As part of the Cause and Effect forum, I interviewed William by video in February 2022. Prior to the interview, he and Kate, his wife, had prepared an intake form laying out William’s prior history and his reactions to the vaccines he had. They gave me a letter from his family doctor outlining his prior medical history and discharge summaries from recent admissions to hospital.
William was 65 at the time of his first vaccination. He had retired from business a few years before but both he and Kate were physically and socially more active than ever, with multiple interests, one of which was travel.
William has been fit, slim and healthy with no significant diseases. Like huge numbers of us he has been on prior treatment for cardiovascular risk factors, mildly raised blood pressure and lipids, perhaps started because he had been a smoker 15 years previously but abstinent since.
Ten days prior to vaccination, he developed cellulitis in his right foot and was treated with cephalexin 500mg.
He has had all prior vaccines with no history of difficulties. William and Kate were happy to get the vaccine, as travel is important to them.
William and Kate had a first dose of the Moderna vaccine in April 2021. She had some pain in her left arm, he had no problems. She had a follow up dose in early August with a sore arm and feeling slightly worse the day after. He had his second dose two weeks later and had a sore arm and was achy.
Shortly after the first dose, they had a phone call to tell them that a restaurant they had been in after vaccination had reported a case of Covid. Five days after the vaccine, William showed signs of a Covid infection, with Kate showing something similar the day after.
They initially thought they had an allergy rather than Covid and got tested because of the contact tracing. Kate recovered quickly but William got worse and was admitted to hospital and subsequently to ICU where he spent nearly 2 months in a semi-coma. It was a worrying time for his family.
But he emerged remarkably well. He was discharged with the expected symptoms of fatigue, progressive weight loss and with occasional oxygen supplementation for a week. But with physiotherapy and osteopathy input, he regained strength and got back to walking energetically and engaging with life again. His blood pressure was monitored regularly and was stable and normal.
A medical friend suggested that the natural immunity he had from his Covid infection should mean he didn’t need the second dose. But Kate had also had Covid and a successful second dose and both were aware that vaccine passports were required for travel. There was also growing anxiety about the threat the new Delta variant posed. William opted to have the second dose.
Two days later, he developed a weakness of his right side and language difficulties. He was brought to the ER, where a scan was done that showed a left-sided intracranial bleed. His blood pressure was raised at the time and he was told that the bleed was caused by his blood pressure.
On the other hand, William’s blood pressure had been stable all August, and he has white coat syndrome and was frightened at being back in hospital. His blood pressure settled even while he was in ER.
The neurological ward was full – more patients than usual were having strokes and an overflow ward was opened up.
William was transferred from neurology to Rehab two weeks later and spent two months working on recovering. He made remarkable progress and has continued to do so. His blood pressure remains stable.
William and Kate have been of the view that it is difficult to establish a firm link to the vaccine but equally that this cannot be ruled out.
There are a growing number of reports of haemorrhagic stroke following vaccination with mRNA agents.
It is more likely that this haemorrhagic episode was triggered by the second dose of vaccine rather than by blood pressure risk factor. Remember a risk factor is not a disease.
In William’s case there is of course the extra element of a severe Covid infection which may have been a predisposing factor. Given the infection was so recent, it may also have been a contributory factor leading to antibody overload.
Given the substantial case that can be made that vaccination caused William’s problem, he felt threatened by doctors, all of whom he liked, advocating he have a booster dose when it became available. It’s a jungle out there.
William will not be having a booster. See Strangers in the Room on RxISK.
In July 2021, the San Francisco Chronicle published a striking article by Michelle Mello, a Stanford law professor. The similarity in the medical event and the question her story raised about further vaccination maps onto William and Kate’s story.
Michelle is a believer in vaccine mandates and her article has stumped many anti-mandate people because of the argument she offers against making a link between vaccines and injuries.
A few days after receiving his second COVID vaccination, my husband woke up seeing double. He’d been feeling unwell, but this new symptom seemed odd.
Should we come into urgent care, we asked our doctor. No, the emergency room, we were told. Twelve hours later, a brain MRI showed a tiny white spot. My otherwise healthy 45-year-old husband had had a small stroke.
