Editorial Note: Following the Montelukast, Fluoroquinolone and Psychotropic post, there is a comment from Heather Roberts to which David Healy responded. The edited comments are here. This led to an email exchange between HR and DH which follows. Along with Wendy Dolin and her MISSD website (see above) and Billiam James’ Akathisia Anthem, Heather and her husband David have done more than almost anyone else to raise the profile of Akathisia. Their work will culminate in Ollys Friendship Foundation. This is a marvellous achievement but is it the right way forward or what needs to be done to help it achieve Heather’s goals. This post connects with the Something Happened posts on DH org.
That’s what happened to my son too. He died, mainly because his akathisia was so terrible and unbearable.. he felt he had gone incurably mad. He was however highly intelligent and realised that the social workers and psychiatrist he spoke to when tentatively expressing his suicidal thoughts, as we are all, laughably, implored to do, didn’t have an inkling of an idea how to help him, rather instead resorting to ridicule and belittle him, so he decided death was the only option. He wanted to remove himself from a hopeless situation and in so doing give us, his ever loving parents, our lives back, free from battling to get help for him. ….
His dad and I, almost by default, have become core members of a Suicide Prevention Group and have the opportunity to speak at a Suicide Safer County Council, CCG, clinicians and many others’ convention this coming week. I’m planning our speech. It will cover the following: what happened to our son, what could have prevented his death, what change we want to see NOW to facilitate such change. There are 4 families in this, we are the only RoAccutaners. We are however all agreed that when as carers we tried to help,our young, we were out in the cold. There was no compassion for them or us. ‘If you want to kill yourself, there’s nothing we can do to stop you, you are free to do it’
How to cope when a loved one suffers anxiety expressed as a desire to die? My suggestion is: a three tier system in place.
1. Immediate compassionate response such as offered by the charity (independent of the NHS but with enlightened listening psychiatrists on its books if needed) SUICIDE CRISIS of Cheltenham, aiming to open other branches in other regions, results have been so good.
3. At this more informal centre, mostly staffed by trained volunteers who genuinely love people and care about them (this qualification VITAL) where creativity and supportive companionship offered till patient feeling stronger again, but with option to come back on visits if suffering any occasional blips as their confidence grows and mental unwellness recedes. It goes without saying that akathisia be checked for, from the start, and medication use avoided where sensible and possible, tapering advice given and monitored.
I have a problem with this. Unless, someone diagnoses what’s happening as a toxic effect of a drug and this shapes what happens next, then all the Care is the world is not Care and is further going to imprison the person in trouble. Again and again I hear of situations where Carers in settings like you describe get sacked if they dare say I think this guys problems are being caused by his drugs
Main thing possibly is to get the policy makers to listen without pre-conditioned closed minds, so, come in at different angle that they are not expecting. Awful to say it, but true, that people like us, bereaved by suicide, are granted opportunities to talk in such forums because we are in a club no one ever wants to find themselves in, losing one’s child to suicide is the worst thing a lot of them can imagine.
We explain, no, there IS something worse. It’s seeing your young struggling in agony with AKATHISIA, sparked off by prescribed meds, hearing them begging you to kill them to end their pain, and having nowhere to turn for honesty about what’s going on; it shocks them to hear me say I was glad he’d died because one wouldn’t let an animal suffer anything like as badly as the people do with unrecognised AKATHISIA. I couldn’t finish him off myself but that’s not to say I didn’t think about it when he was near the end, when he had no peace even to sit down or dare to sleep without fear of horrific nightmares. When you love someone unconditionally, you want them not to suffer. Death is an end to suffering, if there is no other way out. What we have to get people to take on board is that, like you say, all medicines are POISONS and not to be dished out as such panacea for mental or physical discomfort. They can cause something even worse than death, and we have to wake up to this.
We see on BBC ‘Breakfast’ this morning that they are featuring children in primary schools self harming and suicidal, and teachers apparently wanting mental health professionals rolled in to address this. More Gov funding being discussed, which will doubtless mean, more very young kids on medication. Result will be things getting even worse. Copycat self harming. Pharma will be queuing up to offer Gov bulk bargain deals on kiddies’ antidepressants to save NHS money on care, like they did with statins.
Olly wanted to make a difference. His giving up of life could do this. We can talk and do about him and his death and what caused it. It shocks people, but they listen.
We are completing his Arts & Crafts Centre, with money he left, in accordance with his wish, to work with kids and teachers like I’ve done in schools since 1984. Help to build resilience, generate happiness through creativity, distraction. Get some reality and hope and good sense across. No need for drugs for everything. If we support carers there too in other sessions, they can help those they care for without drugs. We need to show that this works. We’ve already demonstrated this works for almost 2 years working as volunteers at the Horticultural Therapy Centre by setting up , funding and running the Art Group. People there who were on antidepressants have decided to come off, and are better for it. But to be fair, they hadn’t been started on them long, they changed their minds in time. Others will never start. Because they read RxISK with their families and they then understood better what could happen.
These are just our ideas in answer to your words about what to do to really make a difference. . It’s slow, but it’s working. We will never give up. Our memories of Olly’s suffering are so strong. We are doing what we should have done for him, and would have been empowered to do, had we discovered RxISK in time.
Thanks for this note. However I don’t see this making a difference for the better. The point you make about primary school children shows that whatever it is is getting worse – and I hate to say this I have to ask you, just as I ask myself, are we, am I, helping make it worse. The very act of talking about a child who has committed suicide raises the emotional temperature that leads to politicians and everyone else reaching for a Fix. And the media roll in and will transform you and opposition to drugs into an Anti-Vaxxer as it were.
I do not see the BBC, or the newspapers, or any politicians or bureaucrats in the Dept of Health, editors of our major medical journals or presidents of Colleges or Associations, or anywhere else able to understand or willing to do what needs to be done. It needs someone who people will listen to tell the wider public – look guys we have a rotten barrel problem – everything we have depended on is ghostwritten junk with no access to the data.
They would also say there is no point blaming this on Pharma – what about the craven doctors who refuse to tell people they operate on the basis of ghostwritten articles and refuse to demand access to the data when they are in a position where they could extract it from pharma by refusing to prescribe drugs for which they don’t have access. What about that craven body NICE who know exactly what they have been doing? What about those once brave BBC, NBC, CBC, and newspaper journalists from the New York Times to the Telegraph who were great with rotten apple problems but now, just as the Pope did with the Holocaust, don’t speak up about a rotten barrel problem for fear it would be worse for them.
Until then all efforts to produce a more Caring situation will inevitably default into people who are distressed being put on more of the very meds you are raising concerns about. Care involves difficult calls – telling people about akathisia is not a difficult call. Telling people everything in most major medical journals is ghostwritten is, and telling them that regulators from FDA to EMA to MHRA don’t get to see the data is difficult because after you say it “they” don’t look at you with sympathy, they think you’re nuts.
You see a few people saying they wouldn’t take pills and think you are winning – you will keep thinking that when we get to 50% of the population taking them. Everybody who is concerned and trying to do something deludes themselves into thinking things are getting better because they hear some echoes in an ever smaller chamber. They’re not getting better.
Heather’s presentation is HERE.
Agree most of this stuff is societal, we don’t need these kids being referred to psychiatrists, counsellors, to CAMHS and all this stuff, we just need fun clubs and pursuits for kids to get together and do. Youth Clubs have gone, there’s little time for art, writing, creativity in schools, and yes, as you say, endlessly batting on about self harming and suicide makes more and more do it. Olly never self harmed except once before he died, and only because another patient told him it helped to ease the pain. And it did. In a way. Apparently. But it’s becoming a way to get attention. And all these celebs writing books linked to their own ‘mental illness’, Monty Don, Susan Calman, Bryony Gordon, it sells books like there’s no tomorrow. But mostly they promote medication. Bryony loves her antidepressants and she chats away cheerily about it with Prince Harry etc. Calman’s books are quite good, Monty Don, well, all smoke and mirrors. ‘mental illness’ is this decades passport buzzword.
Every footballer, every singer/songwriter, on and on. If you are not connected with it in some way, you are not interesting…almost every tv programme, documentary features it. But no one, not even Sarah Vine in her efforts with BBC (good luck with that…) comes out about AKATHISIA. Had Katinka not done her book, I’d never have known about it.
