Emotionally Unstable Brand Disorder
Editorial: James Moore on his Let’s Talk Withdrawal site has recently posted the following. The reason to reproduce here is that it seems to overlap so much with the Peter Goetzsche Affair – see below. In both instances we have an ex-Collaboration in one case and almost ex-College in another more concerned with their brand and business opportunities that with the integrity of the data or the wellbeing of patients. See what you think.
Almost Ex-College
I originally wrote the opinion piece below following a social media event organised by the Royal College of Psychiatrists in August 2017, but at the time I decided against sharing it. Recent events have conspired to make me reconsider.
On Tuesday, November 20th, the Royal College of Psychiatrists participated in a video made by the BBC entitled “End pill-shaming in mental health”. In the video, Hannah describes her experiences of enduring criticism for taking medication and being mentally ill. Also, the RCPsych President, Professor Wendy Burn, shares the story of putting a 70-year-old gentleman onto antidepressants.
I thought that Hannah was brave and eloquent in speaking about her experiences and we can all benefit from hearing real experiences both good and bad. But, dear BBC, where is the balance? Where is the person harmed by the drugs? How can we let the viewers know that there is a range of opinions on this issue? Was anyone from the prescribed harm community even allowed a single comment on the video?
So it pains me to dust off the following piece. After I wrote it, I thought more of it and decided never to post it. The BBC video made me reconsider because, ironically, it seems that a professional medical body is content to shame and stigmatise those people – including patients speaking from personal experience – who point out the drawbacks of psychiatric drugs.
Shaming, stigmatisation and scaremongering
On July 31st, the Royal College of Psychiatrists asked for questions for a Twitter Q&A on ‘the facts behind antidepressants’ to be held on August 3rd2017. This was precipitated, in part, by the BBC Panorama documentary, A Prescription for Murder? broadcast on Wednesday, July 26that 9pm.
I welcomed this, a chance for those harmed by psychiatric drugs to ask questions of a profession that can come across as aloof and distant. An opportunity to fully engage and discuss pros and cons side by side.
The Royal College asked that questions were submitted using the hashtag #ADsMythBuster. With a tiny number of exceptions, the questions were polite, restrained and not personal in nature.
No sooner had we started than those with lived experience of withdrawal and dependence were accused of pill-shaming, scaremongering and stigmatisation. Why, because we have an opinion that differs to the mainstream? Are we singled out because our views are challenging or potentially upsetting to those that believe in their drugs? Are we called out because we really are just a collection of opinionated shamers, scaremongers and stigmatisers? What could the motivation be for someone to question our response to increasing levels of mental distress across the UK, does it serve the public interest or self-interest?
There is no amount of evidence that will change a closed mind, but I feel it necessary to stand up for myself. I write as someone who was prescribed a psychiatric drug without any opportunity to be able to weigh up the pros and cons, because I was never told about the cons and the officially provided information downplays the reality. In addition, once I started to struggle to come off the drugs, I was told the fault was mine and that I was alone in having such difficult experiences. The options for help presented were simple; ‘increase your dosage’ or ‘add an antipsychotic to your antidepressant’ when my expressed wish was to come off safely.
Why should my experience be invalidated because it bumps up against a mainstream view? Why should the damage to me, my family, the loss of my career, my self-worth, my esteem, be kept quiet? Why should the refusal of the medical community to acknowledge problems that they themselves caused remain unchallenged?
Let us be clear, asking legitimate questions, requested by a professional body, is not ‘pill-shaming’. Expressing your unease at the response to mental health difficulties in the UK is not scaremongering. Asking people to be better informed about their mood and behaviour altering medication intake is not stigmatising.
Far from stigmatising others, the community of those harmed by psychiatric drugs often feel stigmatised and judged. Stigmatised by doctors who refuse to recognise a syndrome that was prescribed for them. Stigmatised by the Government and refused benefits because their difficulties don’t fit neatly into a diagnostic category. And now stigmatised and accused by proponents of psychiatric drugs. Ignored, invalidated, unheard, judged and diminished, all because we dared to question. I have no expectation that anything will change as a result of this initiative, but I did see it as a chance for those who lack a voice to be heard. Unfortunately, it seems that our unpalatable views are so toxic to some that society would be better served by us living in fear of expressing ourselves.