Even after what one doctor called “a million-dollar workup,” no one can figure out what happened. The hunt for some underlying condition turned up nothing. The vaccine he got hasn’t been associated with stroke.
Maybe we should report it to the Vaccine Adverse Event Reporting System, the database that tracks events possibly related to vaccines, I said. The hospital care team shifted uncomfortably.
As a health policy professor who works on vaccination issues, I knew why: Anti-vaccination groups are combing those reports looking for tidbits to support their claims that the vaccines are unsafe. They’re wildly misconstruing the data, leaping to unfounded conclusions about causality — and the Tucker Carlsons of the world are helping them. Still, I worship in the church of data. The report went in.
A harder decision lay ahead. The same day my husband checked into the hospital, the vaccine was recommended for my son’s age group — and he was eager to get it.
A year of Zoom school, canceled vacations, and staring at his aquarium instead of playing with friends had made him uncharacteristically excited at the prospect of a needle jab. But even though I’m a vaccine proponent, the thought of putting this thin, pale boy at the front of the line was unnerving.
The scientist in me knew I should be hesitant to surrender to my hesitancy. I had just finished teaching a class on biases in risk assessment, discussing research on how humans tend to err in sizing up risks and making decisions. People give too much weight to rare risks that happen to be top of mind because we’ve just heard a news story about them or we know someone they happened to.
We’re also prone to omission bias, or higher tolerance for risks arising from inaction than for those arising from affirmative acts. And then there’s hindsight bias — the tendency to see things differently from the rearview mirror, believing past events were more predictable than they really were. My husband pushed the mirror aside and said he’d still make the same decision if he had to do it over. For me, it was hard to look away.
I also knew estimates of vaccine risks represent average risks in the population. What if our family wasn’t average?
A vaccine expert and two other doctors told me they couldn’t imagine how our genes might elevate risk for our son. It would be reasonable to go ahead, they said. But it would also be reasonable to wait. More data on teens would be coming as the first wave of them got vaccinated. But as far as we know, the doctors said, the risk your son faces from COVID is higher than the risk from the vaccine.
Michelle went ahead and got her son vaccinated. There were no problems. The Full Story is Here.
What we now know about the failings in our assessments of risks that Michelle refers to began with the work of Daniel Kahneman and Amos Tversky, whose Judgement under Uncertainty: Heuristics and Biases, was published in 1982. Kahneman won the Nobel Prize for this work in 2002. Most people probably know him for his book Thinking Fast and Slow which was a recent non-fiction best-seller.
As Michelle mentions, when faced with events we tend to make snap judgements and in all sorts of ways these are influenced by things that we have just heard or seen. When health comes into the frame, having our judgements shaped by factors like these can lead to psychotic behaviour, or hysteria, otherwise called illness behaviour.
I was rather pleased with myself that my first book The Suspended Revolution, published in 1990, imported Kahneman and Tversky thinking into mental health before anyone else. It was an obvious way to illustrate how psychotic or hysterical thinking might make more sense than people usually figured – the key chapter is Dynamics.
The bizarre thing is doctors don’t appreciate this, even though many of us going through medical school develop multiple sclerosis and other terrible conditions regularly as a result of just this kind of thinking. Michelle also jumped into thinking fast like this, before settling down to thinking more slowly.
The implied message here is that our immediate probability thinking (fast thinking) needs to give way to large scale epidemiological studies (slow thinking), which may demonstrate for instance that there is no increase in rates of strokes following the vaccinations. If the epidemiology does show this or can be twisted to make it look like it does, some doctors might argue for booster doses.
This message is wrong. Epidemiology (including the subset we call RCTs) is not good ‘slow thinking’. Its poor thinking that throws up correlations that might or might not be helpful. In the case of plane crashes, we need to look closely at each crash and work out what happened. We would not let Boeing get away with saying there is no increase in risk from their 737 Max planes just because the number of plane crashes each year remains roughly the same.
In the same way, with an injury after a drug or a vaccine, slow thinking means getting the person themselves thinking with others, their family, a doctor or several doctors, and trying to come to a verdict the way Boeing had to do in its plane crashes.
As it turns out when Michelle’s husband, along with Michelle and his doctors thought slowly about it, with the benefit of more medical tests over time, they came to the view that the vaccine had triggered an auto-immune condition that had led to his stroke.