As to the rest. We need to focus attention on as normal life as possible and making the best of it. I remember Dr Antony Daniels writing a good piece in the Mail about accepting that no one’s life is perfect, live with it how it is and try find pleasure day to day in small stuff. Be a pessimistic type, because life is tough. If you watch a film like ‘I, Daniel Blake’ you can see how hopeless and helpless people feel, and no drug is going to help this except inducing oblivion.
All I’m saying is, we have to push training on AKATHISIA, so I’m sending your our document, you don’t have to read it. As I began, I asked the room who had heard of AKATHISIA. Only one, the CCG chairman and retired GP had, but he looked away sideways and down and ?dismissive/embarrassed as he nodded. By the end of our 20 Minutes, all those other delegates knew EXACTLY the horror of what it meant and had www.MISSD.co in our document to refer to for training to take away with them when they left. Ok, that’s just Worcestershire, but it’s something.
We HAVE TO DO SOMETHING David. We can’t just sit on our hands. What you are saying is all correct, I know, but at the same time, we can’t sit and do nothing.
Being totally honest with you, and I hope this doesn’t upset you, sometimes I feel that whatever we suggest, try to do, is never worth doing in your eyes because the situation is so hopeless. One could see this post then, if you wanted to, between us as a frustrating batting back and forth of aspiration to make a difference, but us never getting it anywhere near right. Don’t take this as criticism, I know you’ve been embroiled in this for decades and from your deep research you know exactly, frustratingly, what should work and what won’t, and we blithely, good heartedly, desperately, keep running on irritatingly through our cloud cuckoo land.
I’m trying to say, we are with you all the way and although WE may feel we are winning small battles, yes, we know that from your vantage point, the war is pretty well lost. But we have to keep fighting, to be true to our principles and above all, to Olly, who had so much sheer guts but was just as pessimistic as you!
Fascinating exchange. I totally get the debate here. The more we raise the issues, the more we are giving a voice to the KOLS. It’s the KOLs who carry the weight in the media, usually via the SMC. It’s one big incestuous club.
Combine this with the various ‘new’ studies that seem to be being released on a weekly basis and we have a social media game of ping-pong. On both sides of the table, we have the ‘told you so’ teams both with different arguments. One team can say this ‘finally puts to be the controversy’, while the other team can find holes (quite easily).
We then have a study within a study… then another study within a study, that cancels out the claims of one another. This leads to claims of ‘but you failed to mention this or that in your study’. So, the team being caught out go back and rectify their errors, at the same time chastising the opposition for also having holes in their claims.
It’s usually the KOLs who come out on top, in the mainstream media anyhow. They either have the final say or their claims are taken at face value by lazy journalism. The SMC has quite a magic wand because they know adding ‘MD’ or ‘Professor’ to a name will give them the clout they need to keep the conveyor belt rolling along, especially if those MD’s or Professors are linked to the APA or RCPsych.
A decent journo could easily stop this charade just by asking one simple question to the spokesperson. ‘Do you have access to the raw data?’ – The spokesperson will either deflect or become a bumbling wreck – or, simply say “No.”
The journo could end the piece with something along the lines of, ‘Drug companies need to release this data, moreover, prescribers should be banging down the doors of drug companies for this data.’
Sadly, they don’t.
So, what do we do?
I’ve been ‘in the game’ for over 13 years and I’m buggered if I know.
Thank you David for giving my husband and me the chance to air some of the desperation we feel, having lost our son, to prevent deaths like his happening to others. I maybe should add that the building he had started to convert, just before he died, into an Art & Creativity Centre to welcome anyone wanting to distract themselves from anxiety, loneliness etc, learning and enjoying things like painting, writing, and lots of other crafts, was not going to be an OFFICIAL Suicide Prevention facility, but by supporting people who want to get together in a rural relaxing location, where above all, there is listening and kindness, he felt that their anxiety could recede, as his often did when he got busy on a project.
To learn more about Olly’s building’s progress follow the first link to the OFF Facebook page below his story on http://www.ollysfriendshipfoundation.org.uk. We hear that changes are currently taking place re the rolling out of Social Prescribing for GPs and we hope Olly’s Centre might play a part in this. But, as in Dr David Healy’s post, we KNOW that we are struggling to get those same prescribers to substitute this kind of early intervention for the offering of medication. But at least we can show by example that it CAN work. We have tested this model for almost 2 years elsewhere.
For fans of Monty Don, I did not mean to be disparaging his books, but TV projects like his series ‘Growing out of Trouble’ appear, from his book on the series to be ongoing but in fact when one tries to help, seem to have disappeared, so I do wonder whether they are sustainable or just made good TV viewing figures at the time. In fairness, he did kindly wish us well with our own project and thought it was marvellous.
Lots of iniatives start and then fizzle, through lack of funding. Olly’s plan was not necessarily to tag his Centre as a ‘mental illness’ support system but simply as a place of learning, in kind supportive company, which would change the whole emphasis from labelling ‘mental illness’ as something to be ‘treated’ but instead be there for all, to encourage people to find resilience and happiness by developing maybe new skills and making new friends in an environment that lifted the heart. We are pressing on with the building work on this and after our deaths, his charity will enable it to be ongoing. But all this pales into insignificance if AKATHISIA is still not recognised in time, as tragically it wasn’t for Olly. He’d have run this Centre if he’d lived. It was his great desire to pass on knowledge and help others.
Thank you for this sincere and important debate.
Without RxISK and D.H. – many of us would have never fully understood what had devastated and destroyed the inspirational and enchanting children we had loved unconditionally and raised.
Cherished, loved and nurtured only to witness their priceless lives and unique gifts terminated, or all life’s dreams and gifts denied by AKATHISIA ignorance.
Doctors are pretty good at recognising those few ADRs (Adverse Drug Reactions) about which we have been taught as medical students and trained as post-graduates.
Examples to “google” include Occulo-gyric crisis (anti-emetics). Procaine reaction from certain I-M penicillin preparations. The Jarisch-Herxheimer reaction.
We were NOT taught that ADRs can result in lethal changes in emotions, feelings and behaviours.
Consequently, many doctors may find the reality of prescription drug induced taking-of-life-by-self difficult to conceptualise, understand and accept.
We were not taught, nor did we have the correct mindset, to realise and protest:
“THIS IS NOT SUICIDE”.
The prescriber ignorance of AKATHISIA has been maintained by manipulated, ghost written clinical trials.
Perpetuated by the misuse of terms such as “Hyperkinesis” and “Emotional Lability” for marketing advantage.
What else can devoted, loving parents do in our grief and endless bereavement for our avoidably-dead or avoidably-maimed, now almost living-dead from AKATHISIA?
We must, – indeed we are driven to, – work with those few Physicians who have the courage and integrity to be “Truth-Speakers” to a deaf profession and to try to spare other families from AKATHISIA and its grotesque sequelae.
It will soon be “Fresher’s Week” at all U.K. Medical Schools.
I was there fifty one years ago.
How I wish that we had sufficient numbers of AKATHISIA expert family members to staff a stand at every one of our Med-Schools warning students about
AKATHISIA IGNORANCE and AKATHISIA DENIAL.
These young doctors-to-be may then be empowered to save the lives of their future patients from future prescribing errors and ADR misunderstandings.
Further more, such vital awareness may save some of the lives of these new medical students themselves, as they, or their flat-mates and loved ones might then promptly recognise akathisia: – if and when they are prescribed SSRIs-SNRIs for their ever increasing student and professional stresses, (or indeed any akathisia inducing drugs).
We must repeat the AIDS appeal: “Don’t Die of Ignorance”.
DON’T DIE OF AKATHISIA IGNORANCE.
‘Without RxISK and D.H. – many of us would have never fully understood…
Inside Health: Online Health Tips
They discuss the BNF, British National Formulary, Drugs.Com and MHRA Yellow Card Scheme to find information on contraindications/side effects/drug interactions/safety alerts, and so on.
I remember distinctly my new doctor referring to a large paperback when she first gave me Chlordiazepoxide/Librium for ‘agitation’ when I had first stopped Seroxat for three weeks and had restarted it. This was before, she advised, one every other day for two weeks and then stop with the absurdities and chaos that then ensued and nobody realising that life threatening Akathisia had set in.
Anecdotal—interactions based on either a single case report or a limited number of case reports.
