause but can also be used as an excuse to shut down sites. Prince William for goodness sake has seemingly become a listen to person on mental health – he is worried practitioners will become overloaded if people become more willing to be referred to services. Wendy disagrees and is repeating the mantra which is growing that more people are mentally unwell and need treatment. Most of the emphasis is on neuroscience eg learning from the USA – cells are being taken from people diagnosed with ‘schizophrenia’ and introduced into the brains of mice; there is a programme Investigating the brains of people diagnosed with ‘personality disorder’. That’s just a small flavour of her speech which completely avoided mention of the harms being caused by prescription drugs . Antipsychotics are given inappropriately by the cartload to the people she works with who suffer from dementia. That could have got a mention.
truthman says
Great comment
The high priests (and priestesses) of the royal college of psychiatry are zealots, that’s what’s dangerous about them. It’s about preserving the myths, the status quo, control, and of course maintaining power. All at the expense of patient’s lives..
We (the mental health sufferers) are fodder..
for the psych-pharma-industrial complex..
That’s the sad truth..
John Stone says
Susanne
We think it is bad now but it is nothing to where it might be going: presently they are on the offensive but they are also on the run. If they succeed in closing down the world wide web to ordinary citizens – it becomes a dead place of adverts and propaganda for state and global behemoths – they will have us exactly where they want, and power will become ever more arbitrary and unchecked (also they will have publish less and less truthful information). People could be arrested, diappear, be murdered and no one would ever know about it etc. etc. A Labour MEP told me that they were to have a discussion with Tom Watson before the vote. I suggested to her that he might like to consider what the Murdoch press could do if there was an embargo in criticising them in public (just an example). For what it is worth I placed this comment on on the AoA blog:
“Will
“In the wellknown line from a not so wellknown play (Almansor) by Heinrich Heine: “Where they have burned books, they will end in burning people.”
“That was written in 1823, before the days of the internet. Heine finally fleed Germany c. 1830 because of the rise in anti-semitism. Many of my American friends are worried about having their guns taken away, but people will find in the end that is nothing compared to having their words taken away. The mainstream media is completely discredited, so now they have to stop people talking and writing in the public medium of the time which is the internet (Almansor btw is set at the time of the expulsion of the Moriscos from Spain, not long after the invention of printing). Governments are not concerned about FAKE NEWS, they are terrified of REAL NEWS: they are deliberately dismantling any means by which the government-corporate machine can be held to account – they pretend this is about the rights of artists but it is about freedom of speech. I promise you if people don’t stand up (and sadly perhaps even if they do) we are heading for barbarism and chaos. This is the logic of human history.”
susanne says
John – We have evidence of how dark it is behind the scenes when proof eventually comes to light of so many outrages eg people are ‘rendered’ and tortured (note the disgusting term they use) despite claims that UK had never done such things. The mind set is the same when it comes to harming people with drugs – people are dispensable. It’s astonishing how groups in a democracy can hold so much power over other’s lives – The positions of control are held and passed around by small cliques who know how to work the system. How many of them are ‘chosen’ to write up and cover up all sorts of abuses eg Grenfell could have been another one altogether if the wonderful community hadn’t fought back, but how far they succeed will be ‘interesting’. Tokenistic consultations are often just a con to keep people quiet , So many people have sat on cttees etc only to find they are being used- The Scottish and Welsh petitions on prescription drugs were taken seriously by a tiny few in parliaments who encouraged them but no action will be taken, ditto re the college of psychs. who can simply decide to dismiss a complaint. As we know There are many people of good faith and sometimes the light shines through because of their actions which largely relies now on sharing info on the net The articles in the Guardian etc published on DH blog are a hopeful breakthrough when journalist won’t usually touch the subject even if still had to be published anonymously. They wouldn’t have been published if so many activists and supporters hadn’t persisted in highlighting the truth – When the middle classes get the message through such as the Guardian then push backs will increase even more I guess – or in cloud cuckoo land ,they might find they have left it too late to shut down the message and even start telling the truth. But People are afraid of those who should be standing up for them and more and more regulations place those in a bind. There is another group of activists who are tech savvy who will know how to get through controls on the net – but most of us will be in the dark again if it keeps getting shut down . I guess most who do know what’s what will carry on doing as much as possible hoping the word is taking hold enough to change things – as it has for many and as gives hope and expertise to others. .
John – do you know what happens when content of blogs is taken down? Is it somehow disappeared along with as you rightly say – the human beings who are ‘ disappeared’? If so it would be necessary to make copies of significant abuses such as reliable accounts of suicides and other harms from medications . Otherwise all that will be left is fake data.
John Stone says
Susanne
Presumably people would do their best to preserve data and exchange it privately etc but it becomes much easier to harass them – the need to record becomes an ever greater imperative. The basic story with mainstream media is that with occasional chinks of light it gets worse, ever more under the thumb of government industry proxies like SMC and SAS. And we have seen MSM silence over the European Directive – one MEP told me they had more 50,000 letters, but it is not in the mainstream narrative – and they have competing interest.
