"Webster’s New World Medical Dictionary provides a simple definition of a biomarker as “a biologic feature that can be used to measure the presence or progress of disease or the effects of treatment.”" Patricia Boksa, PhD, 'A way forward for research on biomarkers for psychiatric disorders'
I'm not a scientist so what do I know? Yet I'm not convinced of the biomedical model of mental illness and therefore the search for biomarkers. I didn't believe it when labelled with a lifelong mental disorder and thought that psychiatry had got it wrong. And proved it by getting off the psych drugs and back on with my life. I did the same after 2 episodes of puerperal psychosis 20 years before that, not so easy nowadays.
I didn't believe it in the 1960's when they labelled my mother with schizophrenia and gave her lifelong three-weekly injections of depixol until her death in 1998, aged 68. I didn't believe it in the 1970's and 1980's when my two younger sisters had mind altering states, were hospitalised and had to take psychiatric drugs, sometimes at the same time as me but in different psychiatric hospitals. I didn't believe it in the 1990's and 2000's when my 3 sons were labelled with mental disorders, experiencing life transitional mind altering states entering adulthood. Even though they write it in our psychiatric notes I don't believe a word of it. I resisted their predictions, in defiance when I could and got better.
Call it recovery if you like although recovery has somehow lost its individuality and become a corporate strategy in the hands of government, a tool to reduce welfare benefits. I don't want to be part of a recovery movement that's top-down while at the bottom of the pile some of us are still being consigned to the SEMI detached dwelling of severe and enduring mental illness. Declared non-compliant, treatment resistant, lacking insight, mentally disordered, genetically unsound, brain-diseased. Scotland's new mental health strategy keeps up the great divide with its references to "common mental health problems" and "severe and enduring mental illness". Them and us. The wheat and the chaff. Or so it seems to someone who has the label and whose family have been targeted because of a mother's label. Generational discrimination.
At the end of last year I attended two conferences in Scotland that focused on the science of the brain in schizophrenia/SZ and biomarkers: the launch of the Glasgow Psychosis Research Network 'Perspectives on Psychosis Research' and the Scottish Mental Health Research Network Annual Scientific Meeting 2013, 'Mind and Body in the 21st Century'. Both of them difficult events for me to sit through, not being a scientist, and more specifically being a person with lived experience of "mental illness". Neither were a celebration of the differences in human behaviour or the recognition of life's difficulties and traumas that impact on a person, outwith their control. It seemed to be mice and people side by side on presentation slides as if one and the same. Dehumanising portrayals of mental distress without recourse to spiritual, existential or phenomenological considerations.
I had opportunities to ask questions and have a say at both events, in
solidarity with another expert by experience, as we took turns to speak at the mic, his focus from scientific background, mine more narrative and personal. At the morning tea-break in Glasgow, I spoke to a professor of neuroscience at Strathclyde University who had shown "translational" transgenic mice (which contain additional foreign DNA in every cell allowing them to be used to study gene function or regulation and to model human diseases) slides. I asked her about the spiritual dimension, where did it come in and how did this relate to mice? Thinking about how in psychosis there can be a sensitivity to the world, seen and unseen: God and the devil, "why am I here?", "I have been chosen", "I am special", "they're watching me" and feelings about "otherness". The professor looked at me blankly as if this had nothing to do with SZ and brain chemicals. Correct.
There was talk of Mitsubishi pharma funding and 20 new drug targets, serominic compounds, Wyeth and Pfizer (notice they are now merged). DISC1 was also mentioned, a Scottish invention from 1970 and a family who were found to have a gene mutation and psychiatric "illnesses":
"The Disrupted in Schizophrenia (DISC) locus on human chromosome 1q42 has been strongly implicated by genetic studies as a susceptibility locus for major mental illnesses."
"The function of DISC1 is as yet unknown"
"To characterize the DISC locus in mouse, we constructed a mouse BAC clone contig across the region."
"Mouse RNA samples were isolated from adult and fetal brain and heart tissue."
[quotes from 'Evolutionary constraints on the Disrupted in Schizophrenia locus']
At the lunch break in the Bute Hall, Glasgow University, I mingled with the psychiatrists, scientists and students, interesting conversations about remission versus recovery, connecting with a young student who spoke of a relative with a schizophrenia diagnosis and the challenges of the label. We had much in common.