Back to RxISK …
This was an excellent post. I have also found it difficult to discuss the legitimate dangers of these meds without putting people in a state of disbelief. People find it so hard to believe that something prescribed so casually could be causing this much damage. As the post states, people will try to lump you in with the WooWoos who have that stereotypical “anti-vax” attitude and doctors will just gaslight you. My personal strategy for dealing with this involves printing out as much peer reviewed data as possible. I try to keep studies on hand showing how many of these drugs prove no better than placebo as well as other studies showing the myriad of side effects they can cause. I try to memorize as much of it as I can and carry around as much data as possible almost everywhere I go. I realized something of this measure would be necessary after arguing with doctors and other people about my PSSD. We have to always remember that the science is there and it is growing. The evidence is actually on our side, not theirs. The reactions I get from Doctors and other people is completely different now that I have memorized the mechanisms of action and also carry the data with me to whip out right in front of them. I’ve had doctors dismiss me before due to my stories being “anecdotal”. I have now begun to use this tactic against them as I carry the research with me. Now when Doctors say they have never heard of things like PSSD therefore it mustn’t be true, I whip out the research and say something like “So you’re saying that your own anecdotal claims are more valuable than the broad scope of peer reviewed research?” The look on their face is quite priceless when you beat them at their own game. I think this is the route we need to go. We have to educate people on how to differentiate between rotten research and clinical trials with an appropriate study design. This is especially important for the newer generations. If we can empower ourselves with the knowledge and learn to debate these topics logically, we will start winning battles that we would otherwise lose. I believe that is the key to winning this.
Kristina K. Gehrki @AkathisiaRx Jul 20
Kristina K. Gehrki Retweeted Butterflies for Joe
More than 6K views of Janet’s nonprofit, Butterflies For Joe! Joe’s life ended shortly after #akathisia began. See: https://www.butterfliesforjoe.org/ I’m proud of my friend, Janet, for making a positive difference in #PublicHealth
Dr. Peter C. Gotzsche, MD
Dr. David Healy
Stories Around the World
News and Media
If good works like this didn’t make a difference, we could kiss it all goodbye, yet, look at all the progress made ie.Welsh Senate, Welsh and Scottish Petitions, none of which is to be sneezed at – from Prestatyn to Birmingham and beyond – pure gold …
Annie thank you, this ‘Butterflies for Joe’ site is wonderful. Wouldn’t it be great if someone good at sleuthing all these various stories and charities, as you are saying, ‘all these good works making a difference’ could collate them all and we could try to get a book put together to give the wider world just a taste of what SO MANY bereaved and dare I say, indignantly furious relatives are doing in honour of their loved ones and most importantly, to get people to wake up and listen before it’s too late. These organisations are spring8ng up all over the world and cross referencing, and can be linking together in strength.
Jane is right about butterflies and significance to many. We’ve had similar butterfly experiences.
Heather, and Tim
for Advocacy and Research
Akathisia Alliance for Advocacy and Research @akathisiaalli Jul 6
Several people with #akathisia in our new video were #suicidal and entirely alone because they could not get a diagnosis. Please share it to spread the word and maybe this will stop happening. Thank you!
This film charts neurological damage as well as the emotional terror that is Akathisia.
It features patient stories and a testimony from Dr. Joseph Glenmullen
It doesn’t pull any punches, as Akathisia doesn’t, and I am dumbfounded that doctors messing about with and introducing psychotropic drugs to the patient don’t link up the obvious signs when the behaviour becomes totally irrational and when they themselves have brought it on …
I think its been impossible to make any progress in this or any other area, because its human nature to focus on that, which immediately affects us and which is a problem we understand well — whilst ignoring other problems because we understand so little about them and we just don’t have the time to do everything.
I agree in part with DH in so much as one has to look at the bigger picture. It is politicians and regulators that appear to go by the adage that “for every complex problem there is always a simple solution” — but as we are only too aware, it is those solutions which are usually wrong.
These quick fixes over the generations, has left present day society in a Gordian Knot. Whatever our battles are for righting wrongs and making the world a better place, we have slowly become divided, as a homogeneous society. Take several steps back and see that even though there is much to be thankful for in our modern world, there are more groups than ever (not just in health & welfare) facing problems that should not have been allowed to come about and they are “all interconnected.” We can no longer untangle them one-at-a-time.
We know what connects them too. Its being said, even on this website: Lobbying, revolving doors, censorship to favour corporate companies, the unseen influence that large corporations have over the media to sway public perception (eg., Don’t say that, or the press will labelled you like a Antivaxxer) and corruption.
For those who studied the classics such as Thrice Great Hermes (Greek god of trade) educating Asclepius (God of medicine) will remember how he foretold the fall of Ancient Egypt, due to it adopting ideas that were foreign to the principles that made Egypt great. This divergence from satisfying natural human needs has also been behind the fall of every civilization since. We, despite all our “feelings” that our modern civilisation would never be so stupid as to go down that root again, do so out of (for want of a better phrase) Cognitive Dissonance blocking our view. We are falling into a society ruled by the bare bones of capitalism with the flesh rotting off.
So what is the best thing that “we” all can do — as both individuals and groups?
For a start, we can keep reminding ourselves of the bigger picture and reach out to all other groups fighting other battles and agree on common ground — so as to start speaking with one louder voice.
Tyranny of the masses is never a good thing as it can get out of hand. Yet this is what injustice, the erosion of choice and freedom leads to, if the checks and balances (that our forefathers put in place) fail completely. We must all act to avoid such a collapse.
A documentary aired in about 2014 has just been uploaded to Youtube entitled:
The freedom of choice: The ultimate lie?
It examines the current state of life and personal choice today. Experts from many different fields offer a frank and startling look at the hidden limitations in our daily lives. Focusing on key areas such as food, medicine, finance, and media, Freedom of Choice provides viewers with a glimpse at the myriad of ways their lives are being dictated, and tells us who stands to gain. Where lobby groups and big business wield more influence than ever before,
Use this as an intro for informing others of the bigger picture and accept that sometimes we have to delay our own gratification for a bigger payback in the future. We must unite!
For those that wish to read the Hermes text in full, its here (go to Part IX).
I agree that we have to keep trying but I don’t know what the path forward is. It just seems that I am beating my head against a wall.
One issue that I don’t think we have fully fleshed out on this site is the ongoing, life long threat that people who are stuck on medications face to make sure they have access to their exact chemical, dosage, and quality after unsuccessful taper attempts (or wind up on more medications than what they started with). I recently had a situation where my psychiatrist called in the wrong dose of one of the meds I am stuck on and had NO understanding of the implications of changing that dose—that I could die from akathisia and/or get more nerve damage. Etc It’s a horrifying constant threat. I have of course tried to educate her; clearly this has been pointless. Her lack of awareness despite my education attempts disturbs me in the deepest way possible because what is at stake for me.
Then there is the issue of what to do when the chemical you are physically dependent on is on back order with the manufacturer. This also happened.
There is the threat of lack of access to the chemicals in the event of a natural disaster. Or by false imprisonment—say if you are falsely accused of a crime. These are literally my greatest fears. The trauma continues.
Katie B-T makes an interesting and concerning point about possible limited access to medicines during withdrawal. I’ve wondered what will happen to people like this if the U.K. Brexit causes an interruption in supply. Will this begin to show more people what AKATHISIA withdrawal is, because they are pitched into it if they can’t get their meds or have to change them.
Slay Barron’s method of carrying data is excellent. We do that too. We’ve produced a leaflet containing as much info and reference sources as possible on RoAccutane isotretinoin and we must have handed out, to appropriate listeners, over a thousand already and they can be downloaded and printed from our http://www.ollysfriendshipfoundation.org.uk site under the ‘RoAccutane’ link. I remember one GP, writing a referral letter to a dermatologist when Olly was about 15 and his acne becoming a problem to him, saying very derogatively, ‘ the mother carries round a huge file of her research on this (implied sigh of OMG) as to why the family are against the use of RoAccutane’, (or words to that effect). However she also admitted that Olly had been using The Stone Age diet and it had made a marked difference. (It wasn’t a HUGE file but a few papers in an A4 file marked up with tabs so we could quickly access them to save GP’s time, you had to deliver your words to fit in your allocated 7 minutes, using to huffing/dismissive doctor). However the huffy dermatologist just told him if he didn’t use RoAccutane he’d never get rid of the future scarring. This scared him but he resisted taking it till he was 21, he tried everything he could research till then, diet worked, less stress worked, drinking water and less milk helped. But the stress of going to Uni definitely worsened it again. The threat of being stuck with scarring was untrue, he removed any by using Blue Light and laser treatment eventually. But the RoAccutane when he finally reluctantly used it was not all that amazing on his skin at all, except it ruined his quality of life in mind and body. But we got branded by GPs from then till he died as nerds who had the temerity to ask questions and do research. Like DH says, you can get branded as nuts, anti-Vaxxers etc. But Slay Barron is right, you’ve got to do it, you play them at their own game and boy, are their tails a-twitching. However, does it alter their mindset, and understand Katie B-T’s concerns? I hope so but I doubt it.