John Stone says
I am glad to say the European Parliament voted out the directive this morning after massive citizen lobbying (despite no mainstream publicity). The European Commission will be back with new proposals in September.
annie says
Kristina K. Gehrki @AkathisiaRx 35m
Tune in today to the radio show “What’s it All About” where I’ll discuss medical freedom of choice, Informed Consent & psych drug dangers. Broadcast starts at 6 p.m. East Coast time; 3 p.m. West Coast time. See
The Stations that leaves no Listener Behind
http://www.kcaaradio.com/
Independence Day ..
annie says
Ooh La La ..
Simon Wessely @WesselyS 9h
Replying to @Andy__Bell__ @wendyburn
Really excellent tour d’horizon from @wendyburn on #NHS70 and #mentalhealth pointing out recent successes such as perinatal, challenges to come, such as adolescents, and where we are falling behind, such as severe mental illness
Le Gateau …
https://www.theguardian.com/commentisfree/2018/jul/05/mental-health-nhs-priority-health-service-underfunded
A fair share for mental health has to be the NHS’s priority
Wendy Burn
That the problem is recognised will be a start. In the long term, expectations and ambitions need to be raised. We need to aim to treat the majority of young people who have a mental illness, not the minority.
Singing the Same Old Song ..
https://www.bing.com/videos/search?q=edith+piaf&&view=detail&mid=35D0A364DBC4CFA8CD5635D0A364DBC4CFA8CD56&&FORM=VRDGAR
The voice, kids ..
Ove says
There is simply no incentive for anyone to get to the truth.
Atleast no incentive that has a greater allure than the current state.
From our (my) perspective, we have alot of noble and well meaning incentives, but that has no place in ‘modern society’.
“We shall treat, never cure” and move from one chemical to another.
“We count blessings, never the curses” and silence the fallen at almost any cost.
“Ask your doctor, never question him” stay off google to solidify his power to function as a front line liutenant for Pharma.
Ove2018
annie says
David Carmichael
19 hrs ·
The Wendy Dolin vs GSK lawsuit about the Paxil-induced suicide of her husband Stewart in 2010 is in the news again. On July 3, Cook County Record published this article about the GSK appeal of a $3 million jury verdict in 2017. “The U.S. Supreme Court has decided to wade into the contentious question over whether a pharmaceutical company can be held liable, potentially costing many millions of dollars, for failing to warn consumers and doctors of a drug’s potential effects, when federal regulators prohibited them from adding such warning language to the drug’s label.”
SCOTUS takes Merck’s Fosamax appeal, could boost GSK’s appeal of $3M verdict over lawyer’s suicide
https://cookcountyrecord.com/stories/511474546-scotus-takes-merck-s-fosamax-appeal-could-boost-gsk-s-appeal-of-3m-verdict-over-lawyer-s-suicide
Attorneys for Dolin, however, asserted drugmakers like GSK have never demonstrated conclusively that the FDA actually ever barred them from including specific warning language on their labels. Rather, plaintiffs have argued the drug company didn’t push hard enough to persuade the FDA to add the language.
susanne says
NICE Guidance on ‘The Treatment of Depression in Adults’ has resulted in the harshest of responses from the British Psychoanalytic Council on their web site pub 05/07/2018 (with thanks)
NICE was forced to revise their suggested guidelines at the end of last year but this second revision has been condemned again – BPC ‘Stakeholder Position Statement on the NICE Guideline for Adult Depression’. pub June 2108
The majority of stakeholders are therapist/analysts with some input from ‘user’ orgs and is signed by the college of psychiatrists but not college of GPs (as far as I can see) Although Clare Gerada ex president,has signed she has signed as an individual and not as a member of the therapy org she belongs to . Nor has Simon Wessley who signed as an individual signed as a member of the scientific org he leads.
Their ‘Summary of Concerns’ includes a Lack Scientific Standards and Integrity and calls for 6 Amendments
In Summary:- ‘There are serious methodological flaws…the treatment recommendations cannot be relied on ..will be misleading, invalid, and impede care of millions of people in UK. and internationally.. potentially causing clinical harm.
(INCREDIBLY) NICE agreed that there are valid concerns but ‘ ..NICE suggested these could be addressed in the next revision. We hope that NICE will improve their methodological approach in future , These issues must not be postponed .NICE guidelines have a significant influence on UK policy (and an effect internationally). Therefore the Published guideline in it’s current form would have a damaging effect on service users, the health professional workforce and research practices.
annie says
The Zebra Trilogy …
Editorial: This series of posts on Stewart Dolin’s death interrupts a series on how to bring about change . This is not inappropriate as law suits are one of the few ways to bring about change. This post in the series is by a Chicagoan – Johanna Ryan who has been tracking the case since it was filed first.
How a Chicago jury got it right
Change in Chicago: The Dolin Verdict
May, 1, 2017 | 22 Comments
https://davidhealy.org/change-in-chicago-the-dolin-verdict/
Possibly one of the most critical posts on ‘What to do about Suicide’ with some truly enlightening comments …
22 Comments for the Catch 22 ..
Zebras
A contemporary person who has collected his share of Zebras is Dr. David Healy, whose early experience with patients who became violent on SSRIs has elevated him to expert status on the subject. He’s currently blogging about the cases every few days [e-alert sign-up here].
http://1boringoldman.com/index.php/2012/03/07/the-warning/
Zebras
https://leoniesblog.com/2018/07/08/get-the-hippocratical-boat/
Posted on Wednesday 7 March 2012
1BOM – the warning
Ali says
Hi Dr. Healy and others!
