Editorial Note: This post by James Bennett, a research coordinator on RxISK, follows on from last week’s Everyone has the right to challenge “Scientific Experts”. The article accompanying the image of War on Science from the National Geographic featured in that post made the case that we increasingly live in a world of tribes – the tribes who see vaccination as an unmitigated good or a harm, the tribes who believe in climate change and those who don’t and most of us get our views from the Tribe we belong to rather than think them through ourselves. When it comes to your health a tribal response is rarely a good thing. The reason we make drugs available on prescription only through doctors was supposed to be as an aid to each of us to hang on to the middle ground between company marketing and complementary or alternate medicine. But rather than be a bulwark against tribal responses, all too often doctors seem to lead the pack.
The Internet has had a huge impact on many aspects of life, including the way many of us deal with matters concerning health. Whether just looking for lifestyle tips or seeking detailed help for a specific diagnosis, we now have the ability to access information from health organisations, doctors and medical researchers on a global scale.
Some may be able to seek out treatment ideas that they simply wouldn’t have known about. Not only is there greater scope to connect with health professionals, but we also now have an unprecedented ability to share knowledge and experiences ourselves.
One of the areas that has seen significant changes is mental health. Day or night, sufferers can now connect instantly with others like themselves in forums and social media groups all around the world, who can offer advice and emotional support.
Through these new media channels, mental health has become a hot topic, with charities and other organisations reaching out to the public to raise awareness and to educate.
Such a scenario would previously have been unimaginable. But, behind the Utopian facade there are some less desirable realities.
Fractured approach
Medication has increasingly become the first line strategy for dealing with mental health issues, with antidepressants being among the most commonly prescribed drugs.
However, there is significant reluctance from many involved in mental health, both professionally and in voluntary groups, to discuss serious side-effects. While the influence of pharmaceutical companies is never far beneath the surface, things have taken an usual turn. Many who are antidepressant users themselves are now behaving in the same way – not discussing issues.
As a result, a degree of duality has emerged on the Internet, with websites and social media groups often falling into one of two categories:
The first provides mental health advice and support, either for a range of issues or one specific area such as depression or anxiety. However, information about serious drug side-effects is often minimized or omitted completely. Discussion of the risks is sometimes not welcome.
The second category deals specifically with iatrogenic problems caused by psychiatric treatments. They raise awareness of the issues, and provide emotional support and technical advice to people who have been harmed. This can include those who are withdrawing from psychotropic drugs – a process which can last for months or even years.
In November 2013, we published a set of e-mails between RxISK and a leading UK mental health charity, which perfectly highlighted an unwillingness to be candid about medication risks.
The cure or the problem?
Medications for various conditions can have emotional and behavioral side-effects. This is something that can impact those using anti-epilepsy drugs for example.
The same is true of antidepressants. They can cause a range of problems including depression, anxiety, panic attacks, aggression, apathy and emotional numbness. This is vital information for users, but it is something that many mental health organisations rarely divulge on their websites in any substantive way.
It is clear that some sufferers do make a link between psychological effects and their medication, particularly when a problem occurs suddenly, such as when switching to a new drug. But, problems can develop more gradually over time. Coupled with polypharmacy and multiple dosage changes, the issue can become clouded and there is less chance of the treatment being called into question.
A serious problem that generally receives only a cursory mention, if at all, is akathisia. Described as a sense of inner restlessness, it is a complex and highly destructive side-effect of various psychotropic drugs. It can manifest as a physical inability to remain still, but can also be less obvious, presenting as anything from a constant and disturbing unease in the mind, through to an intense emotional turmoil.
It is a similar story for withdrawal. Websites sometimes mention that antidepressants should be tapered carefully, but they are often vague on the details. Despite the well-established 10% reduction protocol, it is still common to see reports in social media from those who tapered over just a few weeks or by taking the medication on alternate days, and then experienced what they believed to be an immediate relapse.
For more information on withdrawal, please see the Guide to Stopping Antidepressants on RxISK and the forthcoming Withdrawal Forum.
The stigma divide
Those who use social media will probably be familiar with the concept of mental health stigma and the anti-stigma campaigns. This refers to the scenario where people find themselves treated differently, and unfavorably, after revealing that they are suffering from a mental health issue. As a result, they can be reluctant to speak out about their problem or to seek help. The campaigns look to address this by raising awareness and by attempting to gain greater social acceptance of mental health problems.
However, this is not the full story. The campaigns fail to mention that those who have been injured by antidepressants and similar drugs, as well as those working to support them, are also victims of stigma. They are often labelled as anti-medication, anti-psychiatry, and are generally seen as trying to upset the natural order of things. Ironically, this is often perpetrated by those who are antidepressant users themselves.
The medical profession is often equally misinformed about medication adverse events and can be hostile or apathetic toward those seeking help, even where the iatrogenic nature of the problem has been acknowledged.
Those who received support while believing they were suffering from a long-term mental health problem, can quickly become outcasts after discovering that their problems were exacerbated or even caused by their treatment.
Illusion of knowledge
Despite the advent of the Internet, increased media coverage and general efforts to raise awareness of mental health, in many ways the situation has actually deteriorated. Much of the information that people need is missing from the places they are most likely to be looking.
While a lack of knowledge can be a problem, the illusion of knowledge is even more hazardous. There are many people who now believe they have a comprehensive understanding of their issues, yet appear to know very little about their medication and how it might be affecting them. Efforts to restrict this information only serves to undermine and discredit the message of empowerment within mental health.
In terms of those antidepressant users who contribute to this problem themselves, there may be no single explanation. It could be a combination of factors.
For some that have connected with other mental health sufferers in Internet groups, perhaps the sense of belonging – the shared experience – becomes more potent than the need to understand the experience itself.
In some cases, the drugs themselves may also be playing a part. Those who have successfully withdrawn from antidepressants often did not realize how their judgement and perception was being affected, until they stopped.
The fact that antidepressants can cause serious psychological problems is seen as threatening to invalidate the experiences of those who are happy with their diagnosis and their medication. Attempts to discuss the issues are sometimes regarded as an attack on pro-choice, when in fact it is the opposite.
The greater good?
It is sometimes said that publicizing the risks of antidepressants and similar drugs would cause distress and lead people to discontinue their treatment. Ironically, withholding this information can also cause distress and result in poorer outcomes, as side-effects become mistaken for features of an ongoing or worsening mental health problem.
Interestingly, there is an element of this approach on both sides of the divide. Concerns that legacy-effects may be permanent are sometimes met with solid reassurance that this is definitely not the case, and they will resolve in time. Those who offer a less certain prognosis can be met with criticism for damaging people’s hopes of recovery.
The reality is that while some people do improve and would even go as far as considering themselves recovered, others are still experiencing significant problems many years later. Clearly, tact and sensitivity are called for, particularly when sufferers are in withdrawal. But nevertheless, it is an interesting observation that people on both sides of the line are willing to present a particular narrative when they believe it is in someone’s best interests.
The future
The Internet is both friend and foe. It has empowered a great many people, and allowed them to take control of their health and their lives. It has connected people in a way that would otherwise have been impossible.
But, the Internet is also a breeding ground for misinformation and has provided another avenue for the influence of pharmaceutical companies to pervade the consciousness of the general public. Critical mass may have been achieved, as the message to oppose discussions of side-effects and to regard the injured as purveyors of stigma, has now become self-sustaining within the mental health community itself.
There is a wealth of information in the public domain about psychotropic medications, from side-effects while taking them, through to withdrawal and legacy-effects. But, the newly diagnosed are unlikely to be looking for this, so it becomes limited to assisting those who already suspect that something is wrong and are seeking answers. It becomes damage control rather than being preventative.
The problem is complex. Efforts to tackle it must be robust, but also carefully considered. Spreading the message is important, but on its own may not be enough to bring about real change, and in some cases can be counter-productive. Adverse events on prescription drugs need to be reported, and the healthcare system needs to be pressured into dealing with them.
The time to act is now, before the fractures in the health landscape become too deep to repair, and any possibility of genuine empowerment is lost.
Get your free RxISK report
If you are experiencing prescription drug side-effects, please complete a RxISK Report to discuss with your doctor.
This is so true. If you dare to speak out and tell of the hidden side effects you are labelled as anti medication. Nothing could be further from the truth for me.
I have no thyroid so without my daily medication I wouldn’t be able to function.
My son has a neurological condition, some of the drugs he now takes have helped him considerably.
That’s all great but it does not take away from the fact that he suffered severe withdrawal syndrome from venlafaxine which has resulted in him facing a prison sentence.
When on venlafaxine his side effects were horrendous hence the reason for stopping them but when he reported side effects he was told not to worry they would disappear when he had been on the medication for a while and the dose was increased even though he was reporting side effects …. they didn’t go they just got worse. Within the first week of taking it he told me he was getting a feeling of pulsations in his head as if his brain was getting electric shocks. He told his Doctor and Neurologist about this, who I hasten to add are supportive, good Doctors. They had never heard of this side effect and said it wasn’t a side effect of the drug. Later when it was too late, I found that this is widely reported amongst patients and is sign of dependency on a drug that is supposedly not “addictive”. There have been countless reports of this and yet the average Doctor knows nothing of it.
When he could take no more of the tremor, facial spasms, nosebleeds, sexual dysfunction, pulsations, headaches, muscle pain, visual problems, emotional numbing… to name a few of the side effects. He was told to taper for just three days and as I say I consider his Doctor to be a good Doctor she just advised with the information she holds about this drug.
I accept totally that medications can be of great benefit and even life saving in some cases.
What I cannot and never will be able to accept is that my son’s life has been ruined at the age of 20.
I can’t accept that he now faces a prison sentence.
I can’t accept that my family who as far back in generations as I can go have never broken the law have to deal with the shame of what’s happened.
I can’t accept that I’ve lost my job because of this.
I can’t accept that im a virtual prisoner of my own making because I don’t want to talk to people where I live because they all know what happened.
I can’t accept the gut churning feeling of sickness every time a court appearance is due.
I can’t accept and never will that our lives have been ruined just because my son decided to stop taking a prescription drug that was making him feel worse.
Does this mean that I want venlafaxine banned or taken off the market so that people who are benefiting from it are denied it too ? No certainly not, all I want is for Pfizer to be truthful about the full range of side effects this drug can cause in some people and to give Doctors the full information about how severe withdrawal can be not just the bare minimum diluted version they have now. So that GPs know there is a risk of severe withdrawal in some patients and that tapering for longer than a few days or even weeks is vital in these patients.