Tim’s idea of a bereaved parent/patient-staffed AKATHISIA EDUCATION AWARENESS Stand at Freshers’ Day at Medical School is wonderful. I wish one could get Unis to allow this. I’d try ours but I know that Pharma funds their psychology projects and Unis are struggling financially right now. Money talks. Other RoAccutaners have tried to enlighten students at their own dead youngsters’ Unis and have been refused the chance to give this info; they are all funded by Pharma.
Thanks Annie for the Butterfly Project links which we will follow, and thanks Pogo for ‘The Freedom of Choice…the Ultimate Lie?’ film which we will watch. And Bob yes, you are bang on the money re study after study, I guess we need to find that decent journo and ask ‘do you have the raw data’. Thanks to all for these most interesting thoughtful responses to DH’s debate here; Olly’s dad and I are on a learning mission with this and have been so, via RxISK for several years. We will try to follow up all ideas, really grateful for them.
Like Katie B-T says, ‘the trauma continues’. The tide is on the turn, we feel, but in the end, publicity is the answer. Get the message, the true message, POWER, out to the people. Celebs could help so much with this if they embraced the truth about AKATHISIA and felt moved to soapbox about it. It will take very brave ones to do it, risking their careers, but ‘those who lose it all may in the end, gain it all.’ We need to show the world that for each of us to ‘have the edge’ we’ve GOT to look out for ourselves, get the data, don’t literally swallow down what doctors hand you, without question and live, or die, to regret it. We are blessed with brains, we can think, just as they do. Doctors are only people like us, not magic wand-wielders. A stethoscope round the neck doesn’t turn one into a superhuman being. Effective publicity could surely work. In the right pair of hands.
– At first I was shocked to read so many accounts on the blog which highlight prescribers’ ignorance of Akathisia. Because in the mid 80’s with absolute certainly I know the psychiatric department at UCH (London) was aware of Akathisia and actually used another drug on top of the one which caused it , if symptoms appeared after prescribing it by injection. This injection avoided stating the name of the drug – it was just given without any information except ‘it will make you feel better’.
The scandal there included that they gave no warning whatsoever, just waited to see what happened. What happened was some experienced the terrible restlessness – which was never given any explanation. ‘the response being ‘we can give you something for that’. Were people being experimented on without their knowledge I wonder? People on wards inanother city used to pace around all day but this was passed off as boredom, anxiety or the effect of being locked up – it could well have been Akathisia. TheEthics cttees in London at the time were an institution serving scandal as were the ‘patients councils/advocacy services developed independantly at first but then ‘managed’ by hospital managers who took over with tokenistic inclusion of ‘users’ when it was realised they were gaining some power and educationg others about drugs, especially that they could cause impotence,their rights and so on..
This was during the times when computers weren’t used by everyone so for many there was no access to information online, It was also a class issue, those who received more respect were from the same background as the prescribers and often received therapy instead or as well. Support groups were set up by those who got to know each other by word of mouth and local posters, by concerned parents etc , some ‘sold out’ for funding . A lot of time has passed since then, people thankfully are be better informed if they make their way to forums such as David’s . but people are being infected by more and more drugs by prescribers who still don’t know enough about them (as well as ‘novel procedures’) assisted by their hand’maidens’ who kow tow to corrupt authorities. I find people are not shocked about the corruption, they are shrewd enough to see what goes on and have another era to compare it with ,older people especially and those who live in ‘deprived areas’ are angry and sad that they (we) have been turned into cash cows and many do blame doctors for taking their gold once again (as in 1945 when Bevan stated they had to ‘stuff their mouths with gold’ to create the NHS) – as one put it ‘there are too many sucking on the teats of the NHS’ The disgust felt by many is/has replaced respect or trust – the constant projects being set up are just fluff which actually increase cynicism in society.
Heather, reading here is heart breaking as well as frustrating. I have now decided that it’s time for us ( our Prestatyn group website) to change tack. A couple of weeks ago, in response to the Montelukast post, I decided to put up a post on prescribed meds in general – that dream has not yet been fulfilled. Having read the e-mail debate here, I now feel that we should certainly cover Roaccutane too. However, I think that we may need to move away from starting with the name of the offending medication – concentrate on youngsters and their skin, the different types of acne, the medications likely to be offered and by whom and then, finally, hit home with RoAccutane. To do justice to this very serious story, I would like a few more facts from you – I know you quoted the number of suicides connected to this medication and accepted by Roche, but can I find it now I need it, no! so please could you quote it again and, maybe, with a date for the number that you quote. Also, are any of this number caused by RoAccutane alone or are additional meds, as in Olly’s case, true for each of the individuals?
We have tried and tried to get the withdrawal from ADs to click within our community – no-one owns up to being in withdrawal and those who support them find that their clients are unwilling to attend meetings to discuss their successes or problems. We still offer this support – but the uptake still stands at zero. When we’ve had our Open Meetings there has been great interest in the Roaccutane leaflets with a number of people being aware of its name but unaware of its connection to such severe problems. Maybe we can further spread THAT message whilst we await more interest in AD withdrawal!
Most of us who comment here are either suffering the consequences of trusting their medications, living with those who have suffered ( and continue to be affected) or are the parents or relatives of those lost to prescribed medications. In that respect, WE ARE ALL IN THIS TOGETHER. The truth is that, in whatever way we work, for whatever end game, we are also doing everything we can TO SUPPORT OURSELVES THROUGH OUR TOUGH TIMES. Having a battle to fight keeps us going; reaching for the dream result gives us a purpose and striving against all odds gives us hope – the hope that our suffering has not been in vain. We fight on, not for our individual selves, but in the name of ALL SUFFERERS and our final wish is that NO MORE families need to suffer as we have.
If we were to just give up, because, maybe, we are not making much of a difference, then, in my opinion, each of us would be sufferers too – we far prefer to be warriors! This ‘need to battle on’ was brought home to me recently. At the end of April one of our sons was involved, as a pedestrian, in a road traffic accident. Mid-June, he died from his injuries. Accidents happen – we can only ‘accuse’ if rules have been broken. I am stuck under the ‘accidents happen’ umbrella – I have no one to fight against, neither an individual nor a company to challenge – and the effect is FAR worse because my frustrations are having to be kept under control without an outlet. So, let’s ALL remember, if we ever feel that what we are doing is not getting us anywhere, we do this FOR OUR OWN NEEDS as well as for the needs of others.
Sending you my deepest condolences.
You phrased this very well and it takes a very wise person to put this in the context that you have.
When my own brother was killed in a road traffic accident, in Riyadh, Saudi Arabia in 1970 when he was in the back seat of a car, which went in to the back of a lorry in an unlit street and he was shot from the back seat through the windscreen, my father sat slumped and said ‘what a waste’.
It was made worse for the surgeon, who it turned out was his friend, and we received a very well put letter from him. He had tried desperately to save his life. His words helped us all adjust to life without him.
Your words resonated with me because there was nothing we could do except live with this reality and we never heard from his other friend who was driving the car.
Listening to my father’s words now, we can certainly apply this to the deaths from these drugs.
The ‘waste’ of good lives is something we all want to address because we feel the immense pain of the loss for countless people and I think as you said, that understanding death may be can give us some small advantage when we have to understand not only our own mortality but mortality as others see it.
I think this is where sometimes the doctors, despite them losing their patients from time to time, need to develop a seriously improved rapport when dealing with unnecessary suffering from all these drugs. To be on the receiving end of seriously harsh words from bands of doctors can be personally devastating and irremediably unhelpful. Thank you.
Mary , For now I just want to say how sorry I am to read of your loss. Love from susanne
I’m not sure whether details about deaths from RoAccutane isotretinoin can be written here as maybe it’s a bit off topic from AKATHISIA but I will lay out a few facts and signpost you to sources of more. When our RoAccutane group of protesting ‘bereaved by suicide families’ met with Government and the MHRA in 2014, the latter’s representative neither denied nor admitted the accuracy of our figures that at least one young person a month, on average, was dying by suicide after taking RoAccutane but they agreed that 5 or 6 a year died which they didn’t think was too bad, as they reckoned that was 1 in 10,000 who had used it. We know it was easily double our own figure of 11-12 p.a. this year as already apparently 20 have died since January. You can check this by looking up under MHRA’s yellow card system figures, which is in the public domain. We know that in the last 4 years, prescriptions have risen by 680%. The drug is now being given out to anyone with acne, whereas it should only be given as a last resort treatment to those with severe cystic acne, which Olly had. These suicide death figures are hard to prove, we reckon deaths are far higher still, but many are unreported because Coroners never ask on a Suicide death ‘was this person taking RoAccutane isotretinoin.