Stumbling across your website and reading the articles and comments has saved my life! And I know I’m not crazy.
At 20, I was placed on the “god send” Prozac which was fairly new back then. My parents had just divorced and my grandmother tragically had just died in the most unexpected manner. Hardly a call for Prozac but I was young, in college, took the advice of the doctor. The next 16 years became a revolving door of being switched to every “new” antidepressant came out. Finally in 2015 I found myself on Paxil for the second time. I’d basically stopped functioning, was exhausted all the time I decided no more antidepressants. I had a heck of a time getting off of it but eventually I did.
In the meantime however over the next few years instead of things getting better they got significantly worse. I had such severe insomnia coming off the Paxil I was put on up to 550mg of Seroquel to sleep, 60mg of Adderall for “ADHD”, 300mg of Lyrica for migraines, 3mg of Xanax for “panic disorder “. The real wake up call came when I was put on 300mg of Lamictal in March, 2018. My dose was raised over 3 weeks from 100mg to 300mg over three weeks. I became non stop suicidal, 24/7. It was the final wake up call I needed.
I found a former physician of mine to help but I’ve had to do the work! Since May, I’ve come off the Lyrica, Adderall, and Lamictal cold turkey. I just finished my Seroquel taper. I dropped from 3mg of Xanax to 2mg, and will handle the rest of the benzodiazepine with small cuts of diazepam. My energy is low, anxiety high, rebound insomnia, but for the first time in over 20 years I’m remembering things, I have hope, and I’m incredibly proud of myself for pushing through this to end the nightmare forever. My life is worth more than this and maybe the next 20 years will be the best of my life as the last 20 have been the lowest human should face.
For anyone going through withdrawal of any of these medications please hang in there! It’s certainly not been easy but it’s worth it. The best part of all is I don’t truly believe there ever was wrong with me, although at 20 years old when this started I couldn’t have known I guess. That’s a very freeing thought for me and I hope others!
mary H. says
Ali, you deserve a medal! Thank goodness that you were able to free yourself from all the drugs. I am sure that your story will inspire others who are struggling through withdrawal at present. I hope that you will now help all of us to raise funds for the Rxisk prize Fund and to raise awareness of what these drugs do – which is give you the idea that you are ‘mentally ill’ when, in fact, no such thing is true!
Deirdre Doherty says
I agree that you deserve a medal and you should be so proud of yourself.
When I was ‘new in’ (or ‘out’) Rxisk more than any other site had saved my life also (when I was suffering from horrendous withdrawal symptoms including akathisia) and was a great source of open education, validation, consolation, advice and support to those who have suffered from side effects and adverse effects.
That’s a lot to go through, I think, since May.
But just great that you found a doctor at least willing to support/help.
If ‘new in’ and not already receiving support, also try to and get some recognition and some support amongst friends and/or family if you can and in what may be a freeing but maybe, sometimes, also an angering, frustrating, lonely and isolating experience. Rxisk articles and blogs are accessible to the disaffected.
Also, and where I don’t want to sound negative at all and where you are so buoyed and brave, if I could go back, and albeit only in my case, I would bear in mind that that you have been exposed to the drugs for a long time.
Though you seem in far better shape than I was and it may be one of those in for a smoother sailing, just to let you know where I was determined as hell to be free from the drugs which had only ever caused me harm (but where, in my case, I had become so physically dependent I could hardly walk without support, and continued to cut my nose off to spite my face) that it would be no personal failing on your part, no lapse of morals on your part, nor reason to self-flagellate yourself, if you ever find yourself ‘back there’. It is a process.
Great to hear of your progress and zeal and hope that yours continues to be one of the positive outcome stories so many try to find and find hope in.
susanne says
Good news! Today on CBC News ‘Federation has ordered Health Canada to Release Confidential Drug Data on HPV Vaccines’. Not all the way there yet but a great step forward as far as I understand this news report.
annie says
Ultimately – how much does, pressure succeed …
What to do about ‘Corporate’ Suicide .. .
BOB FIDDAMAN @Fiddaman
“Please note that @GSK takes all allegations of misconduct seriously, including those raised in Mr. Fiddaman’s weblog.” ~ GSK’s Vice President for Compliance for Emerging Markets
Truthman30 @Truthman30 2h
I wonder did they read the backlog of your ten years of posts! … They really are delusional.. anyone that works for GSK would have to have their head buried in the sand…
https://twitter.com/Fiddaman
Saturday, July 14, 2018
GSK Management in a Tizz Over Fiddaman Blog
https://fiddaman.blogspot.com/2018/07/gsk-management-in-tizz-over-fiddaman.html#.W0oqgPZFwzM
“Speak Up culture” ..
“If you would like to speak with someone in the company about this or any other concerns that you believe have not been addressed, we would be happy to make a member of the company’s Corporate Investigations or Compliance Team available to speak to you.”
