A post on May 31st on davidhealy.org, The Greatest Failure in What Used to be Called Medicine, and the following post on the Spectre of Dissent, triggered two conversations. One was about the appropriateness of the imagery used.
The other was a long conversation initiated by Tim and then developed by Heather about what to do about Akathisia. One of the suggestions was that we have something like a Teeshirt featuring akathisia.
We now have a Teeshirt developed by Billiam James to go with his Akathisia Anthem. The Teeshirt can be bought on TeeSpring.
The other issue raised centered on how to get the message about Akathisia over to others. Heather in comments on more recent posts has let it be known that she was about to attend a conference on suicide and wondered what she could say at this that might help. There has been lots of advice to her.
This is what she finally did say:
Reporting back after Suicide Crisis Conference in Gloucester today, 10th September. Managed to stand up and speak on mike Out in front of stage, to appreciative assembled large company about AKATHISIA. I raised it in the section dealing with Trauma in Bereavement. The excellent speaker said that of all the types of bereavement. Suicide was the worst for those left behind as they don’t know, and therefore are likely to endlessly agonise afterwards, over why the loved one left this world.
I ventured, in our case, to differ. I said I wished that HAD been our experience, but that we’d known for a long time that our son intended dying, and why, mainly because of the havoc AKATHISIA played with his mind and body. (I was proudly wearing my AKATHISIA sweatshirt). I explained my frustration about people being told to come forward and share their suicidal feelings, as our son did, and then being told they are attention-seeking and to go for a walk etc. I said we had fought for months to be taken seriously, well aware he intended dying, and were met with complete indifference. He had been shamed and humiliated. I explained about the effects on some people of prescribed medications, and how Big Pharma really did not want this AKATHISIA problem addressed and spread around. So it was up to all of us to pass the word as far reachingly as we can. The audience were in warm agreement, they kindly applauded loudly, and my words ended the conference. Many took our leaflets. Others came and spoke to us and we passed on RxISK information. A really good outcome, we felt.
There seems little point in arguing with others, particularly the authorities, about akathisia, or trying to pit expert talking heads against each other. The bottom line is: Why do you not believe me?
It’s a matter of refusing to engage with or in a game. Fifty years ago in mental health we played a Freudian game. Almost whatever we said to a therapist we’d be told something like its down to difficulties you’re having with your mother. This was a game that had a set of rules. If you are very smart and your therapist particularly dozy you might outwit him but you don’t get anywhere. Even if you do outwit him – you will then be up against the serried ranks of analysts for whom your efforts to show that they are not engaging with your problem is just another manifestation of your neurosis.
In the same way now, doctors and regulators and ministers for health and companies are playing an “evidence-based-game”. They hold the rule book and you can never win. In one way or the other you will be dismissed as an anecdote or neurotic – medically unexplained symptoms – or perhaps even manipulative.
The only position that works is a Lutheran one faced with an all encompassing Catholic worldview – Here I Stand, I can do no other.
The world ultimately can’t work if we can’t and don’t believe each other.
annie says
A Place you never thought you would ever Be …
Leading by example, terrific, Heather, well done!
What Wendy Dolin did prove was that Stewart died from Akathisia
The semantics of generics notwithstanding…
As Leonie said here:
https://leoniesblog.com/2017/03/19/dolin-v-smithkline-beecham-corp/
There seemed little doubt to anyone listening that Paxil could cause Akathisia and/or a drug-induced suicide
and
Here:
https://leoniesblog.com/2017/04/20/dolin-v-gsk/
Dolin said her husband was restless and agitated in the days leading up to his suicide, symptoms of a listed Paxil side effect known as akathisia. GSK denied any link between akathisia and suicide, but the widow said that the side effect sometimes causes people to act out violently and impulsively.
Professional Suicide – The Clancy Case
March, 5, 2012 | 13 Comments
Drinking the Kool-Aid is no defense.
Suicide, or open verdict? There is another intriguing option that will be outlined in an upcoming post: Notes on a Scandal.
https://davidhealy.org/professional-suicide-the-clancy-case/
Notes (and comments) on a Scandal … why do you not believe me
annie says
Events
Each Amygdala Notes event comprises three parts: a performance of chamber music, a presentation, and a question-and-answer session. At an event, musicians present a selection of works that address drugs and medicine or, more broadly, acknowledge the intersection between music and mental health. Following the musical performance, a speaker offers insight into the drug industry – giving emphasis to the complexities of drug-based therapies.
http://amygdalanotes.org/events
At this first event, Wendy Dolin discusses Akathisia and her work as the founder of MISSD, a Chicago-based non-profit that builds awareness about Akathisia and medication-induced suicides. Zachary Pulse (oboe), Jennifer Beattie (soprano), and Adam Marks (piano) frame her discussion with a selection of works that explore intersections among music, emotion, and the mind.