The situation is complicated further by whether or not antidepressants have additionally been used afterwards. So many people get low mood on taking it, because it affects hormones I think, and are offered SSRIs to combat the low mood. This can trigger a mini psychosis. Then the person gets referred to a psychiatrist who may not make the connection between a presumed mental illness-type behaviour, and a skin treatment. In Olly’s case, the psychiatrist didn’t want to know. Or they will deny that RoAccutane can do this. The patient will then get put onto higher doses of antidepressants and/or antipsychotics. This is the start of the slippery slope. They are then tipped into what we term The Perfect Circle, and you can find two posts on this on RxISK for January 2017 called ‘RoAccutane and The Perfect Circle’ and ‘Roche and The Perfect Circle’.which give a lot of the facts you wanted. On http://www.ollysfriendshipfoundation.org.uk under ‘RoAccutane’ you will find a lot of facts too, including reference to Chris Ayres’ excellent detailed article in the Sunday Times which you can Google and print out, and which contains a great deal of carefully sourced info. For anyone who is on Facebook, our Olly’s Friendship Foundation Page is full of facts and human stories about those who died. We’ve had some who died who never took antidepressants which are the majority on our page, and then others like Olly who did.
In the MHRA’s most recent guidelines they imply that if on RoAccutane you report low mood or psychiatric problems, your GP can quickly sort this out. We maintain that this is nonsense. Once the damage is done, nothing can reverse it. So far, anyway. A happy, well adjusted 15 year old girl died this May, who had not been on it long. Annabel Wright had that very day been to see the dermatologist for a routine appointment, been asked how her mood was, had said it was fine, which her mother, Helen confirms (she was planning holidays and was perfectly happy as always, had very little acne anyway) but suddenly that evening with no prior warning, went off upstairs and ended her life. Helen is campaigning to get this drugged banned and has put this on her facdbook page to circulate. This is rather like the sudden suicides we used to see in sheep farmers affected by organophosphate in sheep dip. That was something to do with acetylcholine receptors I gather. Antidepressants apparently make this problem even worse, but in the case of this girl, she had not had any. She just suddenly became overtaken with an urge to kill herself, as many suddenly do on this drug, and we don’t know why, but so many parents now find themselves on permanent suicide watch, especially after the low mood starts. It is a sword of Damocles and no one can predict if or when it will fall. and this can happen even years after taking it.
I have been trying to understand why AKATHISIA is triggered both by RoAccutane AND by antidepressants/antipsychotics and steroids, as well as other meds, and suggest, in my ignorance, that could it be our hormone balances that get interrupted by these meds? As you say Mary, we are all in this together. There must surely be co-factors.
I am most terribly sorry Mary to read of the recent loss of your son in the road accident. I had missed your interesting comments on this blog for quite a while and now can understand your absence. Despite coping with this, it is really marvellous that you are considering devoting your energies to raising awareness about RoAccutane in your group. Spreading the word really does make a difference but so many doctors are dismissive of the very real dangers. It’s like Russian roulette, no one knows who may be so affected suddenly that instant suicide can occur, or AKATHISIA build up to an unbearable level with the same result. If you need more facts and figures, please do email me.
Mary – I’ve just come something run by the NHS Trust in N Wales – the Prescribed Medication Support Service. Based in Earl St. Flint. 03000850007. Is this something you have looked at? What do you think of it? It’s GP referral only.
Thanks to you all for your kind comments. I did not put it up to request your sympathy – as acceptable as it is to receive it! – but, rather, to make a point that by sticking together and sharing we are able to come to terms with life events. Shane has found that to be so true since he was directed towards the Hearing Voices Network Wales group – they, too, are ‘all in this together’ and it helps so much.
Where we are, at the moment, as regards the RT accident is certainly harder to come to terms with since we have no one, who has been similarly affected. to compare notes with – there must be very many families going through similar circumstances; if only we were able to link up I’m sure it would help us all. I know I could reach out through social media and suggest such a group – but seeing the lack of response to the AD withdrawal group does not fill me with hope of success!
Susanne – we have indeed been in touch with the NHS group that you mention. I met with the relevant person for Prestatyn around a year ago. She was very keen to promote our group and felt that she had one or two clients who would possibly be interested in joining our group. We invited her to come along if she wished so that she could better see what was our intention. Nothing came of this. When we had our second Open Meeting with David, she attended and brought with her a young workmate. She was MOST impressed by the whole evening and the friendly atmosphere created by all present there. She wished to arrange a further meeting with me – again to see if, between us, we could move things on.
That meeting took place last Wednesday. Due to our present circumstances, the meeting turned out to be more of a ‘cathartic session’ for me than a discussion about withdrawal matters!
The problem that she finds is that no one seems to want to attend these types of meetings, as beneficial as we all know they can be. She works on an individual basis, supporting those who are withdrawing from prescribed medication. She finds that people will turn up for her sessions but shy away from a suggestion of any group meetings – whether due to lack of interest or time or a simple lack of realisation of the possible benefit of such . Their work is by referral only, as you say, and they link up with the community mental health teams and with some doctors’ surgeries. Although they’ve been on the local scene for more than 20 years – first started in Mold, Flintshire – their progress has been very slow. They now cover the Wrexham area as well as parts of Flintshire and Denbighshire. At present they are moving towards covering parts of Conway, Gwynedd and Anglesey. So little is known about their service although it was praised by Senedd after it appeared in Stevie’s petition paperwork. In fact, a suggestion was made at that point that the idea should be introduced nation wide.
The person that I meet with is still promoting our group at every opportunity and we have promised to remain available should any of their clients show an interest in our withdrawal peer support group.
My sincerest thoughts are with you and your son, at this time of sorrow.
Just know that you are in my prayers.
My heartfelt sympathy goes to you and your loved ones.
Lots Of Love,
Tonight, Monday 29th July, there was a ‘Dispatches’ programme on Channel 4 about young people feeling depressed, having no one to talk about their feelings to, and because 9f the long wait for Therapy, getting prescribed antidepressants which are not really helpful, most GPs feel. Prof Timimi commented that life is tough but we can be resilient if we are encouraged to see that strong emotions at these times are normal under stress, but we are not ‘mentally ill’ needing antidepressants with side and withdrawal effects that can be harmful.
Mary shows here that people are not keen on joining groups to concentrate on withdrawal from ADs but that at the same time, we all need people to talk to and share common experiences.
Our son Olly knew this, from his own experiences of feeling so low on RoAccutane isotretinoin. This is why he was building a Centre for Creativity. You get together to make or do something interesting and positive, and in so doing, whilst feeling diverted, often despite yourself, from feeling wretched and lost, you find things getting more into perspective and you talk along the way about worries and experiences. But they come out sideways, if that makes sense, once you get to know the group. It works. It works! Honestly, it WORKS….. We’ve done it here at home for years, we even made an ITV programme about it in 2004. So WHY are those who make NHS policy decisions not listening and acting? Do we really need to ask? Because the drug companies want to sell their wares and somehow, God knows how, they have brainwashed the world into substituting their antidepressants for listening time and common sense and being constructive. So the drugs bill goes up, the nation becomes routinely drugged, hope goes out the window, gloom and misery and weariness takes over. This isn’t true mental illness, it’s just spiders capturing unsuspecting flies in their webs and binding them fast so they can’t escape. And, like Prof Timimi says, it’s very worrying indeed.
It was a very good 30 minutes of insights and honesty. Channel 4 ‘Dispatches’ is much braver that the BBC for making these investigative programmes. Hats off to them. Let’s have some more, some examples of solutions….creativity in the community with slight of hand support and happiness once more.
Very encouraged by absence of pro-psychotropic drug propaganda and denial of ADRs – usually dominating antidepressant Media coverage.
If this excellent production team were to follow up with a second documentary on PSSD, and if those young people who bravely spoke out were aware of the potential damage to their sexuality, (sometimes for life) –
would they still be accepting prescriptions for/taking SSRIs/SNRIs?