The Evidence, However, Is Clear, The Seroxat Scandal …
Savita Sharma says
Dear god help me. I have severe akathisia and I’m afraid I won’t last long. I don’t know what to do. I reinstated an antidepressant due to muscle pain. Just muscle pain. I didn’t know it would kill me! Something about the reinstatement caused serotonin syndrome. I’m 28 years old! I’m struggling to live. It’s like being tortured 24/7 by your own body. This is a crime against humanity. I had so much potential. I was an officer before all this happened. I was never even depressed. I have wonderful family and friends. After the reinstatement I went to the hospital and the dr told me it didn’t exist and made me take Ativan telling me it was all anxiety. That made my akathisia tardive and permanent. Every pill I’ve taken since has made me worse. I’m afraid. Please god let there be a cure for this hell. I’m so afraid. I wish I could turn back time.
Deirdre Doherty says
Savita
My heart goes out to you.
Although it’s almost impossible to believe when you’re in the grip of it, please know, from someone who has been put through something similar and who was pushed to the edge with it, that if you are suffering from akathisia that it is horrendous but will dissipate.
I also (too many) also had a doctor figuratively ‘murder’ me to add insult to injury – and dangerously (when already subjected to a terrible state).
The mantra: these effects, this state, will dissipate. I am not crazy.
Hoping you can find friends or family and refer them to what you are going through and they at least may provide you with some support.
Savita says
Dr. Healy what does one do to be cured from tardive akathisia. This is a crime against humanity. By the way the psychiatrist that made me take Ativan he told me you were working for pharma companies. I tried to tell him and he murdered me with his lies.
annie says
Isn’t this Pure Dead Brilliant …..
https://davidhealy.org/magna-pharma/
Magna Pharma
Faced in 2012 with questions about the $3 Billion fine imposed on GSK – triggered by a sequence of events starting with Study 329, – is it just the cost of doing business? Andrew Witty snapped back:
“Although corporate malfeasance cases end up looking very big, they often have their origin in just… one or two people who didn’t quite do the right thing. It’s not about the big piece. The 100,000 people who work for GSK are just like you, right? I’m sure everybody who reads the BMJ has friends who work for drug companies. They’re normal people… Many of them are doctors.
Jorge H. Ramírez says:
July 13, 2015 at 9:27 pm
“The licensing of drugs is a bureaucratic procedure that has nothing to do with science. As things stand, the way FDA goes about approving drugs has enough of the appearances of science so that most doctors and patients are fooled into thinking there has been a science based decision when there hasn’t.”
– Agreed.
There is even a reference to – Hannah was here.
In the comments …
“They will ALL get it one day, but in the meantime, we have much serious work to do, linking arms in solidarity, and the devil take the hindmost.” – pure dead brilliant, Heather R.
annie says
What to do about ‘UK Royal College’ Suicide ..
John Read @ReadReadj 18h
UK psychiatrist Wendy Burn catches hell for “dangerous claim” of “withdrawal symptoms disappearing within two weeks of stopping antidepressants” –
http://www.psychsearch.net/wendy-burn/
Thirty Mental Health Experts Write to Secretary of State About ‘Unprofessional’ Conduct of the UK Royal College of Psychiatry
https://www.madinamerica.com/2018/07/30-mental-health-experts-write-secretary-state-unprofessional-conduct-uk-royal-college-psychiatry/
Extract:
Following the Royal College of Psychiatrists’ refusal to retract a public statement minimising the withdrawal effects of antidepressant drugs, and their suppression of research evidence that contradicts their statement, 30 mental health experts have, today, written to the new Secretary of State for Health and Social Care to inform him that “the Royal College of Psychiatrists is currently operating outside the ethical, professional and scientific standards expected of a body representing medical professionals”.
This is a matter of grave concern since it involves information about prescription medications taken by millions of people across the UK. We feel that this matter requires urgent attention and should not await the results of the Public Health England review into Prescribed Drug Dependence.
We have appended the original Complaint, with all the relevant research evidence and correspondence. We believe the RCPsych responses show a trail of obfuscation, dishonesty and inability or unwillingness to engage with a concerned group of professionals, scientists and patients.
If a group of scientists and psychiatrists together cannot challenge the RCPsych in a way that leads to an appropriate, considered response and to productive engagement with the complainants, what hope is there for individual patients to have a complaint taken seriously?
annie says
What to do about …
Shiver me timbers …
I didn’t expect the Daily Mail to do a number on ‘good looking guy’ meets ‘the body’ …
http://www.dailymail.co.uk/tvshowbiz/article-5959537/Elle-Macpherson-kisses-discredited-doctor-food-market.html
Not one to miss a trick, how many tricks have they missed, the Daily Mail have done a number on Andrew Wakefield and how he is out casted from the UK..
He is no longer out casted…
David Robert Grimes @drg1985 Jul 19
David Robert Grimes Retweeted Terrence Higgins Trust
Fantastic news re: HPV vaccine being extended to boys. In countries with high uptake, cervical cancer cases have fallen markedly, meaning male HPV cancers are now predominant. Hope @SimonHarrisTD will consider this for Ireland!