I have been a victim of this drug also, for 8 years thought I was well, and in those years, I lost the love of my life (30 years, met at 16), lost my finances (financially brain dead, lost my life savings, my house), lost any chance of employment (now on Disability)… the hardest thing during the horrific Withdrawals is regaining my brain, and realising what I have done. Hugs to you and your son……..xxxxxxxx
Luckily the only illegal thing I did, was two drink driving charges…… but I know, on these drugs, I could have done so many more, more evil things…… they make you irrational…..
Venlaxafine should be banned. I dont know of anyone it has helped. I got put on it as a lab rat (newest drug)…… I am sick of being a lab rat. It is disgusting, they trial the drug on people, everyday people, like your son and I……
I was previously a lab rat for zoloft, and had a half a heart baby, born beautiful and healthy, then got sick, died in agony, after three days. I reported it to zoloft, 19 damn years later, 19 years of deformed babies, finally people in USA get to sue…. I don’t I live in Australia. SICK OF BEING A LAB RAT.
Ang,
Venlafaxine has helped me to emerge from disabling depression and re-enter life. You have clearly had a terrible reaction to this medication.
Hi Venlaxafine …. do you have a support you trust totally? Husband? Trust him. I hope you dont start to see him as the cause of your depression (as I did), and I began remembering only the horrible parts of our relationship… not the good. I began to have no idea of money, I started hoarding, I separated, I trusted people who I would never have trusted. Within two years my life had crumbled, AND I THOUGHT I WAS WELL…. Within 2 years I was arrogant, self centred, jeckyl and hyde, and of course totally unemployable. 8 years on? Lost a 500,ooo home, a life I loved. I am now on disability, all in 8 years on effexor. But giving up effexor is worse, I got my brain back, now live with the guilt, of a person who was bloody horrible. And beware the urge to drink alcohol, that is a side effect also. Wish you well.
Hi ang,
I watched my wife go through more or less exactly what you describe and have read hundreds of similar stories over the last 5 years. Although very rarely have I heard it from someone who was on venlafaxine and now realises what really happened to them. Of the 12,000 or so posts I read on the old Topix ssri/snri marriages destroyed thread, which was mostly composed of people like me who had lost their partners and some big pharma astro-turfers, I think I was one of only two or three that had any kind of happy ending. I played a very small part in that because I knew what was happening and never gave up, but ultimately we were extremely lucky with some highly unlikely events converging to break the spell.
My wife was on 225mg venlafaxine when she left me and took our two children. One freak weekend, during child exchange, she ended up staying the night. 2 months later she discovered she was pregnant and was tapered from 225mg in 2 WEEKS on Docs orders. As you can imagine, the next 7 months of pregnancy/cold turkey withdrawal/single other of two soon to be three/birth was a very difficult time for her.
When she was about 6 months pregnant she was very close to the edge, and this is when her CPN mentioned two things that changed the game… Bipolar and Social Services, something I had explicitly warned her about. I had been waiting patiently for her memories and personality to return and I was 99% certain they would, I just didn’t know how long it would take. She hated me at this point and I wasn’t even allowed near her house. It seems the social services/bipolar suggestions snapped her back into reality, and over the next few weeks she slowly started to remember her real life. About 2 weeks before she was due to give birth she walked out of her rental house and moved back home.
Two weeks later she had a beautiful, healthy baby girl and we have lived happily ever since. We had a lot of rebuilding to do, financial, emotional, friendships and finally her physical health ..something we are still working on to this day. But I never once doubted her or blamed her for anything that she said or did during her time on and withdrawing from venlafaxine.
Most of my friends and family can’t understand how I was able to forgive her so easily, even though I have tried hard to explain it to them. It was easy because I witnessed what happened from as close as you could ever get without actually taking the medication itself. I saw it happen to someone I had known intimately for all of my adult life, so I recognised that the person who walked back into that house with our new baby was not the person who had done all those things, but the person I had been with for the 15 years previous.
I saw it in her eyes, her face and smile, her body language and her actions. I’m glad you got your brain back, but always remember you have nothing to feel guilty about, that person was never you. Take it from someone who knows.
Neil, I do feel guilty…… I locked that man out of his own home….. that he and I had built together….. I look back now, and I went on effexor, because I was thin, but on it for 12 months, he became the evil one, in my eyes, the one to blame. We had been together nearly 30 years, young loves, aged 16 and 17. Effexor destroyed this…… His family hate me, now I understand why…………………. I lost everything…. and now getting my brain back, is the hardest thing I have ever had to do, I have to stay sane, I have to get over my serious guilt, I have to survive…………..
Thankyou Neil, so much for sharing….. My sister encouraged me not to have my husband present when I saw psych, etc….my female psych was a “man hater” was obvious………… I just wished so much that I had a dad, so I could understand men………. but my dad suicided in 1966, I am sure as a result of valium, the new ubeaut drug of the day, cause damn it sends me psycho too.
But in some sort of sick way, this gets twisted that madness runs in the family? Yes valium sends us all nuts………….
To Neil,
I found your account very moving because it struck such chord with me.
I’m so glad you are managing to rebuild your life together.
It’s nearly a year now since my son’s withdrawal and he is still not the person he was before venlafaxine. After the psychotic episode it was as if a bomb had gone off in his brain and destroyed the person he was. He was devoid of emotion or personality.
Because his withdrawal was so intense and severe in the week he stopped venlafaxine, at first in the months following I thought he was getting back to normal but with hindsight he wasn’t. Although his behaviour was no longer aggressive or psychotic he was a shell of his former self. Just empty. He has told me since that he felt like his brain had been fried, he still has no memory of that awful day. Me however, I can remember every second of it, every action, every word because I constantly relive it feeling guilty. Why didn’t I realise how serious his mental state was, why did I miss signs, why didn’t I know that something terrible was happening to my son until it was too late.
Hi Lisa,
One thing that struck me when I first starting reading other peoples negative experiences with antidepressants were the similarities, especially with effexor….not the night sweats or the brain zaps or even the sexual problems, but the striking emotional and behavioural similarities. Different people in different situations with different underlying illnesses, sometimes separated by half the globe, acting in almost exactly the same way.
Unfortunately the similarities on the way up didn’t really seem to be repeated on the way down. People report vastly different experiences from the withdrawal and there didn’t really appear to be any way to predict when, or even if people would come out of it fully.
I always felt the seriousness of whatever happened before could play a part sometimes, as a sort of barrier to recovery. With my situation the things that went before were bad, plenty of people got emotionally hurt, plenty got financially hurt and there was a whole host of humiliating things to face up to… but no-one got physically hurt, no one committed a serious crime, no one died, so there wasn’t really anything that couldn’t be undone with a lot of bravery and hard work.
But if the damage gets any worse than that then reality might not be place you’re in a hurry to come back to. I don’t mean consciously deciding to stay emotionally blunted, but more like a PTSD type of thing.
Why did you not see the signs? Why did I see the signs? I had some help with that. Way back at the very start when my wife was diagnosed with PND, I confided in a work colleague. He told me a story about his sister that started with antidepressants and ended with a bipolar diagnosis, divorce, her husband being branded an abuser and her children being taken into care. I didn’t really listen and my wife went on antidepressants with my support, but when his story started playing out in front of my very eyes, I took notice real quick.
I guess this illustrates one of the many reasons why it’s so important to speak up …never mind the trolls, keep on telling your story. It may just make all the difference some day.
Hi ang,
you’ve got this far! Life may not be what it once was, and you have lost so much, but you’ve got your brain back! That can’t have been an easy thing to do on your own. So if you could do that, then I’m sure some day you can find happiness again. Of course you feel guilty, that can only be natural after what happened, but just keep reminding yourself that you didn’t throw anything away… it was taken from you.
Thanks Jan, but that is hard. I never believed drugs could change a personality… I do now….. but I still blame myself…. Effexor is the worst…… it is horrific…. and all the time I thought I was well, all the time in self destruct mode.
How old are you Diedre? I was 45 before I got truly addicted….. managed to give up so many SSRIs before (doctors never told me what they were).. But I kept my brain, got off the stuff…..
Venlaxafine? THE DEVILS TIC TACS….Good luck. And my advice? Check lft, kidney function, chol and trigs…only took 8 years and I had stage 3a kidney disease, ie ready for dialysis. My liver was stuffed, and I has high cholesterol and high blood pressure. My brain is still healing from these drugs, now I am off them, and damn that is hard, but my physical health is back to normal.
Just ride out the depression, even if it takes 12 months,if you are young, otherwise the drugs will send you crazy in 15 years. Or kill you with heart attack, diabetes, etc, etc…
Or never take them longer than 6 months, then you have a chance.
Ang,
I am 67. I have past experience of terrible side effects from cardiac medications, but so far I have only experienced positive effects from Venlafaxine. I have regular blood tests and ECGs and so far all that has emerged is some vitamin D deficiency. More time sitting in the sun and salmon will deal with that.
Yep venlaxafine works quick….. are you on 75mg ie the SSRI drug, or on 150mg and above, the SSRI and the SNRI drug, ie then you taking two drugs. If you on 75 mg, no problem, above that, venlaxafine destroyed me….. The norephedrine reuptake thing? Means I felt a reward (a reward, like when you clean the kitchen and it looks great… gone!) I felt a reward for stupid things, like hoarding, all the time not cookiing, cleaning, enjoying art and crafts…. Now off it, I cant do anything, no reward, crazy….. cant even do the dishes, cant be bothered to shower. Venlaxafine above 75 mg, is pure evil.
Ang,
I take Venlafaxine 37.5mg twice a day in comination with Mirtazapine 30 mg at night. So far, so good.
Regarding the short duration of typical trials, is there any push to require follow-up of clinical trial participants after the trial ends?
I have found studies that document discontinuation outcomes after an initial exposure phase. They assign half the drug group into drug and discontinuation groups; the discontinuation group gets Newspeaked into the “placebo group,” and their adverse outcomes are attributed to relapse/recurrence.
Here is a transparent example of the model, whose authors include Charles Nemeroff (read about him on this site) and Michael Thase, described by Daniel Carlatt as the researcher who single-handedly put Effexor on the map.
https://www.researchgate.net/publication/5986854_The_Prevention_of_Recurrent_Episodes_of_Depression_with_Venlafaxine_for_Two_Years_%28PREVENT%29_Study_Outcomes_from_the_2-year_and_combined_maintenance_phases
N.B. Of 1096 on venflaxine at the outset, a mere 18% were deemed to have “responded” to the drug after six months and retained as participants; the other 82% were never mentioned. Soft fraud.