Why aren’t their prescribers warning them?
Totally agree with you Heather, it was an encouraging programme in the sense that the voices of ordinary people were there without the usual comeback from the ‘voices from above’! Half an hour, of course, was nowhere long enough to get in-depth about what’s going on but it was certainly a huge step forward towards sharing the reality of the situation with the audience – not only about ADs but also about there not being support available at the point of need.
The prescription pushing that happens in very many cases is not only true of psychiatric medications. Recently, having used pharmacy strength cortisone cream for stress-related eczema on my lower leg without success, I had an appointment with a practice nurse requesting a stronger version ( which I have been prescribed in the past for the same problem but on my collarbone). There was the usual “How can I help you today?” to which I began to explain that I had eczema on my lower leg …… I got no further as the next request was to see my leg. She took one look then ” I know EXACTLY what that is, it’s linked to varicose veins, do you have varicose veins?, it can’t be cured but we can manage it” came out in one breath. I tried again “It’s eczema, I’ve been to the pharmacy….” “Oh no, this needs a prescription, it is a form of eczema but needs to be managed with a strong moisturiser and hydrocortisone…I’ll just go and get this signed” and off she sailed to a doctor. (Having heard the ‘cortisone’ suggestion I knew I’d get the necessary ointment despite her hurry!). She was back in no time ” Both creams will last you a LONG time but when they finish we can put them on a repeat for you. I went home from the pharmacy with a bucket of moisturiser and a large – very large actually – tube of the cortisone cream. I could have supplied the whole village such were the size of the creams! Three days later my skin had returned to normal, no sign of the condition that ‘could not be cured but we can manage it’. Now I have a large container of moisturiser which is way too greasy for normal use, which will be wasted. I shall hold on to the tube of cream incase of another flareup! The moral of this tale ? – lack of listening to patients is costly
and could have caused unnecessary anxiety about an ‘incurable skin condition far worse than ordinary eczema’. The modern idea seems to be to think of the worst case scenario and treat it – whether it’s needed or not. Any wonder the NHS is in such a state?
I’ve been mulling over what Dr David Healy asked during our email conversation which was the impetus for this post. Whether what we were doing, and/or what he was doing, was really helping the situation, despite our respective best intentions.
I’ve also been thinking about the report Olly’s dad and I wrote, which we delivered and spoke at length about, to the Suicide Awareness & Prevention meeting with the County Council, Health & Care NHS Trust, Police, fire brigade, and other agencies a month ago. There have been no shared Minutes fed back from that meeting, no suggested changes of policy, no new actions proposal list. No comment from officialdom on what we three parents said, at some emotional cost to ourselves and from the heart.
We’ve been this week to a Mental Health Carers Group meeting where representatives from Samaritans gave us a talk for an hour and a half on how they work their purpose, the guidelines they work to, etc. Needless to say, they did not know what AKATHISIA is. The man who delivered most of the talk, knew the word from somewhere, he said, but not what it meant. He sure does now. He went off with our RoAccutane leaflet, plus refs for http://www.MISSD.co, RxISK etc.
But, like DH said, are we really doing the right thing? Will officialdom REALLY ever be more than a talking shop with no real action or change of policy? One of the parents in our group lost a son to Suicide who it looks like had schizophrenia, but. I don’t think they got as far as a diagnosis though he’d been ill, behaving really bizarrely, in addition to hearing voices, for years. So, to try to understand that condition better, I’ve just read ‘Schizophrenia – Who Cares’ by Tim Salmon. Written about his son. Tim Salmon is a journalist, he writes well. But his book spells out clearly what so many of us know only too well, whether it be about available treatment for the seriously mentally ill for whom drugs do probably help and who need places of safety in hospital when I’ll, or the anxiety sufferers trying to just cope with stress which lands them in the antidepressant trap. No one really cares enough to really listen, really grasps the core of the problem, because being a talking shop full of platitudes and head patting is the norm. Mr Salmon’s son is a bit better now than for many years, and yes, he does use medication but much less harmfully and in lower doses than before. But his dad has spent his life, alongside his journalism, battling to keep him safe,despite the lack of common sense of the bureaucracy around him. I’m reminded of where we came in on this post, with Bob Fiddaman’s comment, ‘we need a good journo.’ We sure do. And now the others here saying how good the short C4 Dispatches programme was. This is really the only way left to us to go. To wake the sleepers before it is too late for all of us. Appealing to officialdom is probably whistling in the wind. We are not helping the situation, DH is probably right.
And this includes the MHRA. A recent meeting with them, where the story of another harrowing sudden suicide on RoAccutane isotretinoin was recounted to them, Ian Hudson CEO included, elicited the usual sympathetic comments but the admission that ‘they cannot ban this drug’. (!). Ian Hudson is stepping down, ( ? retiring ) in September.and was asked by one of the more forthright members of our group whose young have suffered post RoAccutane, well, was APPEALLED to, in the light of this, whether he could leave as his farewell legacy the banning of this lethal drug which, according to the MHRA yellow card scheme has taken 26 lives now since January this year. He could make a real difference as his parting gift to us all she begged. We shall be watching to see if he does, but we are not holding out much hope, about this or any of the other issues we raised.
The world sleeps on in its complacent drug-filled state, as we can even see in the C4 TV series ‘Doctors Behind closed doors’ tonight….’ have another antidepressant dear patients, please do, up the dose of your galbapentin, up the dose of everything, you have have more and more and more’ just like Mary said here. How can we hope to make a difference when this ethos reigns?
A final thought, given to me by a very deep-thinking retired GP recently. The NHS are actually doing the drug trials for the Pharma companies for them and saving them time and money by unleashing their less than vigorously tested poisons/drugs on unsuspecting patients and waiting to see what happens. We are all guinea pigs in the end. Not in every case of course, but maybe quite a lot of the time. No wonder we are where we are.
Seroxat did prove to have much evidence against it, as the MHRA four-year investigation proved.
Dr. Hudson gave testimony in the US via satellite for Paxil.
I fear that the only course of furthering the dangers of all these drugs is for the UK to make strident headway in bringing a court case.
I think, then, and only, then, ‘all people’ might sit up and listen,
however, the constant pressure applied to bring all dangers to the fore, is in no way wasted, and the more it is done the more it gains pace and can only bring an element of ‘bitter-sweet’ satisfaction to those who have put so much in to it …
The amount of work you do is phenomenal, Heather, and I am convinced that one day you will look back and say ‘we could not have done more’ and whether it reaps its own rewards or not is truly in the Lap of the Gods …
Thanks for these good words Annie. You’re so right about it all being in the Lap of the Gods. It’s like a Hydra, you tackle one head and another pops up. Exhausting and frustrating. Sometimes it feels like we are all going round in circles or in a maze, and ending up right where we began. We need help and support and above all, action, coming in from all directions, and ways of looking at all this that we haven’t yet thought of. Like Bob Fiddaman’s comment said, we need those clever brave good journo’s desperately.
Your sleuthing Annie is superb and tireless. We have learnt so much from your links. Thank you!
BOB FIDDAMAN @Fiddaman 7h
Dr June Raine will become interim Chief Executive of the Medicines and Healthcare products Regulatory Agency (@MHRAgovuk) from 20 September 2019. Now read the letter @DrDavidHealy sent her 19 years ago.
Rather than run the risk of being beheaded for writing anything negative about her, I shall point you to the following letter that Dr. David Healy sent her in the year 2000 – 9 years ago!
I believe that this will in due course be seen for the extraordinary state of affairs that it is.
A great number of people have in recent years been told that when they begin to feel ill on discontinuing treatment that this is the recrudescence of their mood disorder rather than a discontinuation syndrome from their drug. I would imagine that a great many such people and others on their behalf will feel extraordinarily let down and angry when faced with the evidence that I’ve been faced with.
If one person listens, and becomes aware of AKATHISIA as a recognisable and manageable adverse drug reaction to psychotropic and other prescription drugs, then that may be one individual and their family and loved ones, spared the suffering that we have seen and strive to endure.
When I so desperately needed to diagnose akathisia, I had practised medicine for 37 years in total ignorance of this common and potentially lethal, drug induced chemical brain injury.
Had I been taught about it, our loved one could have been saved from devastating injury, possibly in only a few weeks.
How can we not be driven by such preventable tragedy to try, each in our own “best achievable way”, to campaign for knowledge, skills and awareness amongst prescribers and patients?