Health Canada ordered to release confidential drug company data on HPV vaccines
Federal government insisted drug companies’ clinical trial data is ‘confidential business information’
Doshi refused and took the federal government to court.
https://www.cbc.ca/news/canada/nova-scotia/judge-orders-health-canada-to-hand-over-pharmaceutical-data-1.4745302
“Regulators shouldn’t have a monopoly on judging the risks and benefits of medicines or hinder others from doing the same via confidentiality agreements,” said Doshi, assistant professor at the University of Maryland School of Pharmacy and an associate editor at the BMJ (formerly known as the British Medical Journal).
It seems squeezing lemons is an occupational hazard …
John Stone says
Grimes is at his exercise
Fever has struck the British media at the sight of Andrew Wakefield photographed Florida in the company of super-model Elle Macpherson. I was even interviewed in the Daily Telegraph!!!!
https://www.telegraph.co.uk/men/thinking-man/whatever-happened-andrew-wakefield-curious-rehabilitation-doctor/
Also on the topic:
http://www.ageofautism.com/2018/07/best-of-aoa-the-sarah-boseley-problem-again.html
And Edzard Ernst who was interview in The Times:
https://edzardernst.com/2018/07/andrew-wakefield-donald-trump-scam-and-the-anti-vaccination-cult/
Lucy on Saturday 21 July 2018 at 18:03
Vaccines need to be evidence based, assumption is not good enough, we need real placebos in safety trials, unvaxxed Vs vaxxed studies, long term health outcomes, the full vaccine schedule studied rather than one at a time, there needs to be independence, no conflicts whatsoever, and the witch hunts against those who find harm of vaccines have to be stopped, otherwise it is pushing vaccination much too far away from anything that we can call science.
Reply
John Stone on Sunday 22 July 2018 at 11:00
Lucy,
You make a very good point – medical interventions have to be justified – and one basic objection to the present vaccine schedule is that mostly the products were never even trialed against genuine placebo. But what we have here is an attack on people: Andrew Wakefield or anyone at all who is vaguely critical of vaccines, who are all now apparently members of “the anti-vaccine cult”. This, of course, has nothing to do with science and everything with what one might describe as bad rhetoric. Again, we see Wakefield transformed into the Emmanuel Goldstein of public science, but it is a non-sequitur: even if any of the allegations were remotely true, which they are not, it would not demonstrate that any single vaccine product was safe.
To understand the Wakefield case you have to focus I believe on two elements (1) what would happen if doctors started listening to parents about vaccine injuries (2) what would happen to industry prospects if parents were allowed to go on choosing which products to give their children (as was still the case in the UK in 1998). As I pointed out the industry succeeded in raising the cost of vaccinating a single child by 68 times between 2001 and 2014, but it is highly questionable whether this was of any general benefit to health:
http://data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/health-and-social-care-committee/antimicrobial-resistance/written/86156.pdf
And Wakefield speaking out of turn in 1998 was threatening the entire project.
Reply
John Stone on Saturday 21 July 2018 at 19:22
Prof Ernst,
The problem is that the core charges were laid against all three doctors at the GMC were dismissed by the High Court in 2012 when the senior author and clinician in the paper, Prof John Walker-Smith was exonerated – this is of course left Wakefield and Murch technically guilty of thing which had never happened. I had predicted this two years before:
https://www.bmj.com/rapid-response/2011/11/02/unexplained-puzzle-gmc-verdict-and-reponses-peter-flegg
The GMC mired is their sheer incompetence and vindictiveness were unable to appeal. But, of course, the mainstream media never reported. A more detailed account of the problems with the findings can be found here:
http://ahrp.org/laffaire-wakefield-appendix-1-the-uk-high-court-decision-in-the-appeal-by-professor-john-walker-smith/
It is really quite obscene to go on repeating these claims which are without foundation. Meanwhile, Cochrane have three times stated that MMR safety studies “are largely inadequate” (in 2003, 2005 and 2012), while none of the autism studies was rated of low risk of bias in 2005, even foreshadowing the revelations of William Thompson about 2004 DeStefano study in the film Vaxxed:
“The conclusion, however, implied bias in the enrollment of cases
which may not be representative of the rest of the autistic population of
the city of Atlanta, USA where the study was set.”
https://www.bmj.com/rapid-response/2011/11/02/re-evidence-not-bullying
So, they evidently spotted that African-American group had been excluded.
But now we have a monumental problem, which is the unexplained rise in autism at unsustainable human and financial cost. Perhaps, we would have been better off as a society if we had not hung Wakefield out to dry, and listened tolerantly, but we valued the development of the vaccine industry more (recently MEPs stated that the cost of vaccinating a single child had gone up by 68 times between 2001 and 2014), and this, I suspect is what it is really about.
http://www.europarl.europa.eu/news/en/press-room/20180319IPR00021/health-committee-meps-warn-against-dropping-vaccination-rates
I leave you with my recent letter (21 May) to BMJ collating data about the steepling numbers and spiralling cost of policy:
Re: Autism spectrum disorder: advances in diagnosis and evaluation
https://www.bmj.com/content/361/bmj.k1674/rr
I have read this review with interest but disquiet [1]. There is perhaps little point in talking about a global prevalence of autism, which Zwaigenbaum and Penner place according to literature at between 1 and 1.5% if autism is rising dynamically in many parts of the world including the United Kingdom – as I have been recently detailing in the columns of BMJ on-line [2]. For instance, recent data from Northern Ireland showed an overall prevalence in schools there of 2.9%, having risen from 1.2% nine years ago, but there are also big disparities between economic classes and town and country, while in Belfast the rate was 4.7% [3,4]. Unfortunately, as Zwaigenbaum and Penner point out diagnosis is characteristically delayed so the true rates are likely much higher.