For someone, like Michelle, who believes in mandates, the way out of this is a medical exemption but the extraordinary situation we have been in means that most doctors are unwilling to support exemptions and without exemptions people are losing jobs and even with exemptions have been barred from travel.
A key element of the problem is something that Kate drew to my attention. When she and William went along to ask about an exemption and got turned down, she had the strong impression that they and their doctor were not the only people in the room.
When there are strangers in the room who can’t be engaged with – ghosts – no-one can think either fast or slow. The strangers’ message is you’re not supposed to think.
In a life and death crisis, such as being in mid-stroke, mid-heart attack, or mid-psychosis, we want and need strangers to do the thinking for us but this is not the case when the crisis has abated – as it had for William and Kate when they visited the Family Doctor.
But what would we or our partner do if in mid-heart attack we are faced with a stranger whose thinking is based on corrupt and fraudulent evidence – as found in the New England Journal of Misinformation. If the strangers don’t have a basis for what they are proposing to do, what then?
See Strangers in the Room.
Kalevala Wampum © Nina Otulakowski April 2022
Copyright © Data Based Medicine Americas Ltd.
If the strangers don’t have a basis for what they are proposing to do, what then?
“The main positive for us is that Boeing is admitting liability, and not diverting blame onto Ethiopian Airlines or the pilots … we wanted them to hold their hands up.”
GSK wins legal case over withdrawal effects of paroxetine after 13 years and £9.33m in costs
Thinking fast and slow –
Stephen’s Voice – Suicide Prevention
This was aired 3 days before Stephen lost his battle with #akathisia and died by medication-induced suicide. Absolutely broke my heart to watch this. If only we had seen this at the time. #PrescribedHarmAwareness
“We’re in a dream, we’re in a video game…..
“no one’s made the connection…
“I had just finished teaching a class on biases in risk assessment, discussing research on how humans tend to err in sizing up risks and making decisions. People give too much weight to rare risks that happen to be top of mind because we’ve just heard a news story about them or we know someone they happened to.
We’re also prone to omission bias, or higher tolerance for risks arising from inaction than for those arising from affirmative acts. And then there’s hindsight bias — the tendency to see things differently from the rearview mirror, believing past events were more predictable than they really were. My husband pushed the mirror aside and said he’d still make the same decision if he had to do it over. For me, it was hard to look away.”
Michelle Mello might consider reading the posts and comments on here
Here is a good link posted here by annie
SASHA LATYPOVA’S FORENSIC INVESTIGATION INTO PFIZER’S ‘FRADULENT’ PRECLINICAL STUDIES
‘Maybe we should report it to the Vaccine Adverse Event Reporting System, the database that tracks events possibly related to vaccines, I said. The hospital care team shifted uncomfortably.As a health policy professor who works on vaccination issues, I knew why: Anti-vaccination groups are combing those reports looking for tidbits to support their claims that the vaccines are unsafe. They’re wildly misconstruing the data, leaping to unfounded conclusions about causality — and the Tucker Carlsons of the world are helping them.Still, I worship in the church of data. The report went in.
M.M. rather witlessly shot herself in the foot by admitting that she initially decided not to report an adverse effect (even when not proven adverse effects should be reported).
Also by the admission that ;the hospital team shifted unconfortably’. She is an experienced lawyer and reviewer of other’s work – and works on vaccination issues ,surely she should not have suggested ‘maybe’ the serious incidents should be reported’ but insisted with the corroboration of the team . The reason they were wary could be assumed that they have been ‘guided’ not to report and to put off any suggestion by anyone that they may report an (even suspected) adverse effect.
So how many adverse effects are being covered up by ‘proffessionals is something we won’t know and importantly they will be knowingly as well as unwittingly scewing the data on adverse events used by VAER and the Yellow Crd scheme used to monitor and ‘inform’ all of us with the aim of persuading us to get vaccinated
To use the anti’vaccination lobby as a reason to hide the truth one way or another is astonishing (not really) coming from a lawer and a person who is still on the reviewers list of a major medical journal. Presumably the editors read her account, possibly advised her what to publish..And Heres hoping the pale and thin son she agreed to vaccinate on the basis of having no safety data will be fine. M M in her article says she worships the church of data – a n oxymorononic claim by someone who doesn’t it seems understand her own decision making is making a leap of faith rather than relying on suspending her judgement until further exploration of the causes. M M gives a thoughtful academic description of decision making but then reveals how an academic theory can be too easily relied on That’s how too many of us get squashed into a box
Strangers in the room…
medical review boards…
offensive vaccine missionary colleagues…
media who might write nasty articles about us….