Thanks for the piece on Goldacre…the man seems to have many tricks in his bag. Such a man, a trickster, magician, clown, must be carefully watched…
When I first read of his statements about AllTrials, I envisioned him as the guy with the bass drum first, then decided no, he was the drum major, saying “Follow Me”…”I know the way”.
What I suspect is that he is in the pay of BigPharma. Perhaps this could be checked.
Wish you well Diedre….. beware of your personality changes…. beware of hoarding, spending money, making enemies of those who were friends, blaming your husband, blaming your workmates/bosses for your depression. Most of all BEWARE. Good luck! an instant fix, isnt always the best… GEt off the stuff asap..
Ang,
Your really terrible experiences are not normative. I shall continue taking this medication for as long as it is useful. A close freind has taken Sertraline for more than ten years with only positive effects. He will shortly be 68.
Deirdre
I don’t want to be seen to gang up here – I think you are brave to hold to your point of view. I don’t see anyone at serious odds with it – what the comments have been aimed at doing if finding the words that would sustain a middle ground.
Now having said that, the data on SSRI and related drugs is that no more than half of those put on them take them for more than a month so the normative experience is to find they don’t work or they have bad effects. In my opinion anyone taking them for ten years is likely to be doing so because they are physically dependent on them. The trials that brought sertraline on the market were 6-8 week trials and in only 1 of 6 done did sertraline perform better than placebo.
David
My honest advice? Find out how to get off the stuff, before you consider going on it…. surviving antidepressants…..
sure 50% will cope with the drug (perhaps)…. and come off OK
But the other 50%, read about how to get off the drug, when the time has come. These drugs were tested over 6 weeks…. ie 6 months is the max anyone should be on them. So read about how to come off them BEFORE YOU GO ON THEM.
They can cause a range of problems including depression, anxiety, panic attacks, aggression, apathy and emotional numbness.
Quite disappointing to see how you failed to mention sexual dysfunction this time round and focused mainly on akathisia, when sexual dysfunction is just as much a complex yet highly debilitating side-effect.
Hi Amy, yes sexual disfunction is horrific, but full blown akathisia is the agony of agonies, luckily I didnt have it for long. Good luck, and good healing!
In a state of full blown akathesia I could have done literally anything. Akathesia can also be physically invisible to the onlooker, but the sufferer themselves still being in a state of complete mental terror (and not knowing why).
I’m very grateful for this article.
I’m sorry, but I have to disagree with you. I had SSRI-induced akathesia and it was horrible, so I know what you’re talking about. It eventually stopped as it normally only occurs in the first few weeks of “treatment”. You, however, have not been hit with full-blown sexual and emotional numbing, and therefore can’t tell me which is worse. Since having it, I am incapable of feeling love for anyone or anything, unable to feel motivated to leave my flat, have no friends due to a severe inability to connect with people on an emotional level or to even converse. My family see it as rejection as opposed to a brain trauma causing the inability to show them love or affection and has caused such a rift that no-one visits or phones anymore. Add that to the fact that no-one is even willing to consider such permanent side effects are even possible and you get total isolation. I never had these problems in my life and actually had a life before them. I had the SSRI-induced akathesia and it subsided – these never did. Once your emotions and sexual responses are gone, you are stripped of the very essence of who you are. It’s basically a chemical lobotomy.
Hi Amy, I am also unable to leave my home. Do not assume I am well, I am not. The loss of love, change of personality, jeckyl and hyde me on effexor, meant the loss of a 30 year marriage, I had loved him since 16 years of age, gone in the first two years of effexor. 8 years later, off the stuff, I am a hermit unable to do anything, and getting back my old personality, realising what those drugs made me, how they destroyed my life, is the most difficult thing to cope with. I had a house, a family, money in the bank, a job. Now I am state housing, unemployable, and on a disability pension. All in a few years. Viva effexor!
You are wrongly conflating “sex” with love, as so many do after a lifetime of propaganda, starting with the barrage of silly pop songs and movies in pre-adolescence.
Akathisia is being tortured from the inside out.
“Sex”, whether conceptualized as the capability for orgasm (which is easily obtainable at one’s own hands) or as the desire for partnered activity with another (unrelated to love AND unnecessary to experience orgasm) is not even on the top of Maslow’s pyramid much less the bottom. Where physical safety, ie freedom from agony, whether the agony is caused by a person carrying a machete or nonstop akathisia caused by a pill) is one of the foundations.
Comparing akathisia to no longer ” desiring” to engage in one’s own silly fantasies about “sex=love” (or, on the other side, “sex=orgasm facilitated by using another person’s body=the pinnacle of human experience”) could not be possible in the absence of both this venal, prurient society’s nonstop propaganda or an actual experience of the minute-by-minute hell that is akathisia.
These drugs are known to affect every organ in the body and cause 99% chance of premature death in the region of 20 years or so. I am 63 and am desperately trying to come off my medication with no proper advice from my doctors. They keep reducing it too quickly so I withdraw and suffer side affects from this which are not dissimilar to what I suffer from anyway.
The only way Derdrie you can honestly say this drug is working for you is as a placebo and you would have recovered anyway just by yourself. You are with all respects like myself a drug addict. No better no worse. Whether legally or not this is what you are dependent on this medication, this drug.
You cannot live your life without it unless you try and then your life may be prolonged and you might well live to be 90. I hope you do!
Brilliantly written, absolutely spot on. Well done.
This is a wonderful article, grapplying with a complex issue. Well written, cogent.
Next up – more possible solutions, brainstorming ways to break free of the mess.
I’ve been thinking of some but they are still as yet too unformed to mention.
Many of us have suffered harm – let’s imagine new ways to change the playing field.
In the US pharmaceutical domination of the mainstream media was easily achieved in the late 1990s when the Clinton administration de-regulated pharmaceutical advertising. In the UK the media have been horse-whipped into line by organisations such as Science Media Centre and Sense About Science. Also, certain journalists like Ben Goldacre seem to wield hidden power – a wrangle at Guardian newspapers in 2007 over reported levels of autism in children in Cambridgeshire led to an article being withdrawn and the editor-in-chief of the Observer being sacked (although it emerged in succeeding months that the article was well-founded). No doubt there are some financial sanctions in the UK and much professional intimidation in the US as well in maintaining the MSM’s ideological purity.
The big problem for the industry therefore is how to control social media, and in particular there have been recent rumblings from Facebook and Google about censoring and downgrading material deemed by them not to be sound. Google have talke about a “truth” algorithm, Facebook already have a history of blocking health material they deem unsuitable, and have threatened more. Meanwhile, I expect that my experience on a website (not this one) over the weekend discussing the intervention of Robert Kennedy Jr in the debate over forced vaccine mandates was probably quite typical. I was subjected to mocking and vituperative abuse. My comments and those of Kennedy were subjected to absurd degrees of hair splitting in order to characterise them as lies. There can be little doubt that the pharmaceutical industry can finance this sort of activity out of its petty cash. No doubt it can even recruit bullies through “sceptic” websites like Bad Science who will do the dirty work for nothing.
While there has been some understanding of the need to control hate material on the web I believe it is going to be hard to enforce when this material is in favour of powerful interests, and the unpleasantness has evidently got much worse, much more systematic over the last decade – a big part of the problem is discretion over enforcement. People will turn a blind eye. Also, of course, mny sites have already turned to blocking information (however well-accounted) that they don’t like – for instance Huffington Post, which started out being very liberal.
Obviously, what we really need is a return to health matters being discussed in an open and tolerant atmosphere but in these terms these are the most frightening weeks on the web I have ever been through.
John Stone – Thoughtful post. One idea which has come to me today, in consultation with another advocate, is to explore with Public Citizen whether we could crowdsource them money to them to beef up their HealthResearch group activities. They are in D.C. (ever since being founded by Ralph Nader and Sid Wolfe – …he founded the Health Research Group part of Public Citizen). The Health Research Group (check out what it does) regularly dogs the FDA, publishes “Best Pills Worst Pills, and so on….maybe with more cash they could do more, like sue the FDA for waffling as it does, or other things it can’t afford to do now.
Think about it. They are already there, and already do a great job, given the resources they have at hand…
Thanks Jan
I don’t know. I just looked at their website. They have been there a long time and look well resourced – anything they are not doing they probably don’t want to do. I think we need to look to newer initiatives like RxISK, for example. The most important thing is not to get diverted from what needs to be said.
John – Thanks for your reply. Public Citizen is not in the black all that much and could do more with more $$. However, I was not suggesting anything that would get in the way of RxISK, which I consider wonderful and support financially, as I do the Foundation for Excellence in Mental Health Care. As for “what needs to be said”, one as-yet barely explored avenue is public demonstrations/street theater/international days of protest or some such. When I lived in the DC area, I used to dream of doing street theater in front of the FDA (making sure to get the media there)…
Get over it, big pharma too powerful, all we can do is be honest, and tell our stories………
John Stone,
The only ‘hidden power’ that Ben Goldacre wields is a medical degree. Do you have one yourself? Your assumption of conspiracies at the Guardian and Observer is a troubling indication of a conspiracy -oriented mind set. No editor of the Observer has been sacked, athough Roger Alton was strongly criticised for allowing a ridiculous alternative ‘doctor’, the ‘barefoot doctor’, to give ludicrous advice of the massaging your kidneys anti clockwise variety.
May I remind you that Dr Healy is glad his children had vaccines. Perhaps you would like to tell him how mistaken he was to allow this?
The war at Guardian Newspapers featuring Goldacre was reported here:
http://www.dailymail.co.uk/news/article-489574/Fear-loathing-Farringdon-Road–bloody-civil-war-The-Guardian-Group.html
The article about autism incidence was denied and withdrawn after the intervention of Goldacre and Fiona Fox of Science Media Centre although the figures were corroborated at an autism conference only a few months later.
In his article ‘The MMR story that wasn’t’ (published in both the Guardian and the BMJ) Goldacre wrote:
“First, it claimed that the lead researcher, Professor Simon Baron Cohen, “was so concerned by the one in 58 figure that last year he proposed informing public health officials in the county.” Prof Cohen is clear: this is inaccurate and scaremongering.”
Baron-Cohen, himself, responded to the article in a letter to the Observer:
“The research is based on a study of Cambridgeshire children, which ran for five years. It has not yet come out with a definitive figure on the prevalence of autism and it is therefore irresponsible to single out one figure.
“The best estimate of the prevalence of autism is the 1 per cent figure published in the Lancet in 2006.”