I am not a shamer, I do not stigmatise others who need and rely on psychiatric drugs and I am not scaremongering. Those who have accused me and my colleagues and friends of this need to ask if the same is true of themselves. Many of those speaking out are getting help and treatment which makes me glad, but many of those, like myself, struggling with post drug withdrawal syndromes are utterly without help and support and don’t even get the benefit of common courtesy or understanding from people with whom we probably share a great deal in common.
I do not believe that criticism of a psychiatric drug carries with it overt or implicit criticism of someone taking that drug or anyone who feels they need to rely on it. Are people who question cancer treatment ‘chemo-shamers’ and therefore by implication critical of anyone struck by this dreadful disease? Is that really what we are suggesting with psychiatric drugs? I am critical of the drugs themselves and the professionals that don’t tell the whole story and don’t offer us all the chance for fully informed consent, but I try to remain respectful in my interactions at all times. Given how much I have personally endured and lost, at times this is very difficult. However, accusations of pill shaming are personally directed at me and my friends and colleagues. The two are not equivalent.
I feel that we need to decouple legitimate critical views of medical treatment or therapy from the propensity to feel shame and guilt about that treatment. Medical science makes progress precisely by being self-critical and self-analytical, not by accepting blind faith and rejecting all criticism. Most new and novel treatments or therapies have arisen because of dissatisfaction with previous methods of treatment. If we stop questioning ourselves in health and well-being we will not progress and part of that questioning needs to be by people who experience difficulty, not just by those who benefit.
The accusations of pill shaming, scaremongering and stigmatisation move this important topic not one inch further forward. Proper courteous discussion and debate might just do so.
Ex-Collaboration
The link HERE offers a take on recent events within Cochrane by Tom Jefferson, where he lays out is view that Cochrane are completely uninterested in the integrity of the data they are keen to market under a Cochrane brand. Jefferson suggests there is a peculiarly British disease here. Its difficult to agree with this in the sense that in a few years the Brits will probably regard Halloween as a peculiarly British holiday when everyone knows its Irish.
(There may be a better version of this on You-Tube by the time this gets posted)
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As I said on Twitter…
If The ‘Pro-Brain-Pellet Brigade’ lived on Amity Island.
“It was a boating accident, stop scaremongering and shark-shaming. People won’t swim in the Amity ocean anymore. Swimming saves lives.”
‘Ghost’ Stories…
You will be the next one to be ‘expelled’ .. jokey jokey with Tom Jefferson and Peter Gotzsche..
It was a Seroxat accident, stop scaremongering and shark-shaming. People won’t swim in the GlaxoSmithKline ocean anymore. Seroxat saves lives.
Calamity ..
If people want to wise up, they have to have a balanced view about these meds.
Why don’t they come up with a label:
Over critical judgemental disorder
There are too many people passing judgements on those who have been impacted by these ‘so called’, safe meds.
We are being discriminated against, in the sense that we are being harshly mislabelled by some entities in the medical establishment and people who know nothing about our experiences.
We are incorrectly labelled with some type of ‘mental disorder’ (which is created by ambiguous/misconstrued/inconclusive interpretations ~ “Elementary, my dear Watson!”
Just because we are a minority, actually we are led to believe that we are a minority, when there are millions of us, who share the same, if not, identical health issues, as a collective team, universally. It does not make us MENTAL!
Please don’t judge us if you have not experienced what these ‘so called’ safe meds are capable of inducing. Please do your research.
We don’t judge people who ingest them!
We are just informing/educating/ reiterating our experiences and if some people don’t want to know, sadly we can’t change or re-programme your opinion/views or beliefs.
We have stories to tell and we don’t want to be bullied by those who don’t want to believe that these ‘so called’ safe meds harm.
There are always two sides to a story and these days, the media sadly highlights the positives, just like with negative clinical data trials.
Why is some vital information omitted with some meds?
Why is ghost writing still permitted?
If these meds assist your well-being, save lives or make you happy ~ we are happy for you!
However, don’t knock us down or build barriers for us if we have experiences that need to be told.
Our stories, may help others to add more useful tools to their wellbeing repertoire, instead of reaching for a ‘trusty pill’.
There are other remedies that can assist with depression.
By all means, people have the right to make better informed decisions/choices.