The rate that be can be established for England from education figures may be at the top end of official estimates at 1.5% but is rising steeply year on year – the rate of Pervasive Development Disorder (the widest possible category of Autistic Spectrum Disorders) for those born between 1984 and 1988 in the United Kingdom was recorded in official data as being 0.2% in 1999. The present figure from Scottish schools data is around 2.2%. However, dramatic reports appear from around the country [2], notably a report from S.W. London where five London boroughs geared to already diagnosing 750 cases a year were confronting almost double that number a year ago . Extrapolated across the capital that might be 10,000 cases a year, which would possibly be in the 10% region [5]. I have argued that still without any officially accepted explanation for this phenomenon – and certainly Zwaigenbaum and Penner provide none – we are on the brink of population catastrophe. They state:
“Lifetime societal costs related to services and lost productivity by patients and their parents average $1.4m (£1.0m; €1.1m) to $2.4m in the United States and £0.9-£1.5m per child in the United Kingdom, depending on comorbid intellectual disability. When the prevalence of ASD is factored in, the annual estimated societal costs of ASD are $236bn in the US and $47.5bn in the UK.”
However, most autism parents know from experience that these are very modest or even delusorily low estimates. Even in 2001 Järbrink and Knapp estimated an average lifetime cost per case in the UK as £2.4m (perhaps £3.8m in today’s money) though they thought the overall prevalence was 5 in 10,000, which it perhaps still was in the adult population [6].
We come back in the end to the reality that when it comes to what could be driving these changes to our society the authors neither acknowledge the problem, or have any explanation of it. I fear they may be fiddling as Rome burns.
[1] Zwaigenbaum L, Penner M, ‘Autism spectrum disorder: advances in diagnosis and evaluation’, BMJ 2018; 361 doi: https://doi.org/10.1136/bmj.k1674 (Published 21 May 2018)
[2] Responses to Viner RM, ‘NHS must prioritise health of children and young people’, https://www.bmj.com/content/360/bmj.k1116/rapid-responses
[3] John Stone, ‘Re: NHS must prioritise health of children and young people – 1 in 21 children in Belfast now have an autism diagnosis’ 13 May 2018, https://www.bmj.com/content/360/bmj.k1116/rr-6
[4] Information Analysis Directorate ‘The Prevalence of Autism (including Asperger Syndrome) in School Age Children in Northern Ireland 2018’, published 10 May 2018, https://www.health-ni.gov.uk/sites/default/files/publications/health/asd-children-ni-2018.pdf.
[5] John Stone, ‘Re: NHS must prioritise health of children and young people – what about autism?’ , 19 March 2018, https://www.bmj.com/content/360/bmj.k1116/rr
[6] Järbrink K, Knapp M, ‘The economic impact of autism in Britain’, Autism. 2001 Mar;5(1):7-22.
Reply
Mike Sutton on Sunday 22 July 2018 at 10:37
There a very strong hereditary element in autistic spectrum disorders. Any study looking at some kind of link between vaccines and autism would need to control for this hereditary element. Wakefield never did that. Moreover, the huge increase of screening for autism in the western industrialized world (now screening children as young as two years of age) is one likely explanation for the rise in diagnoses of cases of autism (over no detection and over other developmental diagnosis applied in the past) – not necessarily that there has been an actual rise in the incidence of autism in the population.
Reply
John Stone on Sunday 22 July 2018 at 13:54
Mike
Every time a diagnosis is made a huge cost is involved to the state so there is always actually an attempt to keep a lid on it all, but if you look at the Northern Ireland figures that nearly 2% of all children are in the most sever category and Belfast nearly 3%. In the late 1990s autism diagnosis was well advanced yet on the broadest definition (PDD) for older children the rate was still only 1 in 500. Despite heavy focus on the alleged hereditary component for three decades relatively little advance has been made except on the epigenetic front ie association with environmental damage to specific genes.
Reply
Mike Sutton on Sunday 22 July 2018 at 10:56
John – it looks like you come under considerable fire for being an anti vaxxer . E.g. heer: http://www.ecbt.org/index.php/facts_and_issues/article/john_stone_and_the_best_of_age_of_autism_just_plain_wrong_about_everything
Are you an anti-vaxxer?
Reply
John Stone on Sunday 22 July 2018 at 14:04
Mike
You may like to look at my comment to Lucy above, which Edzard has posted. What is actually happening is that anyone who criticises the vaccine programme, individual vaccine products, or the vaccine lobby now comes under the general label “anti-vaxxer”. So, it has very little meaning except that you are not prepared to swallow the whole programme without criticism. I think this also represents the ethics of the vaccine lobby.