Saturday
September 15 , 2018
2:00pm
PianoForte Chicago
1335 South Michigan Avenue, 2nd Floor
Chicago, IL 60605
mary H says
Heather – a brilliant show of courage, depicting exactly why the word AKATHISIA needs to be shared widely. I sincerely hope that we, all of us who read these posts, will show the same courage once our Tshirts are delivered to us. I guess that Billiam James deserves a warm vote of thanks too for taking this message on board and working it through. I knew of his name only in connection with the dreadful treatment of his sister-in-law by the Authorities – it comes as no surprise that he works so hard wherever he sees others in need of support. We could do with many more ‘Billiams’ willing to stand along with us to wake the nations up to the reality of these drugs that poison so many of our number. I’m hoping for a mild winter so that the akathisia message will be clearly seen without being covered up by thick coats or jumpers!
Laurie O says
This is all so very encouraging, thought provoking, groundbreaking. There is a lot to work with here for making a presentation or simply conversation. Heather, thank you for your example of getting out there and just doing it. And Billiam’s anthem is such a catchy tune, just what was needed. The t-shirt is great too, (though I still also like the design Auntie Psychiatry made).
mary H says
I wonder if there’s a possibility of posters with the Auntie Psychiatry design that could be useful for presentations? I take it that you refer to their clever word search here Laurie?
Laurie O says
Hi Mary, yes, the word search.
I brought up akathisia at our group last night and played the MISSD video as an intro to the subject. It seems like a really fine line between giving people information they might find useful and inducing more anxiety. Withdrawal can be so scary, wondering if you’ll ever be okay. Even this shirt and video, so much lighter than hangman idea, seem quite heavy when it comes right down to it.
tim says
The Professional Ignorance and Organised Denial of SSRI (et al) Induced AKATHISIA:
The medical undergraduate, postgraduate, and lifelong “continuing medical education” (CME), to which I, and most doctors committed ourselves, prepares us to recognise and manage some life threatening adverse drug reactions (ADRs).
We were evidently, incompletely taught as RxISK Identifies.
ADRs from penicillin induced anaphylaxis, the 20% fatal Stevens – Johnson Syndrome (and its even more lethal extreme variant of toxic epidermal necrolysis) are up-front in our day to day differential diagnosis.
Occulo-gyric crisis, a sudden onset bizarre, neurological toxicity (which I have seen only once in forty years) was immediately recognised and reversed because I had been taught to do so.
It is terrifying for the patient, for the relatives at the bedside, for the nurse who injected the post-op anti-vomit drug which caused it, as well as for the doctor who prescribed this drug.
Intense AKATHISIA is not unlike an occult-gyric crisis affecting the whole body.
It is an acute brain – central nervous system toxicity.
Akathisia is much more common, yet when I sat for several hours watching this iatrogenic devastation appearing in our daughter – (coerced into serial SSRI use for normal “exam stress”) – I was helpless as I had never heard the word AKATHISIA.
My training and experience was useless to me, and the subsequent diagnostic incompetence of the GP was also the result of AKATHISIA IGNORANCE.
This was not his fault.
Akathisia ignorance amongst prescribers is an organised ignorance.
The diagnostic incompetence of the unnecessary and brutal “psychiatrist” was to lead to abduction, incarceration, sadistic and sarcastic “nursing care” and, of course, enforced drugging with fraudulently marketed, intensely neuro-toxic “medication” which only intensified her dreadful, irreversible and life changing injuries.
I was ridiculed and rejected for trying to tell them this was not a presentation of mental illness.
I pointed out the unmistakable cranial nerve signs of neurological injury.
“It doesn’t happen on olanzapine” they scoffed in their arrogant denial of the unmistakable .
Why did they not immediately examine her cranial nerves? It is inexcusable.
The outcome? – Iatrogenic grievous bodily harms for which no one is answerable, unlike any other area of medical practice.
All life’s joys, pleasures, experiences, challenges and set-backs permanently denied – condemned to a living death.
No possibility of an apology. No Duty of Candour. No accountability.