Yet, only a few months later, Baron-Cohen was to unveiled a rounded figure close to 1 in 58 (1 in 60 to be precise):
“Conclusions: The prevalence estimate of known cases of ASC, using different methods of ascertainment converges around 1%. The ratio of known to unknown cases means that for every three known cases there are another two unknown cases. This has implications for planning diagnostic, social and health services.”
http://www.ageofautism.com/2009/04/autism-the-64-billion-dollar-a-year-question-for-simon-baroncohen-ben-goldacre-fiona-fox-and-autism-.html
I don’t know whether David Healy has such benign opinion of Goldacre. Institutions must be made accountable and even people with medical and science degrees lie and mislead. I think we should be allowed to discuss whether we are being told the truth without jibes of insanity. It is a very easy and cheap trick to pull.
My children were vaccinated and were fine so I’m glad about it doesn’t mean that I don’t believe it can go wrong. It doesn’t mean that trial data isn’t hidden and it certainly doesn’t mean that some people haven’t suffered serious harm, because they have.
I’ve taken ibuprofen and been fine. My Dad is due to have surgery to remove part of his intestine due to damage caused by taking ibuprofen.
“May I remind you that Dr Healy is glad his children had vaccines. Perhaps you would like to tell him how mistaken he was to allow this?” Your comment to John.
I don’t get why you’re bringing Dr Healys childrens vaccinations into it or saying things to John about a paranoid mind and what would he do if he got cancer. Why would DHs children’s have any bearing on John’s views and how childish the above comment is, why would John need to do that. Dr Healy is great but he’s not God, John is allowed to have differing views to him as is anyone on here. Doesn’t mean we aren’t all singing from the same hymn sheet though.
I don’t think you even read Johns comments properly, you can’t do. You have just made your mind up that he is totally against all medications and medical care and that’s that. Because your narked at him for challenging you on the other post you jump in with hostile, sarcastic and quite often totally irrelevant remarks to his comments.
Everything’s fine with your medication, your doing well on it. Your not a medical professional looking for info or points of view. Your happy that you can trust in your medical care. So why did you come on this blog …
Lisa,
The reason I asked the question about cancer was in the context of a discussion of rejection of ‘expert advice’. As John Stone was one of those readiest to do this I asked would he also reject the advice of a medical oncologist. This is quite a reasonable question, even if John Stone is reluctant to answer it. I think that his assumptions about Dr Ben Goldacre and the Guardian are evidence of a conspiracy theory mind set. And that’s it as far as I am concerned.
Deirdre
I still don’t understand where you are coming from or why you are here.
Also why do you seem to think it’s all or nothing. Just because someone rejects some ideas or theories doesn’t mean they reject them all.
I personally would never in a million years take SSRIs because of what I’ve seen but if I had cancer and was dying and had the chance of life I’d have the treatment. I don’t have to reject all medical treatments because I choose to reject some.
As I’ve said before you seem to have the mindset that everyone on here is against all medical treatment and advice. It’s not that black and white.
Oh sorry, please explain? I dont understand what Deidre? is trying to say…. If you have cancer, you see it in scans, you know the white count is high, etc etc? I dont know if this is what you mean? But for mental illness the experts, are witch doctors, who gather, make up new diagnosis, and get paid by big Pharmaceutical companies….. These experts, from being classed as idiots in 1970s, suddenly become ëxperts”, called bloody good publicity, fraud, and greed.
Response to Lisa,
I was talking about rejection of expertise, on which John Stone is very keen. How far would you go in a cancer diagnosis? Would you insist on seeing every biopsy and analysing the details yourself?
John Stone implicitly rejects the expertise of Dr Ben Goldacre (who has, as it happens, written a very good book attacking the pharmaceutical industry ‘Bad Pharma’). John Stone disagress with Goldacre on autism, hence his hostility.
But I don’t reject expertise. It is bizarre how Deirdre has become an expert on me. I am however aware of sources of bias some of which involve hostile comment in the media of which Goldacre is a past master. And it is useless to talk about it because whatever examples I produce she will simply attack me (ad hominem) and side-step any evidence offered (nor do I particularly want to go on). However, I don’t think I am the only person here who regards Goldacre as an ambiguous figure, notably over brokering the All Trials deal with GSK to enable them to continue to bury the evidence of harms from their products.
https://davidhealy.org/sense-about-science-follow-the-rhetoric/
It is good that Deirdre is here. Too often people only engage with those in their own ideological clique, thereby entrenching the misunderstandings between those cliques further.
From her words here I perceive that Deirdre has been duly brainwashed by the authority system. She doesn’t understand that medical schools are brainwashing centres financed and controlled by corporate profiteers. She should consult such books as “Deadly medicines and organised crime” by Gotzsche, “Cracked” by James Davies, and (need I mention here) Pharmageddon by DH. In my experience people with medical degrees are far more clueless about health science than are those without. Which could explain why David still favours his children being vaccinated (re which see great recent book Dissolving Illusions.)
Deirdre also makes the mistake of reckoning to assess in terms of personal qualifications, when a more competent procedure is to evaluate a contribution on its own terms.
Deirdre further expresses disdain for a “conspiracy mindset”. Anyone who has actual inside experience of politics, campaigning, lobbying and backdoor corporate life is well aware that conspiracy is not some aberration but is the norm. The notion of lunatic “conspiracy theories” has been promoted by the media as part of the corporate propaganda to put the public off the scent. Again these books show you much detail of the conspiracies that go on. Of course there are some daft theories such as chemtrails and haarp and so on, but these are greatly outweighed by the ugly boring sort that really matter and which the corporate-controlled media are allergic to mentioning.
Re Ben G, you can read elsewhere about his very peculiar biography and mysterious “day job”. His writing is heavily preoccupied with character assassination of wonderful people. Yes his Bad Pharma book is good but it makes a bizarre contrast with Gotzsche’s Deadly medicines book on exactly the same subject – he appears almost sedated about the outrageous criminality.
Conspiracy? Not even needed.
Incompetence, perverse motivations (money and prestige), wishful thinking, and peer-pressure explain everything.
“Incompetence, perverse motivations (money and prestige), wishful thinking, and peer-pressure explain everything”
No, far from it. There’s a lot that goes on in medical and in other fields that is deliberate trickery to deceive. Just one example of many, the second CoT report against vit b6 was carefully contrived to deceive policymakers. Adelle Davis’s supposedly “last book” (Let’s stay healthy), very conveniently published after her death so she could not challenge the total, calculated, misrepresentation of her exceptional expertise. The list is long. Some such has already been indicated by David H here.
More will be in my book on expertise.
There is a lot to learn on internet drug forums. In researching Valdoxan, aka agomelatine, I found various sites where mainly young people carry on technical discussion of neurotransmitters, symptoms, side effects, and psych drugs. They seem to believe that their skulls are cauldrons, their brains are zesty soups, and that they can sprinkle in the right combination of spices in the right amount and set themselves right again. Some are housebound, others are bedbound. Many do not work or go to school.
I read the posts of young man on socialanxietysupport.com. His story nags at me. He is someone who is hook, line, and sinker invested in Harmageddon. He says his diagnoses are major depressive disorder, anhedonia, and anxiety. What follows is his blow-by-blow account of finding a new pal, Effexor, and some of her friends and relations.
/begin iatrogenic mania
1. He has just gone off Zoloft and Abilify and gone on Effexor:
“My anhedonia has been horrible today. And i’m just feeling kinda blah. I’m assuming this is either as a result of Effexor or the fact that I’m at that point where abilify is pretty much out of my system. At least the main drug, its metabolite may still be swimming around in lower concentrations. Zoloft is definitely completely out. I took some DXM and will be taking a small dose of oxycodone 5mg to help with the anhedonia. It’s just really bad today I’m hoping that as time passes things will stabilize. I’m going to the doctors this Saturday and i’m going to really try to put my foot down with this slow dosing protocol. She’s expecting me to be on 112.5mg but I have been on 150mg as I refuse to go on a lower dose and just get the SSRI effects. 150mg it apparently already starts hitting NE but not that much.”
2. Then physical side effects:
Today my neck muscle has been twitching a bit. It coincidentally happened after I drank a buttload of coffee. Maybe I need to hold back on the coffee till I get accustomed to the increased norepinephrine.”
3. But he wants a higher dose:
“Woot! I convinced my doctor to put me on 225mg Effexor. It’s all about saying the right things.”
4. His own Doctor Roberts:
My doc rocks. She’s willing to prescribe me Xanax and you name it. I told her I’d like to be able to approach girls better and asked if Xanax would be good and she was willing to prescribe it but then she suggested propranolol and says she knows people who took it for performance anxiety and it worked great, so I agreed and now i’m taking that as well heh.
5. The his doctor adds propanolol:
She said I can take it every day but I rather take it as needed. I don’t want to mess with norepinephrine as it’s implicated in anhedonia. Although oddly enough propranolol can increase norepinephrine release but since it blocks beta receptors it only has an effect on alpha receptors.
6. The bloom is off the rose:
Took 225mg today and I feel weird like there’s a slight pressure in my head, hard to explain, it’s barely noticeable. I’m also yawning a lot. Checked blood pressure and clocked in at 125/82. Everything seems fine. We shall see what a week or two on this dose does.
7. The more the merrier:
I’ll only add Zyprexa if the Effexor doesn’t do the job, but I’m going to give the Effexor at that dose at least 4-6 weeks. Zyprexa is great can increase dopamine in lower doses but it also seems to wreck havoc on other stuff.
8. Welcome, havoc?
@everyone yah so today I start olanzapine [Zyprexa] 2.5mg. I notice that the Effexor is already doing some stuff on its own as last few days I’ve had some moments where I had some interests back, they didn’t last long but it’s a good sign.
9. He ups his Effexor dose on his own:
375mg has been great, motivation flowing out my ears!
10. Someone asks him about Effexor:
“I came across something about effexor potentially botching up your brain permanently. should I be worried if I try it?”
11. He has it under control:
“Fear mongering if you ask me. I have been on 375mg Effexor and this is the dose for me. It’s awesome!
12. He starts the propanolol:
Ahh I actually didn’t get sleepy today and I took 20mg to test it out. I actually had quite a lot of mental energy and still do.
Then he leaves that thread and drops from sight.
13. Six months later, he is on another thread, and on Parnate (an activating MAOI), melatonin, Benadryl, and Zopiclone:
Today I cleaned the hell out of everything, looks like Mr. Clean’s shiny bald head. And man I feel so good after doing it. It’s very rewarding now. I look at my accomplishment and feel really good! Like seriously really good, almost euphoric. What the hell lol. I’ve never felt like that after cleaning. Maybe because it also involved some exercise too with tonnes of insane scrubbing and vacuuming and such.