Reply
John Stone says
“Perhaps the most fundamental point is that having established this uninterrupted global pipeline for the industry’s products to the world’s children they have failed to ensure manufacturing standards even according to their own criteria.”
http://www.ageofautism.com/2018/07/the-global-vaccine-crisis-of-2018-why-andrew-wakefield-is-back-in-the-news.html
annie says
THE TIMES
times investigation
Over 70,000 children put on pills for depression
Prescriptions given to 7 million people last year
July 21 2018, 12:01am, The Times
“There must be something wrong.”
https://www.thetimes.co.uk/edition/news/over-70-000-children-put-on-pills-for-depression-kfc39l0xl?CMP=Sprkr-_-Editorial-_-thetimes-_-Unspecified-_-TWITTER
Alyne Duthie @alyne_duthie Jul 18
Professor David Healy would question the value of prescribing antidepressants in this age group altogether –
https://twitter.com/alyne_duthie/status/1019694863913226240
BOB FIDDAMAN @Fiddaman 5h
BOB FIDDAMAN Retweeted BOB FIDDAMAN
Who can justify this? Saying there are not many alternatives is a fucking ludicrous argument.
https://fiddaman.blogspot.com/2018/07/royal-college-of-psychiatry.html#.W1NnlvZFwzM
Justify – Ludicrous – Argument ….who can disagree with that …
annie says
“The Dolin verdict sent a clear message to GSK and other drug manufacturers that hiding data and manipulating science will not be tolerated,” says Paxil attorney R. Brent Wisner. “Brand drug manufacturers have the ability and responsibility to make their drug labels accurate. If you create a drug and know that it poses serious risks, regardless of whether consumers use the brand name or generic version of that drug, you have a duty to warn.”
https://www.baumhedlundlaw.com/prescription-drugs/paxil-injuries/generic-paxil-suicide-lawsuit/
John Read @ReadReadj 3h
Not one English media outlet, papers, tv or radio, would publish this negative story about the profession of psychiatry!
BOB FIDDAMAN @Fiddaman Jul 22
Aropax 356 Study. More suicides and suicide attempts in Australian Paxil clinical trials. Blog, along with internal documents coming next month. It’s worth the wait, folks!
streetphotobeing July 23, 2018 at 7:18 am
Pharma is a is a drug business not a talk business. Going to a GP with a ‘MH’condition is like getting out of the boat….
https://www.youtube.com/watch?v=_4dFDBYWuTc
Auntie Psychiatry July 23, 2018 at 7:39 am
Brilliant!
Never get out of the boat … absolutely goddam right…
unless you were going all the way …
annie says
Should GlaxoSmithKline break up ..
https://www.fool.com/investing/2018/07/23/should-glaxosmithkline-break-up.aspx
There are quite a few articles about GlaxoSmithKline, in the news, about splitting up Consumer from Pharmaceuticals and Vaccines..
They took a hefty toll with the Novartis buy out for Consumer and now seem to be in considerable debt.
Shareholders are rankling. Ms Walmsley has recruited new blood and got rid of all
previous stayers..
Doesn’t it seem, to any reasonable professional person, that GlaxoSmithKline, under the new leadership, and new barons, that they are seriously underfunded, overstaffed, and in need of some sort of blockbuster.
Don’t you wonder how adept all these expensive new recruiters are, what can they do, and how the pharmaceutical day to day business is somewhat of a worry for investors and the little patient at the end of it all who only wants an honest drug, one that is clearly fail-safe and one that is not mired in to the depths of such a calamitous series of lawsuits such as that of Paxil/Seroxat/Aropax/Paroxetine…?
Do they really, really, really know what they are doing as so many financial journalists are wondering…?
Ove says
ANNIE>>> so if the cases of cervical cancer has dropped significantly, (probably excused by many other HPV-related cancers that are based on a hunch), then the reason must be vaccine given before ~1998???
My reasoning: vaccine is given before the age of 15, and the typical onset of cervical cancer is 40 years of age (between 35 and 44), therefore any change in rates must be to girls given the jab at around 1998? Otherwise it has nothing to do with HPV-vaccine?
Or am I wrong?
Ove, more delusional each day =)
annie says
File on 4 investigates, Radio 4, at 8.00pm tonight –
Counting the Cost: Antidepressant Use in Children
https://www.bbc.co.uk/programmes/b0bbq1gr
More antidepressant than ever before are being prescribed to young people in Britain, despite fears that they can cause harm in some cases.
What are the driving factors behind the increase? Is there any merit …
SHOW MORE ++++
On the alternative show we have a Legend and two other recipients of honours …
Simon Wessely @WesselyS 15h
Getting ready to present @dineshbhugra for his fellowship at the @KingsCollegeLon graduation ceremony A legend around the world. Bravo Dinesh and Mike @KingsIoPPN @rcpsych @KCLalumni
https://twitter.com/MikeT_Personal/status/1021484173540900865
https://twitter.com/UniofExeterNews/status/1019269769474772994
https://twitter.com/wendyburn/status/1016789054988406784
Truthman30 @Truthman30 Jul 11
Replying to @wendyburn @UniversityLeeds @rcpsych
Well done Wendy.. what medicine is this?
Congratulations, this must be thrilling.
There is nothing like a prestigious award for your lifetime’s work in the mental health arena.
Just a small question, though
What is it, you have actually done?
Back to R4….
