If I only had a brain

This is one of a series of blogs commissioned for The Power of Placebo – a national programme of events that accompanied our performance, Placebo. The ‘placebo response’ describes an effect which occurs when a person is given a ‘fake’ or ‘inactive’ treatment but experiences an improvement in health regardless. Scientific research has also shown that factors such as the colour or size of pills can impact on their effectiveness. This programme of events brought together leading scientists, cultural thinkers, artists and medics to explore how our beliefs, relationships and environments can affect our health for better or for worse.

As part of The Power of Placebo, Jon Stone spoke as part of Agents of Change: The Power of Placebo at the Wellcome Collection on Saturday 3 November 2018.

‘If I only had a brain’

By Jon Stone, Professor of Neurology at The University of Edinburgh.

‘The Wizard of Oz’, the iconic 1938 film, once received the following synopsis in a TV guide, ‘Transported to a surreal landscape, a young girl kills the first person she meets and then teams up three strangers to kill again’. Of course, that is unfair, both deaths were accidents, and Dorothy and her companions were all really looking for something important they had lost – a brain, a heart, courage and a home. If nothing else, this shows how narratives can have many interpretations.

As a Professor of Neurology, recently promoted and a little uncomfortable with my new title, I have found myself thinking about the Wizard of Oz again. People come on long journeys to see me. I am often the ‘end of the line’. They have usually lost something, often elements of all four of those things, but more importantly they have often lost something of the life they used to have, because of pain, fatigue or poor mobility. The condition I specialise in Functional Neurological Disorder, is common but stigmatised, and something many health professionals struggle with. It embodies how the brain often goes wrong, not because of what I describe as the ‘hardware’ of disease, but because of faulty ‘software’. People with FND can be paralysed, blind or have seizures. The condition is a constant reminder of our brain’s amazing capacity to do things that we seem to have no control over, and keep doing them.

My patients are sent a letter to see me and may wait many months for the appointment. I don’t know them, but they may have googled me or built up an expectation of how I might be able to help. I usher them in to my room, past the receptionist guarding the entrance and introduce them to my students or visitors. It’s an unusual situation.

Much of what I hope to achieve is through communication and rehabilitation – understanding the nature and impact of a condition better, and finding new solutions to tackling symptoms or situations in which the person finds themselves stuck.

I spend more time stopping drugs than starting them but I might suggest some medication, to promote sleep or reduce pain. I know that many of these pills don’t actually work that well compared to placebo. But I also know that is partly because placebo works surprisingly well, and the reason for this is that placebo pills can change the brain. They can change brain’s function, its software, through alterations in the strength of different networks and via changes in neurotransmitters such as natural opioids and dopamine which run that software.

In the film, the “Great and Powerful Oz” does not explain the source of his power – to do so would diminish it. Do I confess that the tablets are not that great compared to placebo, and deny someone the benefit they might receive from them? Studies do show that placebos can still work even when doctors are transparent about them[1], but they probably do lose some of their effect.

But in the film, the wizard is exposed. He is just an ordinary man hiding behind a curtain. And that is what I used to feel like too as a junior doctor, trying to do something useful while trying to look knowledgeable. We are all put on an act to some extent whether we intend to or not, but I decided a long time ago that I did not want to play the role of a ‘ great and powerful’ doctor, professor or wizard and that few patients really want that kind of performance anyway. I prefer to explain a little about placebo when necessary. Rightly or wrongly, I value transparency and trust over the preservation of my magic placebo powers.

The wizard was a fraud, a big let-down for Dorothy who had really built her hopes up. The denouement though is revealing. The wizard does replace what is lost, but by listening and responding to the needs of Dorothy and her friends. This includes a ‘Doctor of Thinkology’ diploma for the scarecrow who is looking for a brain, one earned through his intelligent support of Dorothy. The wizard persuades him that he had a brain all along and suddenly he finds a newfound ability to quote trigonometry. A placebo transaction has occurred but there is nothing fake about it, a truth has been revealed, a brain restored.

FND is a condition that has been looking for a brain for a long time. It has been many things in the last 100 years: psychosomatic, conversion disorder, even the dreaded “H-word” – ‘hysteria’. All of these describe something that is ‘of the mind’ but not really ‘of the brain’. Placebo has been the same, a response ‘in the mind’, ‘not real’. But the tide has turned. There is no mind without brain and vice versa – they are one and the same. Placebos work because they change people’s brains[2]. FND happens when someone’s brains change and gets stuck[3]. We are in exciting times when neuroscience is helping us to grasp the underpinnings of these phenomena – making what appeared to be unreal, real.

I don’t need to pretend to be a wizard, but I do need to work out how to help change my patient’s brains for the better when they have lost something. I can sometimes do that, amongst other things, by helping them to change their minds, about what’s wrong, and what they can do to get better. I will send them a letter, a certificate, to prove that I believe them and to help explain and guide them[4]. Sometimes it helps and the lost things are found. Sometimes it doesn’t.

Is this the placebo response at work? There is no trickery. Real improvements in the health of my patients occur. Unlike Dorothy I’m not in a dream. Whatever is going on here we need to work out how to harness it.

References:
1 Kaptchuk TJ, Friedlander E, Kelley JM, et al. Placebos without Deception : A Randomized Controlled Trial in Irritable Bowel Syndrome. 2010;5. doi:10.1371/journal.pone.0015591
2 Benedetti F. The Patient’s Brain: the neuroscience behind the doctor-patient relationship. Oxford: : Oxford University Press 2011.
3 Hallett M, Stone J, Carson A (eds. . Functional Neurologic Disorders: Handbook of Clinical Neurology (Volume 139). Amsterdam: : Elsevier 2016.
4 Stone J. www.neurosymptoms.org. started 2009.

Further reading:
neurosymptoms.org – Self-help site for patients with Functional Neurological Disorder.