14. Insomnia 🙁
I can fall asleep easily but I get woken up in the middle of the night from 1am-4am. So what I do is keep a tiny bit of zopiclone by my bed and when i wake up I pop it and can go back to sleep. To get myself to bed all I need is melatonin. But yah when you wake up at night and won’t be able to sleep anymore, you feel it. It’s like you get this surge of energy. So I know if it’s just a typical waking or a parnate wakeup. So that’s been working for me hence not seeing me here at 1am in the morning lol.
15. Elevated Mood II:
Even just talking to everyday people doing stupid things, I call them on it. Yesterday some guy left his push cart in the middle of the empty parking spot beside him. So I came up to him and asked him is he really that lazy that he will not allow people to park there to save 1 minute. He agreed, apologized and went back with it.
16. Alcohol and Parnate do not mix:
My next opportunity to drink will be this upcoming weekend so will see how it goes. I also need to be energized in bed that weekend if you get my drift, so maybe rockstar vodka? hehe.
/end iatrogenic mania
That was his last post on the site, made in December 2013. He lives with his parents, so perhaps the come-down won’t be too devastating.
My heart goes out to him. His doctor must be on multiple drugs herself. I wish I could message him, but the vodka post was his swan song, and I am just a fear-minger anyway.
Thanks for the laughter … 🙂 haha rofl xxx damn I thought I had discovered the “real world”on my dothiepin, I was flyin, thought everyone must feel that good, like I must have been sooooo depressed my whole life… buggar, then the crash … Reality check. But while your flyin, you dont see it… oh dear
When I was young and had not long started my career with psychiatrists they had me on Stelazine tablets and Disipol for the side affects. My husband was ill and carelessly I had run out of the the side affects tablets. Slowly after continuing with the Stelazine my neck started to pull to one side and then my whole body contorted and I ended up like a spastic.
I went to work that morning and had to leave walking down the street and finding a shop keeper who rang an ambulance to take me to the infirmary where I hoped they would have some Disipol in stock but they didn’t. So I ended up for hours sat in a wheel chair until I was brought home and somebody came with the drug and within a half hour the whole contorting of my body stopped.
This is the severity of these horrific drugs on people and how careless doctors are with their prescribing of them. This should never happen along with so many lives destroyed and my son’s is now one of them. Unable to leave his flat and virtually house bound he is a mental and emotional wreck. Nothing I can do or say will stop this from continuing as he is still on these prescription horrors.
Frightened of mania caused by them also and I have to stand by and watch his life destroyed and heading downhill. If I was a witch I would put a curse on the drug companies and their evil operations to make money out of people’s misfortunes.
My heart goes out to all suffering from these evil toxins. People who just through no fault of their own found they consulted a doctor at one time or another and became a victim.
Regarding publicizing the harms of the drugs, it might make sense to center the message on akathisia, which is partly a movement disorder, rather than the usual mania, depression, psychosis, violence, financial ruin, and suicide.
Because it is a movement disorder, the drug-naive cannot write it off as a relapse into pre-existing mental symptoms.
(I do agree that the sexual side effects are cruel and potentially devastating, but like Ang, I am in awe of akathisia’s unique and magnificient terribleness.)
Akathisia is a massive scandal.
So true Carolyn. I never had any mental problems, until 35 (yep 8 weeks after the poisons)….a doc put me on double dothiepin dose, 8 weeks later I had mania, seizures….. (Underlying bipolar, apparently)… more medication, next med caused me to have a deformed baby… (dont know what they say about that one, but took 19 damn years for anyone to listen).. yes, the sexual side effects destroyed my sisters whole damn life…….
But restless legs, running up and down stairs, running 5 km to hospital (and having them refuse service as I could not “sit down”at their triage desk… run 5 km home, and eventually have to ring an ambulance, and meet them running down the highway in my socks…. end of any reputation I had left…… but damn only way to get “knocked out”for a few hours. And damn I am 55. i dont usually run marathons? I am terrified of hospitals, but damn more terrified of this horrific inability to sit still…. while my brain was firing in all directions… pure horror.
Been there done that! The barefoot run down a highway at 1am to escape a murderous friend in the throws of her own Effexor freakout, hoofing it another time to an emergency room during an Effexor discontinuation near-psychosis and freaking out once I got there and leaving without getting help.
To hell with underlying conditions. They were staying hidden pretty well until Effexor went on its rampage.
If someone took LSD, meth, and PCP and did some wild/crazy things, would that be due to an underlying condition?
If two people take psylicybin, and one has a mystical trip and the other one just sees the carpet breathing, does one of them have an underlying psychosis? The carpet watcher is having the atypical reaction. Is he mentally ill?
Reactions to drugs differ among individuals.
Did you see the news about the former air force guy who discontinued some psych drugs and ran around his apartment building naked, until a cop shot and killed him? They said he was “bipolar.” But I don’t think he would have had that nice fancy uniform and military career if he had been prone to mania or depressive episodes. More likely the military/VA put him on ADs overseas or over here, for depression,,anxiety,,or PTSD, which led to symptoms of mania, which led to a bipolar diagnosis and antipsychotics, anticonvulsants, soporifics, stimulants, and antidepressnts. (At a guess.) On all that filth, he would have felt like the Pillsbury Doughboy inside and out, discontinued the drugs, and launched himself up past the moon.
Yes, military are routinely put on these drugs. More USA military kill themselves, than are killed in war. I think it is about twice as many. Never happened after WWI, WWII.
Very well put mr. James Bennet, it’s Amazing how you seem to adress almost all issues I face.
Quote: “But, problems can develop more gradually over time. Coupled with polypharmacy and multiple dosage changes, the issue can become clouded and there is less chance of the treatment being called into question.”
Also, the gradual Changes of a “numbed out” person, is not at all that easy to see for the individual himself. Many of the behavioural and cognitive Changes I’ve gone through would have set of the whole range of alarms if it weren’t for the “numbness” and “I don’t care-attitude” that the medication itself brought on.
Onward in your article you discuss the “pro/anti” Groups that has emerged, and you highlight how both Groups are legitimate, in most cases. What we need is the merger of the two Groups to:
For all to understand that sideeffects will impact a person in a very negative way AND a successful medication will bring positive effects on that individual.
And that BOTH outcomes can come from the same medication.
This means that my sideeffects aren’t reason enough to say to Another person not to use Seroxat, but I have the right to warn him.
And equally; a successfully medicated person should not dismiss my sideeffects just because he hasn’t suffered them. But he has every right to tell me Seroxat did good for him.
Bravo Ove,
Your comment is exactly how I feel.
If I said to people ‘ look I know most people are fine with this hairdye or whatever consumer goods, but I had a really bad reaction to it so I just wanted to warn you all that if you use it and your scalp starts burning, wash it off because I ended up with 1st degree burns. I wouldn’t be ridiculed, treated like a liar and put into a category of anti beauty products. But dare to tell the truth about what SSRI can do to some people and your labelled afantasist and you will get loads of people who will deny what you saw with your own eyes because ” they never had a problem “.
I saw a post on a forum, a young man with the same condition as my son was being started on venlafaxine and asked about side effects. I trod very carefully and in my reply just said that my son didn’t get on with it and for the young man to taper slowly if he came off it because my son had a severe withdrawal reaction. That’s all I said and within seconds there were comments coming thick and fast ‘ don’t you think it’s hard enough coping with this condition without people like you making us worry about our meds’ and loads of comments telling him to ignore me because they had no problem with the meds and even that it was due to people like me that Pharmaceutical companies won’t research into that condition !! That bit flabbergasted me. My son’s condition is an orphan disease that’s why there’s never research because there’s not enough money in it for them.
Being affected by severe side effects is a very lonely place for the victims and the people who love them.
Yes it’s lonely to be suffering the effects of SSRI.
I’ve tried about 4 different ssri’s/snri’s.
I was put on “Effexor” by one doctor, I Believe that is “venlafaxin”, that is the only time I was admitted to a hospital. (I admitted myself)
I didn’t know it then, so I blamed Effexor, but I was switched from Seroxat way to Quick. So it could’ve been withdrawal from Seroxat in combination with the new intake of Effexor.
I lost the “cognitive understanding” of my physical surroundings, I lost the ability to percieve what was going on around me. Plus an Array of strange/bizarre thoughts, so I asked to be admitted and to be put back on Seroxat. (As I said, I blamed Effexor then, totally oblivious that it could be withdrawal from Seroxat….)
I try to be very open-minded when I listen to people who have experienced sideeffects from ssri’s and psychdrugs.
I was once sentenced to 2 years in prison, just like I saw that your son was facing possible sentencing.
Plz know that if your sons behaviour was uncharacteristic to him, then it most certainly was due to the Chemicals in the pills.
He, nor you, will get recognition for it, but it was the pills.
I’m the “son”, and I have 2 loving parents who live in total disbelief to why I conducted myself in such awful manner.
Thank you Ove
People are driven to researching SSRI’s online predominantly because information is so severely lacking elsewhere. As James says mental health charities dont seem to be engaging in any kind of helpful dialogue around medications. It amazes me that given how prevalent psychiatric medications are in the UK and the huge numbers of people taking SSRI’s there is little conversation taking place about how these drugs work, how people may feel whilst taking them and advice about how to wean off. I contacted all the major mental health charities in the UK seeking advice for someone wanting to reduce an SSRI. All of them advised me to go back to my GP and therein lies the problem. If you have a good GP you might be fortunate to build a helpful dialogue but if you dont you’re left trying to find answers elsewhere. It can be a lonely battle. I think a great many people are being failed by a lack of information and resources and its frightening because people are at risk of being poly drugged for ‘new’ symptoms which as we know may be a problem related to an existing medication. Most of what I learned about how to measure liquid Seroxat and use an oral syringe came from online forums where people across the world had used a similar method. Online forums can be a fantastic resource for connecting with others in a similar situation to your own. Its a tricky balance though because the wealth of information can be overwhelming and everybody’s experience is unique to them. You have to remember that you are your own person with your own set of circumstances and medical history and you have to make decisions/judgements based upon your own body. People experience different symptoms in different ways and it doesnt make any one persons experience less valid but you have to hold that context in mind when looking for answers to your own questions. As James mentions there is also a lot of misinformation- so a part of online research is about sorting the wheat from the chaff. As a woman one of the things I worry about is misinformation around ‘SSRI’s in pregnancy’- hotly debated but the response you get around safety depends largely on who you talk to. The quest for answers online can often produce further questions and whilst its good to be inquisitive about your health, if you dont have someone who is able to adequately answer your questions the not knowing can perpetuate further anxiety. Its easy to end up chasing your tail about questions and answers. The ‘what ifs ” and “where do I go from heres?” Mental health services ought really to recognise that there are a group of people who need specialist advice around medications, sending people back to their GP can often be fruitless and GP’s dont always know whats going on. What you’re left with then is a group of people at risk of falling into a gap.