People do not have to be ‘boxed in’ to a ‘one size glove, fits all’, mentality.
Doctors, psychiatrists and any other medical entity, who prescribe these meds, do not go down with their patients, if something unforeseen happens to their patients.
As the saying goes:
‘What is good for the goose is not good for the gander?’
Dr Maryanne Demasi
@MaryanneDemasi
Stunned to learn this
Cochrane‘s Centre Directors now claim that emails are being intercepted & blocked ostensibly preventing debate over current issues within the organisation (& when an election for Board members is currently underway) (link: https://twitter.com/cochraneat/status/1066305698080964610?s=21) twitter.com/cochraneat/sta…
@cochranecollab
We are very lucky to have James.
It is all credit to James, that he is a real thinker who can really express himself well. He has developed so much within himself over time and he has done this by tackling the problem head on. James was once upon a time, like most of us, alone, fearful, losing so much self-esteem and self-worth when it wasn’t his fault.
The power of thought came to his rescue and James delivers in his own personal way. He manages to articulate a real sense of abandonment but never with self-pity or feeling sorry for himself. He shares his thoughts which are always carefully constructed and personally impactful. Polite, yet unyielding, James is his own man.
James is an excellent listener and determined. The way he is combative, without reducing his language skills or resorting to low language, is very much to his credit.
I have tremendous respect for him as he continues in his major aim in life, to get off the tablets..
Delivering this particular, message, at this particular time, when no-one appears to listen is an excellent decision. The rhetoric is up and adam from the leading lights in today’s psychiatry, something which is pretty miserable for all those trying so hard to communicate but batted down at every turn..
It is really great that sometimes the world throws up some real spanners, with hidden strengths they didn’t know they had until they were pushed so hard in the wrong direction that they rebrand themselves with an historic push…a push for the need to be heard..
“by the violence, and the innuendo and sheer aggression”
‘Things like brand, products, quasi-managerial, production-line speak which doesn’t really sit with the organisation.
Dominance by a small group of people and dominance of UK and UK-based people and what they are doing is controlling the release of information, nothing is allowed to interfere with that and its got to be status quo acting information, no rocking the boat, no calling into question, anything’ …
Yes, Tom …
Peter Tugwell is second nominator for two candidates for cochrane’s governing board elections – is this acceptable – what if everyone did that?
What happened to the report that came out on October 2nd from Roehampton and East London University, stating that up to 2 million people are suffering from severe withdrawal symptoms from Antidepressants?
Why haven’t we heard more about that recently?
Or has that been swept under the rug now, like all the other attempts to get the truth out about these drugs.
All I have heard on the news, in the papers and even at my local gym (there was a thing on the front page of this magazine called “Style”) going on about how many people have undiagnosed mental illness, and how more people need access to treatment. It was sponsored by Lyoyds bank. So now even the banks are getting involved.
It just seems everytime the truth tries to come out about these drugs, there is a strong backlash with the opposite message drowning out the truth i.e more people need to be getting treatment, which means more prescribing of the very drugs causing harm.
And now I hear there is a big campaign targeting young people and even children who’s brains aren’t even fully developed.
I am sorry but giving these drugs en masse to adults is bad enough, but giving them en masse to children who are in even more of a powerless situation and with little life experience to try and make what of an informed choice they can, is even worse. It’s a form of child abuse! Plain and simple.
These are real people’s lives we are talking about. Thousands and thousands of lives severely harmed and often completely ruined or destroyed. And the truth of what happens is just covered up.
I turned on the news yesterday morning and a spokesperson from the Royal college of psychiatry was rabbiting on about untreated mental illness on a news channel.
It’s almost everywhere I go now. It’s like a household product, the spin and lies from the pharmaceutical industry.
I am surprised they haven’t started adding SSRI’s to our food to top up our serotonin “just in case”.
They will be adding it to the water supply next at this rate.
Hi Spruce – so agree with your condemnation of targeting children -and much of the dubious research which is using pre verbal infants to carry out experiments on Obviously they have no control over what goes on – an even more vulnerable group- but some parents are wowed by it it seems. One infamous experiment pursuades mothers to turn away from their babies after playing happily with them for a while – then turning back to show a cold unexpressive face or in one case using a horrendouly frightning mask ,to see the babies reactions. including these days on a computer brain imaging screen. Surprising how the women went along with scaring their babies instead of walking out – the power of dehumanising status still rears it’s ugly head… –
As well as doctoring the water we drink along with poisoning the rivers already laden with effluent from drugs. we may be on route to having not only ‘diagnoses’ by computer but the right to section and incarcerate via a logarithm Not too far fetched in a world become more and more brutally controlling of citizens.