Did I miss anyone?
…….We’re Going on a Bear Hunt.
It appears a poster on the London Underground has got a few psychiatrists baying for its removal. The poster warns of a condition caused by, but not limited to, antidepressants & antipsychotics. Any idea why these shrinks don’t want the public to see this?
Answers to @rcpsych
An Ad for Akathisia on a train; a similar train under which Stewart Dolin was killed from Akathisia
Has anyone else seen these ads – on the Victoria line today?
Not helpful – should be removed
Quite a kickback in the ongoing responses –
Dr Annie Hickox@DrAnnieHickox 21m
Replying to @EsquireRN@JustAshleyHand 3 others
Absolutely. It worries me that some are viewing the ad as somehow being ‘informed choice’. It’s not. It is a way of commodifying fear.
Dear Mrs Doherty
Thanks for replying. I want to try to answer your questions in the most helpful way, so it makes sense to start with my understanding of the main issue you have raised.
SSRI antidepressants can cause akathisia. I have seen many patients with akathisia, caused by different drugs, and it is an extremely unpleasant condition that at its most severe can make people feel desperate and suicidal.
It’s hard to estimate how often it causes suicide or self-harm, partly because what makes people suicidal is often a mixture of problems – it is rarely caused by one thing. However, the risk is sufficiently concerning for us to be cautious at all times, especially when starting or stopping treatment. It’s essential that the doctor who prescribes SSRIs should inform the patient about this risk, as you say, though I do understand that doctors don’t want to put a patient off taking treatment & getting the balanced message of risks and benefits right can be hard.
On the national suicide prevention strategy, I need to explain a little of the background. When we came to update the strategy a few years ago, the Government wanted as few changes as possible. We were keen to add something about antidepressants after hearing from families who felt strongly about this and we thought it was best done in the section on treatment of depression in primary care which was mainly about the risks of getting no treatment. So we added a line to the key messages of this section, as follows:
“There are also risks in the early stages of drug treatment when some patients feel more agitated.” (page 27).
This may not sound a lot but at the time it seemed an important and unusual acknowledgement to appear in a Government strategy. We used “agitated” because it was a document for the general public rather than clinical guidance for doctors – that’s the job of NICE – or information for patients, which is overseen by the regulator, the MHRA. Current NICE guidance says something more specific about the need for careful monitoring in the early period of treatment, especially in younger people, because of suicide risk.
I’m sorry to hear about the difficulties your step-daughter has faced. If she has had severe akathisia on withdrawal, it’s an important point of safety to withdraw more slowly, to avoid the distress I’ve mentioned. Most people can come off antidepressants if it’s done over the right time period, and that can vary for different people.
I hope I’ve answered what you were asking about your step-daughter but if I’ve misunderstood please feel able to come back to me. Of course, I’ve “unblocked” you – happy to do this – but being in touch by email is a lot better than twitter.
With best wishes
We’re Going on a Bear Hunt …
Should you warn about serious mental health issues in a Tube ad?
Should you warn about serious mental health issues in a Tube ad?
An ad referring to akathisia, a side-effect of psychiatric drugs, has drawn both criticism and praise from clinicians and patients alike
By Miranda Levy
14 April 2022 • 11:00am
This week, travellers on the London Underground are being treated to a rather different fare than adverts for Jointace dietary supplements or a little known poem by Keats.
“Antidepressants and antipsychotics are two classes of psychiatric drugs that can cause akathisia,” warns the ad, white text on black background, in one of those strips you see above the seats. “Akathisia is a rare, drug-induced condition that can cause violence, self-harm, and medication-induced suicide. Knowing the symptoms of akathisia will save lives”.
Then follows a reference to MISSD.co, the Medication-Induced and Suicide Prevention Foundation, which has paid for 1,000 such ads to run on the tube for the next three weeks, following a campaign in US cities including New York and San Francisco.