AntiDepAware @AntiDepAware 2h
Reece’s story will be featured on the programme: “Reece, aged 17”
http://antidepaware.co.uk/reece-aged-17/
Footnote (Nov 2016):
Reece’s mother, Tracey, wrote the following article in the Stolen Lives section of Katinka Bradford Newman’s website The Pill that Steals Lives.
“I strongly believe that Reece would still be with us if the doctor hadn’t prescribed Sertraline 50mg when all that Reece needed was counselling to get through everyday teenage problems.”
Legend, is in the eye of the beholder ..
annie says
child and adolescent faculty at the Royal College of Psychiatrists –
‘Only’ one in four
slow but steady move towards treating ‘everyone’ who is unwell
Dr Bernadka Dubicka, who chairs the child and adolescent faculty at the Royal College of Psychiatrists, said: “Currently only one in four children and young people are treated for their mental health problems. The fact that prescriptions for antidepressants are rising could reflect a slow but steady move towards treating everyone who is unwell.”
Antidepressant prescriptions for children on the rise
BBC News
https://www.bbc.co.uk/news/health-44821886
Victoria Derbyshire
“After being on the tablet for 3 days they sent her home … and then she took her own life.” Nicky Romero’s daughter, Becky, killed herself after being released from a secure unit with antidepressants.
Victoria Live
https://twitter.com/VictoriaLIVE/status/1021675034543190016
This is terrible.
Sounds very much like Akathisia – bouncing off the walls
These poor, poor children suffering the agony of Akathisia
annie says
Sorry, but this programme disappointed.
Who thought it wouldn’t?
It was a reasonable try with two deaths from drugs by teenagers who were toppled over the edge.
Not just the drugs, but from the the lackadaisical attitude they received when given powerful psychotropics that Adults cannot tolerate.
I was hoping, beyond hope, that they would have David Healy involved.
It had to be Cipriani, whose study got the Media, The Royal Society of Psychiatrists and, in particular, Carmine Pariante, all excited.
We know what these drugs can do, and the bravery of the two lots of parents interviewed was second to none and how understanding they were of the doctors.
I have to say, here, that I have not any sympathy whatsoever for their doctors and ‘damned if they do, and damned if they don’t’ as quoted by one of the fathers was extremely forgiving.
These drugs, all of them, are pushing children over the edge and should not be prescribed.
It is heartbreaking to listen to yet another programme trying to be balanced and I see the problem that the journalist had – but, all in all, he didn’t interview an Expert on SSRIs..
Balance is all very well, however, two much loved and cherished children are catastrophically not with their parents any more.
They are probably too grief stricken and much too nice to put any blame on the doctors.
This programme was highly disturbing, for all the reasons we know too well and the pharmaceutical companies are creating a very cold climate, in return.
mary H. says
Agree totally with you Annie – totally one-sided rather than ‘balanced’ if anything! I would love to know how much had been edited out from what the parents had to say. I cannot believe, quite honestly, that they were quite as forgiving as the programme made out. I didn’t feel that there was anything in the whole programme that would make other parents stand up, take notice and go ahead to make sure that their offspring didn’t suffer in the same way. Far too cosy for my liking!
annie says
This is it? GSK rolls out a buzzy new R&D plan long on aspirations and short on performance goals
There’s a comment on culture:
GSK also intends to promote a culture of increased accountability and smart risk-taking. This will include redefining success and fostering a culture of truth-seeking versus progression- seeking, and optimised portfolio decision-making, alongside implementation of a new robust governance model. Targeted business development to strengthen the Group’s pipeline and technology capabilities will also be part of the new R&D approach.
https://endpts.com/this-is-it-gsk-rolls-out-a-buzzy-new-rd-plan-long-on-aspirations-and-short-on-performance-goals/
GSK’s pharma R&D group doesn’t make blockbusters, though. Or hasn’t in years. And adopting a strategy that any business school graduate could have whipped up one afternoon won’t gin up missing excitement in the investment community.
susanne says
Agree with you Annie and Mary – journalists and the BBC are still too afraid of upsetting the golden apples cart .
annie says
Hail Barron ..
So let’s invest in exciting stuff and kill it when it doesn’t work
‘It’s a belief system that is about not fearing failure,’ he told The Mail on Sunday. ‘They have a model that says: ‘Look, I am going to take ten bets. I’m pretty sure nine are going to fail, and I am OK with that, because the tenth is going to give enough return that this is a great idea. So let’s invest in exciting stuff and kill it when it doesn’t work.’
Meet Glaxo’s drugs Barron: Scientist paid more than his boss plans to inject spirit of Silicon Valley
http://www.thisismoney.co.uk/money/markets/article-6002811/Glaxos-scientist-paid-boss-plans-inject-spirit-Silicon-Valley.html
She added: ‘Hal and I spent hours talking about culture before he decided to join the company.
The company also revealed plans to cut annual costs by £400million and announced a new partnership with gene-testing company 23andMe – which, like Barron, is based in Silicon Valley – to help it develop new medicines.
He described the four-year deal as a ‘really good idea’, and said he hoped others would follow GSK’s lead for the good of patients.
‘I will be thrilled if we in the industry had a better success rate in developing more drugs for patients,’ he said.