Many of us wish we had never set eyes on a ‘health professional’ at all – and it seems many of them would rather they never need to set eyes on a real human being. There is a massive drive to carry out e consultations supported by Matt Hancock health minister – – currently embroiled ina scandal for his sly promotion of privare company Babylon – During a radio broadcast he bigged up the GP at Hand app which was created by a private health care company, Babylon Health run by a conservative party associate Ali Parsa. In breach of ministerial code of conduct – as if that worries him…
To even things up a bit the Hurley Group led by Clare Gerada and partners has expanded it’s empire even more by winning most of the contracts for e consultations ,£45 million in funding from NHS England. The bids involved Clare G., ex RCGP Chair and Hurly Group partner .and share holder,and ex Hurly partner dr Madan . .dr Madan ex RCGP chair. has since resigned from e-consult and taken up a position with NHS England – so claiming he has no further involvement with e consult. Perhaps he popped into a neuro -lab and got himself brainwashed ,The Hurley group is such a massive beneficiary there is a conflict of interest there in most people’s book..By attempting to weed out most consultations which involve ‘unecessary’ meetings with real human beings to discuss issues, in favour of using check lists by a network of GPs working mainly from home, those who are embracing e consult are happy to take the cash which comes with them though -63p per person with e consult at Hurley Group or £9.99pp at Babylon. Their business plan varies.
Of course there is a place for other than face to face meetings which thousands of people prefer and find convenient but this is blatant commodification of public health services. While Clare and others including the college of gps blather on about the health of doctors being destroyed by their job and picking up even more cash to provide even more exclusive services for themselves – the Hurley Group also receives funds to run the Physician Health Service. – they seem only too willing to sacrifice what’s left of the NHS
Brilliant Spruce.
One good bit of news is Jonathan Gornall’s double page blockbuster piece in the Daily Mail on 27th Nov, on how certain drugs, especially RoAccutane isotretinoin, can take away one’s virility and cause suicides, especially in men. Annie has mentioned it and maybe could put a link here for us. You can access it too on Facebook on Olly’s Friendship Foundation. See post on 28th November with picture of brave Ed Henthorn aged 22, now incapacitated but who has spoken out and got his voice heard, and in so doing, showcased Dr Healy’s research collaborations and RxISK too.
But…..
I was rung by local BBC Radio the day it came out to do a live phone interview and I did one, no holds barred, at 5.10 pm on Radio BBC Hereford & Worcester, and had clips on all their News summaries too that day. (It’s still available on Iplayer). They rang again, well pleased it seemed, after the broadcast and said would I continue the story with another next morning at 7.45 for broadcast at 8.00 am. I was awake early at 6.30 am, all ready, bright eyed, bushy tailed and having had a cuppa so the brain was alert, when they rang me again at 7.30 am and said they were sorry but things on their schedule had changed and they couldn’t do the interview after all. Mmmm. Maybe I had ruffled pharmalogical feathers too much the night before. Maybe it was just other pressing news was in…maybe not. Maybe what Spruce refers to, was taking over. Who knows.
You knows..
annie says:
November 27, 2018 at 11:55 am
The acne drug that can steal young men’s virility: Tens of thousands are prescribed Roaccutane for their skin. But now there’s disturbing evidence of an embarrassing side-effect for men like Ed that can last for years — and leave them suicidal
Ed Henthorn has experienced devastating side-effects of acne drug Roaccutane
Active ingredient is isotretinoin which works by cutting amount of oil in the skin
But it can also cause anxiety and panic attacks, plus depression and even suicide
Evidence suggests it may also be responsible for permanent sexual dysfunction
By Jonathan Gornall For The Daily Mail
Published: 22:15, 26 November 2018 | Updated: 10:18, 27 November 2018
https://www.dailymail.co.uk/health/article-6431453/Thousands-prescribed-
Roaccutane-theres-disturbing-evidence-leave-men-suicidal.html
As David Healy, a professor of psychiatry at Bangor University, who is studying the impact of isotretinoin, explains: ‘Erectile dysfunction is psychologically devastating to young men and, without doubt, does lead to suicide.’