Most people will – mercifully – be unfamiliar with the term akathisia, and its awful manifestations. Akathisia refers to a side-effect, chiefly caused by psychiatric drugs, ranging from a sense of mental unease and anxiety to severe emotional turmoil. The
Diagnostic and Statistical Manual of Mental Disorders describes it as “restlessness, fidgeting of the legs, rocking, pacing, and the inability to sit or stand still” – and the condition is often accompanied by these physical symptoms. Some sufferers find it so unbearable that they end their lives, or even harm others.
Akathisia has historically been linked to the use of antipsychotics for “unsexy” conditions such as schizophrenia: estimates reckon that somewhere between 50 and 80 per cent of people on antipsychotics suffer from akathisia. However, it’s increasingly being linked to antidepressants – in as many as one in five patients who take these drugs.
That said, according to a spokesperson at the MSSD.co, the British advertising code CAP made changes to the American version of the ad, insisting on the addition of the word “rare” to describe the incidence of akathisia.
Has anyone else seen these ads – on the Victoria line today? @DrAdrianJames @ProfRobHoward
Not helpful – should be removed
Stewart Dolin, the 57-year-old lawyer in whose memory MISSD was set up, took his own life in Chicago in 2010 – six days after starting an SSRI antidepressant. Of course, it’s impossible to prove the direct cause of Dolin’s death, but family and friends noted his extreme distress and agitation immediately after he started taking the drug.
So the Tube advert in itself was notable, but it immediately kicked off a combative thread on social media. Professor Anthony David, Director of the UCL Institute of Mental Health, tweeted a photo of the ad, tagged some psychiatry colleagues, and commented that it was “not helpful”, and should be taken down. This response prompted tens of messages from those in the “prescribed harm community,” who feel they have suffered as a result of taking psychiatric drugs.
“Where is the empathy towards those that suffer from life-threatening akathisia? Akathisia isn’t rare,” tweeted Rose Yesha. “Seldom disclosed as a potential side effect. Akathisia is often misdiagnosed as anxiety. Common sentiment before someone with aka (sic) dies by suicide: ‘My doc doesn’t believe me’”. Many commentators agreed with Yesha; for example, nurse Angela Howard wrote: “May I enquire what your objection is to millions of people being warned about akathisia as being a risk factor for suicide being issued to the general public?”
On the other side were the doctors who came in defence of their colleagues – for example, @DrMayJay, who wrote: “Not helpful & wholly harmful if somebody suddenly stops their medication after reading this, or doesn’t ask for help for fear of this!”
The akathisia ad furore is the latest in a series of controversies around psychiatric drugs: their side effects, and withdrawal symptoms, leading to some asking whether they work, or should ever be prescribed at all. Though it does have to be said that many people find antidepressants helpful: life-saving, even.
In September 2019, the Royal College of Psychiatrists released a statement finally admitting that antidepressants and tranquilisers could have significant side effects, and a May 2021 prestigious Cochrane report on new-generation antidepressants concluded that the drugs only worked “in a small and unimportant way”, warning that suicide‐related thinking and behaviour “may be increased in those taking these medications”.
“The fact we need to have these posters represents a failing in psychiatry – that doctors aren’t telling people about the side effects of medication,” says John Read, professor of psychology at the University of East London. “A grieving family has to resort to billboards: that says it all. We’ve known about akathisia for 40 years or so, yet doctors are bound by the principle of informed consent – and they aren’t always informing their patients. Some even tell their patients that restlessness is “part of their illness”.
Is there not a danger, however, that a person on psychiatric medications may see these posters, and stop taking them immediately, leading to withdrawal effects that can be equally, or more dangerous? Wendy Burn is a consultant in old age psychiatry and was president of the Royal College of Psychiatrists from 2017 to 2020. “This poster is not telling people how dangerous it could be to suddenly stop their medications,” she says. “I’m also concerned that it’s displayed on a Tube line: what if someone in distress read this, who was thinking of jumping under a train? Most importantly, if an advert mentions suicide, there really should be a suggestion of where to get help. I have every sympathy with the people behind the advert, but I’m not sure this is the best way to raise awareness.”