The words of Sister Helen Prejean, an 80 years old Chicago nun and global campaigner against the death penalty on BBC Radio 4’s “Sunday” this morning seemed to encapture our “best efforts”.
She said : –
“I always think of it like bubbles rising in a pot.
I was among the people who were speaking out on this.
There’s a whole crowd of people doing this. I was one of them”.
I have to believe that with the opportunities presented by Blogs like RxISK and D.H.’s blog, and inspired by those few professionals who are “Truth Speakers” –
(At such enormous personal and professional risk) –
As our “bubbles” intensify in number, volume and power, the lid must be lifted on this most deeply “shameful era in the history of medicine”.
When Side Effects Turn Deadly
In rare cases, antidepressants and other psychoactive drugs cause a condition called akathisia, which can drive people to end their lives
SSRIs in children: NICE guidelines may have increased their use
BMJ 2019; 366 doi: https://doi.org/10.1136/bmj.l5063 (Published 07 August 2019) Cite this as: BMJ 2019;366:l5063
Guidelines from the National Institute for Health and Care Excellence (NICE) on antidepressant treatments in children and adolescents may have encouraged doctors to prescribe selective serotonin reuptake inhibitors (SSRIs) despite warnings from drug regulators, a study has found.1
Researchers from five UK universities assessed the impact that the Committee on Safety of Medicines’ (CSM) 2003 warning and the 2005 NICE guidance had had on antidepressant prescription rates in children and adolescents in UK primary care.
They found that an increasing trend in SSRI prescriptions had reversed after the CSM warning. But the publication of NICE guidance two years later led to newly increased SSRI prescribing of the three drugs studied: fluoxetine, citalopram, and sertraline.
During the late 1990s …
In TheBMJ 7th August 2013
SSRI’s in Children: NICE guidelines ‘may’ Have Increased Their Use. (! weasel wording to protect their backs as ever).
Researchers from 5 universities studied 3 prescribed drugs – fluoxetine , citalopram and sertraline. – Who’s sorry now? Watch them squirm out of admitting their disgrace.
Daughter’s death leads to Fringe debut at 79
A 79-year-old woman will make her debut as a playwright on Monday with a play about the potentially devastating impact of prescription drugs.
Millie Kieve’s production, Cruise to Hell, is based on her experience of her daughter’s death in 1995, caused by an adverse reaction to medication. Inspired by one-woman shows she had seen at the Fringe, Kieve, an actress, felt moved to tell her story on stage in the belief that it could help to prevent other people going through the same turmoil.
“I believe creatively that raising awareness can save lives because so many people have told me ‘I had no idea’,” she said.
Karen, her daughter, was unwell when she fell to her death at the age of 30 from a window that had a broken catch. She “was overdosed on a drug, given three times the dose she should have been given”, Kieve said. “It was an anti-Parkinson drug to stop the side-effects of a psychotropic drug.”
The label on one of the medicines said that it should be prescribed for three months, but she said that her daughter was kept on it for 18 months at three times the normal dose.
“All together she was in a confused state, she looked grey,” Kieve said. “She had auto-immune thyroid disease, they found after she’d died.”
After Karen’s death Kieve set up a charity, Adverse Psychiatric Reactions Information Link (April).
Despite having an early passion for the stage Kieve did not act professionally until she was 40 because of her husband’s misgivings.
The loss of a close relative “made me rethink life” and spurred her to enrol in drama school, she said. Her daughter died just after Kieve had returned from a touring production of Fiddler on the Roof, which made her turn away from acting and towards charity work.
She often wondered what would have happened if she had known more about the medication her daughter was taking. “If I’d known, none of this would have happened. We wouldn’t have lost Karen. You never know, maybe I’d be in a musical on the West End.”
Cruise to Hell is at the Space on the Mile from August 12-17
Well done to Millie and April Charity, hope its a sell-out.
Thanks Annie for this information re Millie’s play. She is a wonderful lady, a great inspiration. One of our first contacts in our group of RoAccutane campaigners told us about her, she had been a marvellous friend to him and his wife. We started following the work of APRIL after that. Like you Annie, we hope indeed it’s a sell out, wish we could get up to Edinburgh to see it. Maybe the West End Theatres will take it up.
A Wee Review for you, Heather, from someone who got to go …
Isn’t this a brilliant piece of news! I wonder if the Scottish daily papers, radio and TV have been brave enough to give a good account of this production? Let’s hope that it catches the eye ( or ear) of someone with enough guts to take it as a ‘travelling production’ now – either that, or finds a TV company willing to work on it and produce it for their use. Katinka – do you have irons in any relevant fires I wonder?
I put a visitor comment on Susan Calman’s Facebook page two days ago as she’s up there in the Edinburgh Fringe now, asking her to go to see Millie Kieve’s wonderful debut production. She writes about mental illness and how it affects her in her two recent, very amusing, books. I thought it would be something very much in her way of thinking, but sadly my comment has not appeared. So far, anyway. If anyone could lift up and carry this performance forward in front of the public to reach dizzy heights and universal acclaim, I’d think she could…with all her ideas on kindness, help your neighbour, conquer fear etc..never mind.
That’s a shame Heather – bearing in mind she’s an ex lawer – but then she is also doctor Calman’s daughter ie ex chief medical officer first of Scotland then Uk (or England)
Just some links to show even more of the astounding work been carried out by Millie and the April Charity
Adverse Psychiatric Reactions Information Link
Promoting awareness of medicines that can harm mental health
Joined 10 years ago|London
These edited films are extracts from talks by leading experts in pharmacology and psychiatry –
at our 2008 conference
h009 David Healy- When treatments go wrong – APRIL charity Adverse Psychiatric Side Effects Conference
009 David Healy- When treatments go wrong – APRIL charity Adverse Psychiatric Side Effects Conferencettps://vimeo.com/16016655
It’s just so sad that the campaigning still needs to go on at all.
Re: Suicide prevention in England – what is missing here?
Marion has spelt it out in thebmj
Yes, very good, as has Kristina Gehrki
A Deadly Aversion to Critical “A’” Words?
Suicide prevention in England
BMJ 2019; 366 doi: https://doi.org/10.1136/bmj.l5102 (Published 13 August 2019) Cite this as: BMJ 2019;366:l5102
The medical and scientific professions persist in ignoring the potential contribution of psychiatric drugs to suicide – Another rapid response in thebmj by Peter Gordon, re above
John Read @ReadReadj 7m
John Read Retweeted Michael P. Hengartner, PhD
Safe to say the tide has actually turned. The minimisers and deniers are now decidedly on the wrong side of history. Thanks mostly to the thousands of AD users who have been struggling for years to make their suffering public in the face of professional indifference.
Michael P. Hengartner, PhD @HengartnerMP 2h
Our new paper (open access) out now in Epidemiology and Psychiatric Sciences with James Davies and John Read @ReadReadj @CEP_UK @joannamoncrieff Antidepressant withdrawal – the tide is finally turning
Withdrawal reactions when coming off antidepressants have long been neglected or minimised. It took almost two decades after the selective serotonin reuptake inhibitors (SSRIs) entered the market for the first systematic review to be published. More reviews have followed, demonstrating that the dominant and long-held view that withdrawal is mostly mild, affects only a small minority and resolves spontaneously within 1–2 weeks, was at odd with the sparse but growing evidence base. What the scientific literature reveals is in close agreement with the thousands of service user testimonies available online in large forums. It suggests that withdrawal reactions are quite common, that they may last from a few weeks to several months or even longer, and that they are often severe. These findings are now increasingly acknowledged by official professional bodies and societies.
We hope that these advances in research and practice will ultimately benefit the millions of antidepressant users who need help. In September of this year researchers, clinicians and ‘experts-by-experience’ from 12 countries will gather in Gothenburg for a meeting of the recently formed International Institute for Psychiatric Drug Withdrawal (http://www.iipdw.com). It does seem that the academic and clinical communities are finally beginning to grapple with the issues that the international online community of antidepressant users (e.g. http://www.letstalkwithdrawal.com; https://www.survivingantidepressants.org) have long been addressing. It is welcome that academic psychiatry, in growing quarters, is finally catching up.
Prof. Peter Gøtzsche @PGtzsche1 1h
Psychiatrist David Healy: How can the Cochrane Collaboration justify that their reviews are based on ghost-written articles and no scrutiny of trial data due to lack of access? As deep a betrayal of the core Cochrane mission as it is possible to imagine. https://bit.ly/30saxIi
6:51 am – 24 Aug 2019
This essay looks at the crisis in the context of the disastrous effects of medication for paediatric depression on children as a consequence of the suppression of adverse findings from clinical trials.