No hope of any financial compensation to afford some token comfort when her parents are no longer here to love and protect.
What an unforgivable outcome for an alleged “evidence-based”, misguided abuse of medical power and the absolute denial of systems failure.
Now, via a much promoted, brilliantly marketed, “care service” for burned-out GPs offering “routine psychiatric treatments” it would appear that many hundreds of SSRI prescribing doctors are apparently being exposed to SSRI’s themselves.
Is this what might finally facilitate physician insight into the deception of prescribers and patients, successfully orchestrated by drug manufactures and drug regulators for so many years?
Are these exhausted physicians and their desperately worried loved ones warned to anticipate and recognise AKATHISIA?
If akathisia were to be recognised, wouldn’t it be misdiagnosed as “Emergent Serious Mental Illness” and their neuro-poisoning intensified by the denialism of those allegedly caring for them?
Our formidable challenge in attempting to reduce the avoidable psychotropic and other prescription drug induced, akathisia deaths and devastation is overcoming the extensive akathisia ignorance and denial in my own profession.
A highly resistant-to-challenge profession, which is dependent for re-licensing on the marketing power of the drug industry, intertwined (in Primary Care) with drug-dependent mainstream psychiatry.
This, the most powerful medical “discipline”, currently accused of unacceptable levels of financial conflicts of interest with the same, all powerful drug industry marketing.
Are those GPs commenced on SSRIs warned of PSSD, aware of PGAD?
Will the resulting marked dysfunction in their sexuality help relieve their burn-out and improve their psychological well-being?
Do they anticipate their imminent emotional blunting?
Are their loved ones prepared for emergent violence?
Will their undiagnosed akathisia result in their own violent deaths, as established in the Steven Dolin tragedy?
Violent, iatrogenic fatalities mis-classified as “suicide”.
It seems that we have a major failing across the board in medical education, and in the training of doctors.
I do not believe this will be successfully corrected until it becomes impossible to graduate in medicine without detailed knowledge and awareness of AKATHISIA.
tim says
Para 6 – auto-correct error.
Should read:
“INTENSE AKATHISIA IS NOT UNLIKE AN OCCULO-GYRIC CRISIS AFFECTING THE WHOLE BODY”.
mary H says
Tim, I agree wholeheartedly with everything that you say here but isn’t the main problem, actually, to do with ‘believing your patients and/or their carers’? If only doctors believed us, trusted that a ‘lived experience’ is of way more value than text book reading as regards matters of mental illness, took on board the close link between physical and mental wellbeing and started treating us all with RESPECT – wouldn’t that take us onto a different plateau, a level playing field where experience and knowledge stood side by side, each supporting the other? At the moment, it seems that nothing is deemed true unless it’s dictated to doctors from their colleges or their drug providers. Doctors cannot possibly be so gullible as to swallow all that is thrown at them – it just doesn’t make sense! They may feel that their role is at risk should they start to believe patients over pharma but, with akathisia etc. now starting to affect them, could it be that, at last, they will begin to think things through for themselves? The alternative is a lifetime of torture due to their medications – and I think that they secretly know that this is true and it is this, as well as any of the adverse effects that they may face, that proves to be the last straw in their struggle.
tim says
Yes indeed Mary H.
Listening, respect and trusting patients was fundamental to the way I was taught medicine, and how I endeavoured to practice.
My perception of imposed and unnecessary psychiatry for an undiagnosed intense AKATHISIA was entirely opposite to that ethos.
They appeared indoctrinated with the assumption that the “patient”
(aka – victim) and the family are always lying.
On one occasion, the words “I don’t believe you” were used contemptuously in response to truth.
These words were followed by immediate detention for AKATHISIA and its sequelae, and then immediate, enforced further psychotropic drugging.
Their achievement? – Further intense, irreversible physical, emotional, psychological and social injury.
I could clearly see what was happening, but I was “a doctor in denial”!
The basis of medicine must be that of empathy, and belief in our patients, based on a level of professional commitment and communication skill in the practitioner that invites security and mutual trust.
A patient may not feel able to reveal all of their fears in the first consultation.
The “extended consultation” (ie repeat consultations over time) – affords the opportunity for trust to develop, and further information to be safely shared:
“Is there anything else that you feel might be helpful to share with me”?
This approach to medical consultation was diametrically opposite to the maiming and life destroying, forced exposure to psychiatry.
The more they attempted to treat their dreadful ADRs as “psychiatric illnesses”, the iatrogenic injuries and their “therapeutic” failure resulted in their increasing anger, resentment, accusations of “none-compliance” and in a vicious condemnation of their victim.