I had a baby in 1996, James Steven Offer………….. he died because I took zoloft for less than 8 weeks into the pregnancy. I reported it, everywhere. I have recently asked the Australian TGA….. to find my initial report (they have not returned my call as they promised)…I would say they have found it. 19 years later, USA people have the right to sue google Philadelphia and Zoloft……… 19 years they have ignored this, 19 years Zoloft have been causing heartbreak, death, and horrific baby deformities. Oh, way more evil than thalidomide.
Sorry for your loss Ang.
Yes, maybe these drugs help some, but sorry advertising on US television….? getting 1 in 8 addicted? Where are their morals? Greed, greed. Even the trials for these drugs done in Inida, have just been proven to be falisified? How many trials falsified (according to the EU and France who did the audit)… yeah, just google it…. 2700 trials WERE FALISIFIED, OUT OF 3000. We need to be told the truth so we can decide our treatment…………
Exactly right Ang.
Just because we want the truth and to be able to have informed choice doesn’t mean we reject all scientific knowledge and medical expertise.
My son has a fantastic Neurologist and Doctor and I value their expertise and knowledge. But they can only work with the information they are given about drugs.So when they are only being given the glossed over results and not the full data how can my son have informed choice over the drugs he takes for his condition.
He has to have the drugs to improve the quality of his life and he should be able to have the full picture of the risks so that he can make an informed choice.
If we had known the risks things would be very different. I’m not saying he wouldn’t have taken venlafaxine, his condition is rare and the meds are trial and error prescribed off label to find what helps. So he most likely would have still taken it but at least we would have been aware that the tapering is vital and should be more prolonged. We would have known what signs to look out for that indicate withdrawal syndrome and could have got help.
It’s ignorance that is the problem. We should all have the right to make our own informed choice about which medical treatments we want to have and all available data good or bad should be able to be used in making that choice.
Lisa, that really is what is most troubling–that the risk/benefit trade-off is intolerable and is not communicated properly (for benign and nefarious reasons). Disingenuous and fraudulent researchers create unacceptable drugs. Regulators, for reasons of their own, fail to detect and discredit junk science and junk drugs.
Renegades, outsiders, and the little people are chipping away at these problems.
There is hope.
Absolutely. The absurdity of not informing us “as it may stress us”, is ridiculous. I am not an idiot, and having a diagnosis of any mental condition does not automatically make someone an idiot….. however, it seems that any diagnosis like this, seems to make the psych all powerful, and I truly believe most psychs I have seen, enjoy this power, enjoy using us as lab rats, and not being honest…. they have seen the failures……….
trust has to be earned, none have ever earned my trust….
I want to understand and have a choice in my own care. My experience with ADs has been absolutely horrific. They have destroyed my life…..
I have been studying crazyboards.org, one of the explicitly pro-drug forums that have intrigued me since the Germanwings crash.
On crazyboards, they wonder how anyone can be anti-med.
Some of their guesses:
“If you take people who are already inclined to paranoia and who have trouble with delusional thinking and tell them that the pharmaceutical industry is conspiring with the government to control them and make money, many will believe it.”
(I think drug makers exploit government agencies, and that some workers at government agencies have conflicts of interest that weaken their integrity. I do not allege conspiracy; the symbiosis is organic.)
“i think there’s a mistaken idea that legal psychoactive drugs are “bad”, kinda the same sentiment as believing all illegal drugs are “bad””
(I think illegal drugs are pretty good.)
“Another thing […] about the anti-med view is that I think people are afraid of side effects.”
(As well we should be.)
“Are they scared the meds will dumb them down? Lessen their creativity? SImple meds like SSRI’s hardly do that. […] There are some side effects to medications, but they have other medications to combat those side effects.”
(Oy!)
“Their opposition is purely political and ideological. Many are MDs and phds though so they are seen as experts, regardless of the fact that the majority of experts disagree with them. They manage to get on talk shows and publish books which MI folks who aren’t sure about meds then see with really negative results.”
(My opposition is not motived by anything but information and logic.)
The pro-drugger (whose need for drugs might be iatrogenic) would think me delusional for believing that clinical trials can’t be trusted, and enable serious adverse outcomes, even while spending hours per day enduring side effects, describing the several drugs they tried and discarded, waiting like cargo culters for the next blockbuster to finally be approved and prescribed to them (and getting it and hating it), and generally seeming to be depressed, anxious, manic, or irrational, whether on or off drugs. It is a sad state of affairs and I do not mean to mock. It is what I have been finding all over the web.
The topic was locked after four pages. The staff there do not countenance the anti-med position and don’t want members to discuss it, explaining themselves like this:
“Uhh… you are aware that we are a pro-treatment site, yes? That, for the vast majority of people here, includes medication.”
Link: http://www.crazyboards.org/forums/index.php/topic/66463-can-someone-explain-the-anti-med-viewpoint-to-me/
Caroline – Interesting.
As for me, I wouldn’t go on such a website (as crazymeds), except to put my views in before they closed discussion. But I don’t have that kind of time.
Thanks for the link, was interesting reading. I actually found it was quite a balanced discussion, surprised me that many on that site actually did not like medication either, and understood reasons people chose not to medicate. The original poster was even questioned as to 50 meds, ect, hospital admissions.. certainly did not make meds look like a great option.
Activism is good. Why not bumper stickers – “Just Say No to Prescription Drugs”?
Why not flourescent pink/green little stickers with a skull and crossbones symbol crossed out (or buttons) to wear? Or even nice RxISK buttons to wear – to promote this wonderful service? Civil disobedience, like Code Pink at the APA and other public events?
The discussions here are excellent – don’t get me wrong – but there are other realms.
No need to feel helpless in the face of BigPharm.
Wearing anti drug t shirts? Such an approach is not what I would ever wish. I will write my experiences, but it is not my approach to tell everyone drugs are bad…. I believe in the truth being known, everyone has their own brain, as long as they are supplied with evidence in a non biased way…. I would never wear a t shirt as you described…
I would much prefer to be able to tell someone a success story, from getting off the drugs….
Deirdre,
Your comment in response to me included this question,
How far would you go in a cancer diagnosis? Would you insist on seeing every biopsy and analysing the details yourself?
There you go again …. because I want informed choice must mean that I would reject all medical expertise and knowledge.
If I was unlucky enough to be diagnosed with cancer, I would accept every bit of expertise there was to help me live. I would want to know the full risks and benefits of the treatments. I would want to know the results of biopsies and what those results meant for me.
But no Deirdre I wouldn’t don a white coat and start analysing the results myself because Im not an Oncologist so I haven’t got the expertise to do that… which is precisely why I would want the Oncologist to have all the available data on the drugs and treatments he or she is using.
And just for the record Deidre just because Ben Goldacre has a medical degree doesn’t mean that he doesn’t have hidden agenda.
In my opinion he is a token rebel and a pharma puppet but that’s just my opinion.
“pharma puppet”
I agree with that, Lisa.
Jan and Lisa–for Gods’s sake pull yourselves together and stop posting foolish abuse of someone whose work you suspect for dubious grounds. Have either of you sat down and read Goldacre’s ‘Bad Science’? Just because John Stone has posted a vacuous assertion about Ben Goldacre, suddenly he’s the enemy for both of you. This doesn’t reflect well on your judgment.
Diedre Everyone has their own opinion. I respect everyone’s right to an opinion’, no need to get abusive.
James’s post raises some really important and pertinent questions about online health information, support and activism. I have always used the internet as a source of info about the drugs I was taking, and remember Charles Medawar, here in the UK, who started challenging the accepted wisdom that antidepressants weren’t ‘addictive’ back in 2003 (I think?). He posited that people did indeed become physiologically dependent – and fought a long, brave battle to get Wyeth to accept withdrawal as a big problem for many people.
Reliable, unbiased information seems to me now to be less available: drug companies are cunning beasts and have adapted to an increasingly questioning, sceptical online community. They hide behind most of the big health charities – Alzheimers Uk, Diabetes UK. etc. It used to be easy to trace their sponsorship/input but has become much more difficult, and tends to be hidden on their websites behind ‘research’, or a brief mention of a ‘partner’ like the International Diabetes Federation: a body consisting entirely of drug companies….you have to be persistent these days to get to where the money (and influence) is. And have the time and energy.
I think it is sad too, when opinions become so very polarised. A respected psychotherapist, Philipa Perry, recently made a TV programme on Bipolar Disorder, shown here in the UK. She was very explicit about the fact that she was looking at the disorder from a psychotherapist’s viewpoint, not a medical one. Her ‘bias’ was completely open from the outset and she was careful not to trash medication as a preferred option for many people. The fury from the bipolar brigade was quite scary: to the extent that she received death threats via twitter. I know this partly derives from a perceived challenge to the choice to use medication to manage mood, and causes a defensive reaction – it’s the vitriolic nature of the reaction that troubles me. Although James makes a useful point, which made me stop and think, about the effect that brain altering drugs can have on one’s reactions to the things which upset us.
Each of us makes individual decisions about which help to use – and many of us use both medication and psychological treatments. I certainly did. The two are not mutually exclusive, and ‘bad’ therapy can do profound damage too. Online, it seems that medication and psychological therapy have become utterly separate. The internet seems to exemplify the old Descartian mind/body split.
I long for a ‘middle ground’, because so much valuable information risks being lost. All our stories are a rich source of invaluable data: why are some people so dreadfully damaged by psychotropic meds and others find them helpful? Why do some people have an instantaneous, devastating reaction to antidepressants? If we could look at what our experiences might be demonstrating about how drugs work (because they most certainly do ‘work’ in that they have an effect on our bodies), what harm they can do, why they sometimes help. What is the effect of taking them for a very short period, during a crisis, as opposed to for a very long time? High doses versus low doses. There are so many questions that need answers – which are never going to come from company funded RCTs – but just might be there, in the personal experiences of those who share their stories online.