There is almost certainly a link between sexual dysfunction and suicide in men, says Professor Healy.
The review was ‘a whitewash’, says Heather Roberts, an author and illustrator from Bromyard in Herefordshire, whose 32-year-old son, Olly, killed himself in 2012 — he’d been prescribed the drug when he was 21 and lived with chronic anxiety for the next 11 years.
Heather and other parents feel their views about the risks were ignored.
Last month RxISK, an independent drug safety group based in Canada, called on the U.S. drug regulator to add a boxed warning to packets of isotretinoin to inform patients that ‘sexual side-effects can sometimes persist indefinitely after discontinuation of the drug; they can emerge on treatment and remain afterwards, or emerge or worsen when the drug is stopped’.
Good job nevertheless Heather! The BBC rolled over again but they can’t erase what was put out already.
Thanks Susanne. Live broadcasts are much the best when getting the message out. Once you get a head of steam up, they can’t stop the flow….wonderful.
The is a Comment on the Food and Drug Administration (FDA) Other: Citizen Petition from Data Based Medicine Americas Ltd.
Comment from Laurie Oakley
Doctors nor patients can make an informed decision about treatment with isotretinoin unless its known effects are made widely available. Reports from those who experience adverse effects are critical for the post-marketing surveillance process to work. This research team has taken such reports into account to make a strong case for changes to the product label. Please uphold your duty to make sure that doctors, patients, and the general public have access to this important information.
Require the Immediate Revision of all Isotretinion Product Labels (including branded and generic formulations)
https://www.regulations.gov/docket?D=FDA-2018-P-4088
Your Voice in Federal Decision-Making
You can always count on LO ..
Annie, there is a very interesting article on damage from RoAccutane isotretinoin by a fitness expert called Tom Shearer published in a Health magazine on Tuesday 4th December. One of our bereaved parents group found it but I don’t know how to transfer the link to here. I wonder if you could? What is so good, I think, about it is the research this guy has done to get fertility and nearly normal life back. It also endorses everything we and the other bereaved parents have said, all along, about the acne drug’s dire effects. In particular how only one out of a plethora of doctors, apologised and admitted what the drug had done to him, but even she would not dare to come out openly in public and say so. Tom Shearer has started his own online nutritional support information service and has apparently been working with many other RoAccutane isotretinoin sufferers. He might be a great point of contact for joining up with and spreading the word about the Isotretinoin petition. Annie, if you could possibly be able to find the link and display it here, we could all access him. Thanks!
A pleasure to help, Heather
Fitness fan, 38, ‘poisoned’ by acne drug Roaccutane which he says ruined his health, sex drive, and left him a ‘physical wreck’
Tom Shearer believes his health was destroyed by prescription drug Roaccutane, given to thousands of people each year
https://inews.co.uk/news/health/roaccutane-acne-drug-poisoned-fitness-fan/
Shearer prescribed controversial drug that can cause infertility
Drug damaged his liver, thyroid and gut
Almost ten years on, his side effects still haven’t disappeared
He warns the drug should be banned as too dangerous
Can you please provide us with the science proving that any “mental illness” exists James?
I am happy to provide you with a host of evidence showing that it is not, including but not limited from Paula Caplan, Lucy Johnston, James Davis, leading members of the APA, telling information from the DSM itself, and the National Institute of Mental Health NIMH that withdrew all funding for the DSM5 owing to its lack of scientific credibility.
As such, I am confused about what evidence you are relying on that justifies the use of neurotoxic chemicals for imaginary diseases not to mention the long list of serious human rights breaches noted by the UN and those fighting against the systemic oppression of the rampant misdiagnosis of “mental illness” which it erroneously attempted to compare to being a disease just like diabetes, which has repeatedly been exposed as completely nonsensical and now you are likening to a disease, like cancer.
In what credible legal, medical framework is it permissible, ethical and not severely problematic to continue to support a pseudo-medical theory that has been publicly discredited, admitted to be a failed theory by leading psychiatrists, countless credible researchers and doctors as if it was factually proven, true and legitimate?
Thank you