Their contempt for the family was palpable.
These people were incapable of therapeutic communication :
“We have the power, let’s hope we don’t have use it”.
They were cruel, arrogant, and clearly saw themselves as unaccountable, and infinitely superior.
Their unwillingness to countenance intense prescription drug toxicity and include this in differential diagnosis is inexcusable.
What on earth did they go to medical school for?
Heather R says
Very encouraged by all the supportive comments here, thanks to all, and especially to Tim for all his factual and fascinating insights on AKATHISIA.
Yesterday from 9-10.30 am I was one of the guests on BBC Radio 4 SATURDAY LIVE ptogamme, which I’ve regularly enjoyed since John Peel days there. It was mostly about my books, a nationwide hunt for a lost dollshouse, as this picked up on an earlier them they wanted to pursue, but after explaining how important it was for the world to understand the word AKATHISIA and how our son died, they let me add a little bit. You can hear it for (what it’s worth, very short on AKATHISIA I’m afraid) on BBC Iplayer.
You can see a picture of what we were discussing, and the background which led into the discussion, now on Facebook for Olly’s Friendship Foundation, and also see on my previous post, my home made AKATHISIA sweatshirt, which I have been wearing constantly (not in bed) wherever I went all week, and will this coming week at relevant events too. I sat at the front of the BBC SATURDAY LIVE studio photo of guests, beside Assma Mir and the Rev Richard Coles, so if that gets into the Gallery, the world will see the word. Other guests were Rick Wakeman and the two winners of University Challenge who have become a legend, Eric Monkman and Bobby Seagull. Eric is from Canada and must therefore have heard of Billiam James. The two will definitely now know what AKATHISIA is! Useful general knowledge. The day before we spoke at length at a TASC Suicide Prevention charities meeting to some very interesting people and again spread the word about AKATHISIA, Anatomy of an Epidemic, and so on. None of them knew the word. It’s been a busy but encouraging week, and I flaunted my AKATHISA tee shirt everywhere, on the Underground, up and down Oxford st etc, and got into an interesting chat with someone on the Northern Line who had invented and was marketing a ground breaking game for dementia sufferers and may be doing one for mental health wellbeing. Onward and upward. Please share the Olly’s Friendship Foundation post if you wish, to get the word about AKATHISIA and causing suicide out there.
annie says
There is a crack
A crack in everything
Strategic thinkers … ?
or
dropping things in for effect … ?
Recently there has been a morass of complaints from Medical Professionals directed at leaders in the field.
Amateurishly fielded off …
Tactics and Strategy are now on their way in.
Distinct opposition has been noticed.
Can we suggest that people weren’t born yesterday and it’s too late in the day to start sharing innocent tweets in the hope that we will be impressed with their research when everyone else has seen miles ahead or do we just assume that playing around with tweets shows up an insincere folly in a quest to shut down all the really thinking people surrounding them
Wendy Burn
Retweeted
ben goldacre
@bengoldacre
6 Sep
So, I’m chairing a new Health Tech Advisory Board for
@MattHancock
We have all the ingredients for an industrial revolution with data in healthcare. But we need focus on getting the right nerds to do the right stuff. There will be some easy wins, and some hard slogs! Onward!
Simon Wessely
@WesselyS
2h
New systematic review of withdrawal reactions after SNRI use from the excellent Giovanni Fava and his team (link:
https://www.karger.com/Article/Abstract/491524) karger.com/Article/Abstra….
It all looks so innocent, but who are really the strategic thinkers and why has the Akathisia Anthem become our strategic output.
It’s not so much the content of the tweets they post, it’s their motive for tweeting their tweets and no one should be under any impression that this sort of thing is just ‘innocents abroad’ …
ANTHEM
https://www.youtube.com/watch?v=6wRYjtvIYK0
That’s how the light gets in
Prof. P. Gotzsche expelled from Cochrane
4 colleagues resigned
https://www.madinamerica.com/wp-content/uploads/2016/10/Moral-crisis-in-Cochrane1.pdf
That’s how the light gets in….K-K-K-K
Rory Tennes says
Great effort to get the message out there . yes it’s difficult. The ” authorities” hold all the cards and they are stubborn. Bigoted stubborn. I bought the T shirt and will wear it proudly and explain to everyone who asks exactly what akathisia feels like, what it does to a person. I know it well.
Thanks for your work !!