A welcome diversion in the afternoon was the session on psychological therapies from professors Max Birchwood and Andrew Gumley, all too short, sandwiched in between the mice, the brains and the mathematical DTI tractography. On leaving the hall after 5pm I was approached by a psychiatrist who asked my opinion of the day and agreed with me that it wasn't a setting for people who experience psychosis. She was thinking of the young folk in her care while I was thinking of what I'd have felt like if believing the lifelong prognosis of mental illness and still under psychiatric treatment. It didn't inspire hope.
The Edinburgh event was hosted at the Royal College of Physicians and although I saw many people I knew it seemed they were avoiding contact, one psychiatrist waving from a distance. But I managed to pin down another psychiatrist at registration (he'd been resisting my requests to meet) and we discussed Neurosurgery for Mental Disorder (NMD) and agreed on some points while agreeing to differ on others. It was useful, maybe for both of us, to find out more about the person, for relationship is the key to understanding, in my opinion.
The first speaker at the Edinburgh event was Prof Angela Vincent, Professor of Neuroimmunology, University of Oxford, and her presentation showed short videos of patients experiencing various conditions, in states of undress, with uncontrollable movements. I found it quite upsetting and undignified to see people exposed in their vulnerability. It reminded me of the inhumane treatment of psychiatric patients who are forcibly treated when in mental distress eg the reaction to an acuphase clopixol injection after 24 hours. I didn't take any notes after this. It seemed pointless.
I got up to ask the first question and speak about my family's experience of psychoses, psychiatric labels and breaking free. At the next tea-break I was approached by a young psychologist. Rather than psychological therapies she was working with Prof David St Clair at Aberdeen University and had a poster on display 'Can eye movements be used as diagnostic markers for adult major depressive disorder?'. There was an assumption that eye movement dysfunction can mark out schizophrenia and bipolar disorders. (Simple viewing tests can detect eye movement abnormalities that distinguish schizophrenia cases from controls with exceptional accuracy). I've since heard a psychiatrist colleague describe this as neo-phrenology and that it was first coined in Victorian times.
["As someone who worked for many years, as a clinician and scientist, with people who had had strokes or suffered from epilepsy, I was acutely aware of the extent to which living an ordinary life was dependent on having a brain in some kind of working order. It did not follow from this that everyday living is being a brain in some kind of working order. The brain is a necessary condition for ordinary consciousness, but not a sufficient condition." Raymond Tallis, 'Think brain scans can reveal our innermost thoughts? Think again', The Observer, 2 June 2013.]
Getting back to Edinburgh's mind and body (or brain) conference it seemed the young doctorate student thought that I would be glad of a test that wasn't just symptom-based. She hadn't grasped the point of my testimony which was that psychiatric labels diagnoses aren't helpful at all. Trying to mark out mental illness is like chasing the wind. A pointless exercise and yet more stigma and discrimination. People are not treatment resistant, it's the drugs that don't work. ECT is like a knock on the head, new pain for old, and NMD or brain surgery is only acceptable because of the biomedical model of mental illness. A get-out clause for psychiatric system failure.
"If researchers could develop a blood test for schizophrenia in the next few years, what are the ethical implications for instituting routine testing for "at-risk" individuals when there is currently a lack of preventative therapeutic strategies?" from Biomarkers in psychiatry: drawbacks and potential for misuse
There may well be people who experience mental distress because of physical health conditions but at present we've no way of knowing who or what. Psychiatric treatment is very unspecialised and where I live they fling everyone together who's experiencing a breakdown into an acute psychiatric ward. People with depression, psychoses, substance misuse issues, even learning disabled distressed people. And if you have a psychiatric label in your notes or in your family notes then it's an even quicker process, detained under the mental health act and forcibly treated. Therefore the eye movement research, the searching for biomarkers and the experiments on mice are pointless until people who experience trauma in life are listened to, believed and treated with respect.
Benson PJ, Beedie SA, Shephard E, Giegling I, Rujescu D, St Clair D; Simple viewing tests can detect eye movement abnormalities that distinguish schizophrenia cases from controls with exceptional accuracy; Biol Psychiatry, 2012 Nov 1
Patricia Boksa, A way forward for research on biomarkers for psychiatric disorders, J Psychiatry Neurosci. 2013 March
Shaheen E Lakhan, Karen Vieira, Elissa Hamlat; Biomarkers in psychiatry: drawbacks and potential for misuse, International Archives of Medicine 2010, 3:1
Martin S Taylor, Rebecca S Devon, J.Kirsty Millar, David J Porteous; Evolutionary constraints onthe Disrupted in Schizophrenia locus, Genomics, Science Direct, Jan 2003