…the stakes in the current crisis could not be higher.
Michael Z Freeman @BC_Man
Replying to @PGtzsche1
Have you seen this ? A brilliant article https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3421124 …
10:28 am – 24 Aug 2019
Prof. Peter Gøtzsche @PGtzsche1 6h
Prof. Peter Gøtzsche Retweeted Michael Z Freeman
thanks for alerting me to this. A lawyer who argues big pharma should be sued for organised crime. I wrote a book about this in 2013, which he quotes: GØTZSCHE, DEADLY MEDICINES AND ORGANISED CRIME: HOW BIG PHARMA HAS CORRUPTED HEALTHCARE
A Call to Prosecute Drug Company Fraud As Organized Crime
51 Pages Posted: 17 Jul 2019
University of Illinois, Springfield; James Madison University – Finance and Business Law Program
This article argues that drug companies operate like the Mafia and that the government should therefore prosecute prescription drug fraud as organized crime under the Racketeering Influenced and Criminal Organizations Act (RICO)
Minimising risks of first trimester exposure: Assessing low mood during pregnancy – in thebmj
‘This excellent review will be widely read and used by practising clinicians . Prescribing antidepressants in pregnancy is a familiar dilemma, but, at ~5%, the prevalence of antidepressant prescribing in trimester 1 is high enough to make this a public health concern. We identified a dose-response association between selective serotonin reuptake inhibitor (SSRI) exposure and major congenital anomalies or stillbirth’
James Moore Retweeted
Christopher Lane @christophlane 3h
Antidepressant Withdrawal: Two decades to recognize a problem | My latest for @PsychToday
Christopher Lane Ph.D.
Antidepressant Withdrawal and Scientific Consensus
Why did academic psychiatry take two decades to recognize the condition?
Posted Aug 26, 2019
That is where we are. This is what happens when a “preferred narrative” collapses under the weight of long-suppressed counter-evidence. Those who have invested decades and careers in its assumptions are likely to try to cling to its illusions, seemingly unaware that in doing so they’re misinforming their patients on the high probability of AW and other adverse effects.
Shares of pharma companies soar after Johnson & Johnson sees smaller-than-expected opioid fine
PUBLISHED MON, AUG 26 2019 5:14 PM EDT UPDATED MON, AUG 26 2019 5:27 PM EDT
And no individuals are being jaled by the sound of it – the crime gets distanced/abstracted by statements that ‘the company’ has been fined. ‘They’ (who are ‘they’?) can afford to pay as much, or as little, as any judge fines them and still stay in the dirty business.
Thanks for sharing this insightful conversation and for all your great work also Heather.
For me the absurdity of it all, what you are up against to save lives (& not just to save lives but lives lost post enduring horrific suffering) will also always be difficult to process.
So what we are effectively dealing with is the most well financed, most sophisticated and most many tentacled octopus (as Kristina K Gerkhi imagines it) in the brainwashed world & the only viable way with the one word the world needs most, akathisia, like a planet on fire through the eye of a needle, to try to save lives is by getting through perhaps to the people themselves via famous people & celebrities etc.
To make it more low risk or less “controversial” for any famous people anyone may find it possible to get through to (as difficult of course); to deal with the mind-set most people are in & to bypass KOLs pitting grieving families against grieving families rather than addressing the issues, but to allow people that vital moment of realisation to “discover” that SSRIs can also cause this horrific ADR akathisia, maybe a need to re-market raising awareness?
Maybe to include SSRIS very near the top of a list of drugs which can cause akathisia but to feature an ‘ALERT’ style story/news on someone who suffered from akathisia from a non ‘Mental Health’ Drug – to help people get it & that needed moment of realisation for themselves? Invite them to check the list…
Rxisk’s post on how 60yrs ago Pharma got its luckiest break with the word akathisia…..well suited to those famous people already somewhat educated on Pharma and already openly speaking out against Pharma or may piggy back well on present dismay and outrage with Perdue etc & Johnson & Johnson etc.
To the people, if possible to get any famous person on board, a Social Media Awareness Campaign optimised for virality featuring people semi-nude (all privates covered of course & not depicting themselves sexually) as akathisia makes you “want to jump out of your skin”??.
Not fully considered. But it would get people talking if an organised campaign.
There has to be a way through & to bypass the conditioned mental road blocks of most people (no mention of #pharmaharm either: as bad as the word SSRIS for switching people off) & which may protect any risk averse but sympathetic possible famous advocates.
I’d get my step daughter who suffered also from suicidal #akathisia or what may have developed into the full grip of akathisia (pacing, wailing, unable to sit still, demanding her parents help her kill herself, later aggressive & violent, after missing one pill) to make an appeal as I know she would wish to – all heart & socially minded – but too young, ill and vulnerable.
Couldn’t hunger strike for the same reason.
Don’t know. So frustrating. Power. Influence. Money.
Or one damn ‘safe’ I second tweet alerting people to this new life threatening ADR they have just heard of by a famous person with millions of followers.
Just a crazy world.
Dee, I very much appreciate your wise words. I will confess that having read Susan Calman’s books (for anyone who hasn’t heard of her, she’s a comedian and ex-lawyer, self effacing and seemingly a warm open-minded extremely bright person) I was captivated. The books are ‘Cheer Up Love’ and ‘Sunny Side Up’. They are touching, honest and funny and they deal with depression and anxiety and the feeling that many of us have, that we don’t fit in. Particularly for young people, I think they could be life savers. She became very well known after doing well on ‘Strictly come Dancing’.
So, I did something I haven’t done since I was 13 when I wrote to my favourite film actor, Gregory Peck. (From that you can guess how ancient I am, but I am young in heart, fear not, and with plenty of fight left in me). I wrote to Susan Calman, who exuded empathy from her well written books, and I told her about AKATHISIA, indeed I made her some tiny things for Easter for her miniatures collection, and I explained how important, as an author and lecturer myself, i felt it was to spread the word, save lives etc. I told her how we had promoted her books on our Facebook site. She writes in her books that she only uses diazepam for flying, no other drugs. Her father was Medical Officer of Health for Scotland. I found that interesting. She seemed so reasonable, focussed, funny and thoughtful.
Anyway, months passed and I heard nothing. Eventually I tentatively emailed her publicity agent just to see if she ever got my parcel. More many weeks passed and then the agent said yes, she’d got it all and thank you. Anyway, I wasn’t daunted but later recently commented on her Facebook page that Millie Kieve’s wonderful play was running at The Fringe and could she go see it, or at least mention it on her site. She was up at The Fringe herself at that time. Sadly my comment never appeared and I don’t think she mentioned it. I hope she may have seen the play, I don’t know.
I guess I must be becoming cynical in my very old age, but I also feel somewhat foolish for what I did. I get many letters, to my delight, from people who used to read my books as a child and are buying them again for their own children (and even grandchildren). I always write back to them, it only takes a few moments. Without my readers, where would I be? But if one writes about mental health, and being kind, which is Ms Calman’s theme, surely reading about AKATHISIA and saving lives, would energise and interest her? Or are all these ‘how I deal with my mental health’ books just a cynical way of capturing the current market. I’m sad, if that’s the case. Like you say Dee, we so need someone in the public eye, someone respected and genuinely liked, to use their platform to do some lasting good. I hoped in Ms Calman we might have found that person. I feel rather stupid now. I guess we have to keep searching…..
I have a long history of working in this field, in the United States. I have worked in CPS, child protective services, and also worked in the Corporate Health Industry.
I CPS, at one point there was a court that required all children, in CPS protection, to have there medication approved by a judge, because there were children as young as 4 on thousands of milligrams of Thorzine a day. The Judge put and end to that.
This process has med me realize that part of the problem is that medical boards expect a certain kind of treatment, and support it no matter what the consequences, and medical boards here in the United States, cover up wrong doing, and see that as their primary job. This also applies to medication, that shouldn’t be prescribed.
Those that suffer from these poisons, have no recourse, because medical boards excuse the prescriber and following the standard of care. And since liability in the USA is limited, mal practice attorneys, usually won’t pursue a case unless it is a class action suit.
My own believe here is that medical boards should not be run by MD’s, but instead should be run in a civil system, of civl courts with legal experts not Psychiatrists, or MD’s. And this would help address some of the issues, that confront people who are faced with the grievous consequences of this drugs.