Sally
Thanks for this. My concerns lie in an area you’ve noted – trying to understand why efforts to put the capacity drugs and vaccines must have to cause problems on the map run into a vituperatively hostile response. There seems to be a common patter with abusive ad hominem comments delivered under pseudonyms. It extends to efforts to get someone like me referred to the GMC – which is the core element in the Persecution series of posts of which these latest posts are a part.
The level of hostility and intimidation is such that it seemed to me not unreasonable to use the term Brand Fascism to capture elements of what’s going on. But I get the a not dissimilar abuse from the opposite side if I endorse the use of treatments within the mental health field.
The problems seem to become most acute in the vaccination field. This is partly understandable in that if a population needs to be vaccinated then its easy to see how the powers that be might decide the views of some conscientious objectors need to be overridden. But the extension of intimidatory tactics which just about might be legitimate in rare cases to the Flu vaccine and perhaps the HPV vaccine seems problematic, as does the soft power (soft intimidation of pharma marketing) that leads to so many to end up on powerful meds that can do a lot of good or harm but which they don’t need – and I guess you didn’t need.
We need your book
David
David,
In the field of vaccination, those seeing, for example, the MMR vaccine, as the cause of autism, are very agressive in their discourse. It is not unusual for a female contributor to a web site to be called a ‘Pharma Whore’, merely for supporting vaccination.
I note that Lisa and Jan in this blog have been happy (on no evidence, save a few insults and allegations from John Stone, author of ‘Age of Autism’) to call a perfectly respected GP, Ben Goldacre, a ‘Pharma puppet’.
Deirdre
See my response to Sally. As someone who has had hostile and vituperative criticism from both sides, I am not about to disagree with you on the point about some responses to the MMR issues. I don’t know where the viciousness started or where it comes from.
John Stone does seem to me to have backed up his points about some of the things that have happened on Bad Science. Others that I know of have been directly affected by the kinds of things he describes.
The autism question is deeply disturbing. We have gone from an incidence of 4 in 10,000 in the 1960s to 1 in 60 now – a forty fold increase. What do you think is causing this? I am concerned about a possible role of antidepressants that work on serotonin? Am I wrong to be so concerned?
As for Lisa’s views about AllTrials, these are ones I happen to share. The movement may be well-intentioned but it seems to me it is making a mistake of historic proportions and what’s happening does need to be scrutinized and questioned.
I have questioned AllTrials, perhaps close to over-vigorously, on this site in the past. I suspect I was more trenchant that may have been necessary because the point was one that I thought was not intuitively obvious and also it felt like swimming against a very strong tide.
Perhaps all those supportive of medicines feel there is a terribly strong anti-meds tide out there and equally those who have been injured raise their voices a touch higher because they think the pro-med tide is eliminating a middle ground and any possibility of being heard.
david
All I know is autism has gone from 1 in 5000 to close to 1 in 50, in my lifetime… why??? I didnt know they put lead and other heavy metals in injections, and we inject that in our kids? I have an opinion, my opinion is valid…. perhaps people should think, before they jab. I have four grandkids classed as autistic, (out of 9 grandkids), and damn never, ever heard of that in my family previously.
I am not the author of ‘Age of Autism’, I am, however, the UK editor of the on-line journal of that name. I don’t recall using those words about Goldacre, although I have written about his journal and web activites at various times. As a matter of fact Goldacre is not a GP he is technically speaking a junior (formerly psychiatric) doctor with an extensive career as an opinion leading journalist. It really clouds the issue (deliberately?), however, if Deidre persists in attacking me rather than addressing the factual substance of what I have written (everything I have written is sourced), or the All Trials business where David has been a leading critic of his activities and which have benefitted GSK.
I note that you are very hostile and aggressive in your comments Deidre. More so than anyone on here has been to you.
Pharma Puppet wasn’t a direct insult at Ben Goldacre more of a description of what Alltrials has turned him into. I don’t see him as the enemy at all. I just don’t think Alltrials however well intentioned has provided the answer to transparency. My opinion has nothing to do with Johns views, I am quite capable of forming my own opinion.
I did answer your comment about my impaired judgement and also asked you out of genuine interest why you were here on this blog ?
I and others have said several times that it is good that antidepressants work for you. I know people they work well for, I have no problem at all with that. That’s not even the argument !
The reason I asked why you are here is because of your hostility towards people who suffered greatly from severe side effects, I couldn’t understand why you are on this blog.
I so agree! My brother contracted polio and spent his 4th birthday in an iron lung. The vaccine came out a short time later. This prevented and still does prevent the once terrible childhood outbreaks of a disease which is almost never heard of nowadays.
But sometimes drug companies can’t leave well alone and they had to combine the measles vaccine bringing in the MMR combination, which my son never had. My neighbor’s son on the other hand had the vaccine and became damaged with autism. Also because of this he was prescribed anti psychotics as a child illegally in this country by a doctor.
There is nobody to fight their corner or any chance of compensation for their suffering. Denial by big pharma again.
I am not against medication but God knows just what you place your life into when you swallow a pill or are injected by something legal?
I’ve been a speech and language pathologist, off and on, for over 40 years. It’s only in these latter years that I’ve seen such an upswing in numbers of children on my caseload who fall on the autism spectrum. Working in the public schools these last few years, , I tend to get the milder cases (children deemed as having Asperger’s). Some tell me that these children would previously been deemed as “strange” . introverts, or some such. But I had no students like this back in the 1970s when I started my career. I doubt it could be something in the water because I have worked in so many states here in the U.S. So I have to suspect some outside source, though I am not up on the latest regarding vaccines. I was not practicing my profession in the 1980s…during those years, I was the COO of a hospital and a non-profit executive. But when I went back into the field in 1993, things had changed with regard to the profile of my students/clients. Way more children on the “autism spectrum” or outright autism, , as well as way more “medically fragile” children – who had been kept alive due to “advances” in the neonatal intensive care unit…
Deirdre,
Thanks for your response. As usual you’ve cherry picked the points of the comments with out actually answering any of the issues raised.
Yes I have read it. I’ve also read Bad Pharma and his blog. I think it all had good intentions. The reason for my comment was Alltrials I think has given Pharmaceutical Companies a way to hide data in a publicly acceptable way. They don’t have to be sneaky about it anymore they can do it under the guise of transparency and it is still them calling the shots.
So my view really has nothing to do with Johns comment about Ben Goldacre. I came to my own conclusions about everything I post on here because of the great interest I have due to my situation.
You’ve already said that you think everyone on this blog is anti medication. You make lots of comments about rejecting expertise. I respect that you have the right to your opinion even if it’s the total opposite to mine. It’s your hostile, and unsympathetic attitude I can’t abide.
If you wish to believe that I hold these views because I have impaired judgement and not because I’m a Mum with perfectly sound judgement who has watched her son’s life be destroyed then that’s what you’ll believe.
This blog has been the one place that I could come and feel free to talk about my son’s withdrawal without being judged. The one place I have found solace knowing that mine isn’t the only story to tell. Ill ask you again for the third or fourth time … Why are you here ?
Why am I here? That’s a significant question. It suggests that no one who has benefited from anti depressive medication should be on this blog. Very well then you’ve made your point, I”m leaving. Goodbye.
The notion that you have impaired judgment is not something I would suggest. So why call a GP a Pharma Puppet ?
I did not use the term “pharma puppet” lightly, having studied Goldacre’s support for AllTrials carefully.
AllTrials is clearly a new strategy by pharma to control clinical trial data under the guise of doing the opposite.
Reminds me of “1884”.
As for Dr. Healy’s mention of “soft power”, it reminds me of ads telling me the oil and gas industry is my friend, and that they are doing a great job of cleaning up the horrendous BP oil spill.
Jan
Thanks for this. A key point to note is that there is no input here from AllTrials defending their position. On this thread there is a group of us who are concerned. The AllTrials proposals look good but might not be and its one of those cases that suggests Pascal’s Wager on God turned inside out. If they concerns are right then we are in very big trouble so it makes more sense to be concerned than not.
For the record, in a series of posts here last June covering Sense about Science, Ben G did wade in and state these concerns were unfounded.
David
Re the point you make about the absolute impossibility of raising the matter of possible vaccine damage: Dr Malcom Kendrick makes exactly the same point in his recent book; ‘Doctoring Data”. He holds no brief for Andrew Wakefield but deplores the level of vilification he was subjected to – and more importantly that no one now dares mention the subject. The exponential rise of autism is undeniable, something, or a number of factors, must be ‘causing’ the increase. We now have a situation where informed, innovative, creative thinking about possible correlations can’t happen – because those who dare, will be publicly excoriated. Hence – saving children from a desperate, lifelong condition is set back indefinitely.
I honestly don’t know how one returns the scientific, academic, medical, patient, research communities to ethical debate of important issues. By ‘ethical’ I mean without the vituperative attacks to which you have been subjected David. Attacks which are deeply personal and threaten your professional career. More sinisterly too – one never really knows who is behind the abuse. This creates an atmosphere of insecurity and fear for me. I became really spooked by one anonymous person who has been unilaterally amending Wikipedia pages on drugs, the pharmaceutical industry and its critics. And, at the risk of coming in for some criticism myself: I am continuing to write my account of life in the mental health system. I am fairly acerbic about many aspects; drug damage, psychiatrists, nurses, chronically awful therapists, neurologists. But I have cut out the lighthearted description of my experience with service user activists. Activists, not the many friends I made amongst fellow patients. I am too frightened of possible online repercussions. How insane is that (!). I know that I wouldn’t cope with personal attacks and simply couldn’t take the risk to my health. But it means that an important aspect of being a patient won’t be in the book because I’m too intimidated – by people who were my ‘colleagues’ in the mental health system. Even before I’ve finished writing the damn thing.
Dr Kendrick IS a GP. His website is easily accessed by googling his name.
Well, I hold a brief for Andrew Wakefield (not professionally of course) since many lies had to be told and repeated in order to sink him (way beyond vilification).
http://www.ageofautism.com/2015/01/upworthy-lies-about-the-wakefield-lancet-paper.html
And if it is necessary to do this to him to maintain public deference people might like to reflect on the kind of politics involved. Most importantly what was really being targetted through Wakefield were the families with a story to tell. Meanwhile, governments all over the world are busy not finding what causes autism, or what relieves it -a decade and a half has been wasted, millions more children have been diagnosed when the answers are staring us in the face (toxic overload from many modern sources including vaccines).
Incidentally, it was part of Goldacre’s problem that he had realised contrary to Evan Harris and Brian Deer that the Wakefield paper was perfectly alright but when the GMC brought in its nonsensical findings like a lot of other people he held his tongue. In BMJ I commented:
“The panel stated in the short version of their findings on fact read
out to journalists at the GMC last month…:
““The Panel has heard that ethical approval had been sought and
granted for other trials and it has been specifically suggested that
Project 172-96 was never undertaken and that in fact, the Lancet 12
children’s investigations were clinically indicated and the research partsof those clinically justified investigations were covered by Project 162-95. In the light of all the available evidence, the Panel rejected this proposition.”
“However, it is my understanding that 162-95 was not a “project” in
any normal sense but the ethical approval granted Prof Walker-Smith on his arrival at the Royal Free Hospital in September 1995 – as probably the most senior figure in British paediatric gastroenterology – to retain biopsy samples from colonoscopies for research purposes. If this is the case it would seem a basic criticism of the panel, that in reaching their view, they did not explain why this ethical permission did not obtain in this instance. We are also confronted by the oddity that the panel having concluded that the study was in fact project 172-96 then found the three doctors to be in breach of its terms at every twist and turn, instead of drawing the more obvious inference that it wasn’t 172-96 at all, but an
“early report” as stated. (And this, incidentally, is why several of us
think that Ben Goldacre had it right in the first place.)”
http://www.bmj.com/content/340/bmj.c644/rapid-responses
Everybody who knew about it – including Goldacre – knew it was a farago. In the end the central proposition of the case against the three doctors Wakefield, Profs Walker-Smith and Murch was tested and found to be false in Walker-Smith’s appeal but anomalously the disproven findings stand against Wakefield and Murch. And all to protect policy.
I’ve read Bad Science and Bad Pharma, I’ve watched the Ted talks and I’ve read quite a bit of badscience.net. I signed up to alltrials and I really did think that Ben Goldacre could be the man to bring these issues to the mainstream. Instead what did we get? Statins have no side effects!
I’d noticed a few things before then, but I gave him the benefit of the doubt. Just little things, like when discussing the problems with antidepressants he always ended up talking about Reboxetine… yeah you know, that household name antidepressant that everyone’s having problems with…oh wait, sorry, wasn’t that one called Sexorat?
Bad Pharma told us nothing we didn’t already know – that industry trials were pretty rubbish, and much of the evidence for the drugs we take today is unreliable. But the strange thing is, these serious problems with the evidence don’t seem to come with very many consequences, maybe Vioxx, which is already withdrawn, or Reboxetine, which is virtually irrelevant, but never a blockbuster? Didn’t you know that Statins have no side effects?
In Bad Science and his writing in the Guardian, Ben explained to us how dangerous it can be when the media sensationalize science and plaster it all over the headlines… and then his name ends up attached to one of the worst cases of this I’ve ever witnessed. I’ve worked in print media for 20 years, and you don’t get blanket coverage like that without someone writing a large cheque. That’s not conspiracy, that’s just the media business. It’s also probably why the BBC was only main news channel in the UK not to run the story as headline news.
So that’s just a couple of problems I have with Ben Goldacre, and that’s before I even touch the much more complicated issue of the lobby group Sense About Science.
It all reminds me of the story of Jing Ke’s assassination attempt on the King of Qin, which is the subject of the movie Hero. Jing Ke was only a hero if you were sympathetic to the aims of the Qin Dynasty, which was to be the first emperor and ruler of “All under heaven”. It’s impossible to say if Qin was right, because its impossible to know if the people of China lived a better life over the next 1800 years than they would have under Independence. But the point is, Jing Ke was a puppet and a hero… which one he was depends on where you were standing.
Neil – I know little of the blow-by-blow regarding AllTrials but reading the statements about it, I thought of the music man….” I yam who I yam, and because I yam, just follow me”.
Such drum beating, saying – in essence – suspend all thought and judgement because I know most everything – immediately puts my antenna up.
Statins do have side effects. Transient Global Amnesia as experienced by Dr. Duane Graveline can be very serious. Do pilots take statins?- See Duane Graveline’s website.
Now the latest research has linked long term statin use to Parkinson’s disease.
I must admit I haven’t read Ben Goldacres views on statins. Perhaps, he is too young to take them but all the high profile doctors of a certain age probably do. Which is very worrying because their cognitive ability could possible be impaired.
I know when my diabetic Mum was prescribed statins for her slightly elevated cholesterol she felt so bad she insisted on coming off them. She said she felt really down and kept getting pins and needles in her hands and feet that was in the first week. After a couple of weeks she told me she was having weird thoughts about dying. When I asked did she mean as in killing herself, she said” no I don’t want to do that, I just keep thinking it might be better for everyone if I wasn’t here ” She said she was having intrusive thoughts about death that she kept thinking about going to the train tracks near where we live and just lying on them. My Mum is a pensioner who has no history of depression and I’ve never in my whole life heard her say anything like that before. Luckily she herself realised something was wrong and told her GP she wanted to come off them. She already had a very healthy diet because of her diabetes and the next cholesterol test she had was within the normal range. She hasn’t had these thoughts since stopping statins.
I don’t have a problem with SSRI’s per se, or psychiatry, or even the pharmaceutical industry, but I do have a problem with over-diagnosis, the abuse of the ‘mentally ill’, the drug companies (in collusion with academia/psychiatry) covering up dangerous side effects. I also have a problem with senior figures in … the Royal college of psychiatry, who are powerful, well fed, and on the well oiled side of the gravy-train, and everyone knows which side their bread is buttered on- at the end of the day don’t they… me.. I’m just fodder, and road-kill – we are subjects of this system and the establishment people don’t see us as fully human- we are merely fodder, statistics etc. We exist on the other side of the divide which they create. We are ‘other’. They exist on the rational, reasonable, logical, scientific side of the paradigm. They are part of the power structure, they diagnose us, they judge us, they decide. Our opinions are not given any value because we are the subjects, the’ other’, the observed, labeled, judged, mocked, and ultimately humiliated. To give us voice is to give us power, hence why they don’t engage with us….
<>
Exactly, truthman.
Which is why we must sieze the microphone – through social media, street theater, civil disobedience.
I remember the week many of us spent in Lafayette Park, across from the White House, in 2005. No media. Such an opportunity missed. But that wa sthen…if such a thing were staged now, self videos might well go viral…
I agree with pretty much all of that except that when it comes to psychiatry and the gravy train, I think its more complicated. To me the Royal college of psychiatry are fighting for their survival.
If scientific experts become the unchallengeable gatekeepers of the truth, and their method for finding this truth is the hierarchy set by Cochrane, with RCT’s as the gold standard (which it needs to be for psychiatry in order to dismiss all the anecdotes that contradict the ‘accepted evidence’), …then psychiatry’s only claim to the club of experts more or less becomes psychiatric drugs and the RCT evidence surrounding them.
With the literature around SSRI’s being questionable at best, and even prominent members of Cochrane questioning the efficacy of SSRI’s while heavily criticising psychiatry, you can start to view psychiatry as being in a bit of trouble, and effectively caught between a rock and a hard place.
In other words… with RCT’s in place as the unquestionable truth, imagine alltrials achieving its main goal to everyone’s satisfaction – trial data fully exposed to scrutiny… all of a sudden, psychiatry could find itself on very dodgy ground.
Psychiatry has long been in trouble, and it still is a gravy train. There are a lot of people making money from the mental health industry, and it is an industry now- make no mistake about that… Without drugs, what would psychiatry be?
A nice piece by Simon Wessely about Ben Goldacre
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)60588-8/fulltext
Although I do question whether the MMR vaccine is as safe as we are led to believe, regarding autism, may I suggest that we need to take ‘foetal alcohol syndrome’ into consideration when looking at the increase in numbers.
Hello re: foetal alcohol syndrome. I come from a very healthy family… 12 on my mothers side, 12 on my fathers side. No known problems… All long lived. We all had maybe five immunisations. My children had about 15. My daughter has asthma, triggered by allergies. First in the family. I now have 9 grandchildren in two families NEITHER DRINK ALCOHOL. These grandchildren have followed the modern immunisation schedule? God knows how many immunisations, about 45? in mixed cocktails? I HAVE FOUR AUTISTIC GRANDCHILDREN…….. Why?? Now they have decided everyone has to have all the immunisations, or you dont get government payments that EVERYONE IS ENTITLED TO. I am horrified, after watching some videos, that these immunisations contain, detergent, formaldehyde, aluminium, mercury. and now in USA they do a first injection in a baby before it is even 24 hours old, for HEP B, which a baby is not going to catch… How obscene. And we thought Hitler did experiments on people, without their consent? It is happening NOW>
“There are so many questions that need answers – which are never going to come from company funded RCTs – but just might be there, in the personal experiences of those who share their stories online.” – this site holds a collection of VERY many personal experiences of SSRI/SNRI/AP withdrawal – would be great to have these people contribute to RxISK etc – http://mentalhealthdaily.com/about/
Hello Rob, please, please join the site surviving antidepressants list all your writings or links there, would be so, so helpful for all of us in withdrawals, or us trying to get stable on drugs, with a hope perhaps one day to be drug free. We do what we have to do to survive.
as I said, I do question the safety of the MMR vaccine – I was not stating that it is not causing problems! However, here in the UK at least, I do feel that alcohol is causing very real damage to unborn infants who are then diagnosed as autistic later in life.Of course, we are talking big business here again and ,because of that, nothing is likely to happen through government to lessen the number of cases.We also have to consider the changes in diagnosis – I taught for 40 years and during that time only the severe cases were diagnosed as being autistic.Recently, more money has been provided to deal with autism here in Wales and the numbers diagnosed have shot up!Back to the MMR – I did teach a young boy who, I have no doubt, had been damaged by the vaccine.He had developed in exactly the same way as his 5 siblings until he was immunised with MMR – he then lost all his language skills both verbal and understanding. He was diagnosed with Specific Language difficulties – any mention of MMR damage was discounted by the authorities!One of our sons suffered terribly on Seroxat – so I do know and thoroughly agree that, for many people, these strong medications are lethal.
Yes the drug companies play with us….. Now, I would prefer to trust my own judgement, and would not immunise. But I am 57? Reality? this day and age, no one is willing to take responsibility, like parents have no faith, in anything, so much easier to trust a doctor, and absolve oneself from any commitment, decision, whatever. Easier to trust a doctor, the “schedule” whatever, than taking the time to investigate, analyse, and be responsible for a logical decision. Thankyou for your observation and honesty. And your observations of the boy damaged by vaccine? Bet his parents never recognised the obvious link….