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What do we mean by illness? What is a disease? How do we really know that another human being is suffering? What is the difference between mental and physical pain? And if there is a difference, does it matter?
For most of us these are academic questions. For Jennifer Brea, they are the stuff of life. In her mid-twenties she was felled by a mysterious illness. About to marry, studying for her PhD at Harvard, and poised, just as her childhood self had instructed her, “to swallow the world,” she was laid low by a succession of viral infections. And then came near catatonia. She fell into a condition of agonized, almost mitochondrial, depletion. She slid away into a persistent, room-bound twilight. Light was painful. To move she had to haul herself, elbow by elbow across the floor. Her life got up and left her.
She ran the predictable gauntlet of specialists: bemused endocrinologists, rheumatologists, cardiologists and psychiatrists. There were investigations, hypotheses, bewilderments. Some said it was psychogenic, the late dark flower of an early trauma (recall that before brain scans multiple sclerosis was labelled psychogenic and dubbed hysterical paralysis.) Some said it was her immune system. Others that it was dehydration or the stress of study.
Then she turned to the internet. And found a virtual continent of fellow-sufferers. People hidden for decades, some permanently bedridden, some almost foetal with pain. Chronic Fatigue Syndrome, Myalgic Encephalomyelitis—call it what you will, here was a dispersed pandemic of unplumbed suffering.
Unrest is the film Jennifer Brea made about her condition. It is not an easy watch. She does not pull her punches. It takes us into the dark folds of a cruelly disabling condition. It is a defiant film though—not least because she makes it in dogged defiance of her condition. And it provokes ceaseless questions.
One that stayed with me is the long squabble between psychological and physical etiology. I get that to treat a condition it helps to know its cause. But what I don’t get is the insinuation—not from the filmmaker, but from some of the commentators—that if it is mental rather than physical, choice is involved. The phrase “it’s all in the mind” suggests that all we need do is change it. Change our mind and the problem dissolves. But such a view of mental phenomena is puerile. Our minds are not sovereign over themselves in these things. And the quicker we ditch that stale and exhausted canard the better.
Unrest also provokes philosophical questions about other minds. Because a devastating condition is not well-captured by current diagnostic possibilities, questions have arisen in the past about its reality. Is this suffering or elaborate malingering? There is a barbed little snapshot of Ricky Gervais in stand-up mode, riffing on ME: wouldn’t we all like time off work? The joke clangs like a stone in a dustbin. Truth is the only way we know another is suffering is if they tell us. We cannot get unmediated access to the sensations of others. It is the suffering that counts. There is a lesson for medicine here.
Unrest is heroic filmmaking. It takes a mysterious, stigmatized and invisible disorder and brings the condition and its sufferers into clear light. It is a tribute to the filmmaker and her extraordinary husband. And also a reminder, if we need it, that the world of human suffering has not been mapped in its entirety by medicine.
Julian Sheather is a specialist adviser in ethics at the BMA
Unrest is released in UK cinemas on October 20th. For more information, visit www.unrest.film
re : "Chronic Fatigue Syndrome, Myalgic Encephalomyelitis—call it what you will".
If you call it Chronic Fatigue Syndrome, you'll get psychotherapy.
If you call it Myalgic Encephalomyelitis, you'll get no treatment at all.
No ME sufferer has an issue with the suggestion of mental health because it diminishes our suffering. We understand that the distinction is mostly arbitrary and mental disease is only a different way of saying brain disease. The issue we all have is that looking in the wrong place makes finding the solution harder, especially when it is done to the exclusion of actual biomedical research. There is no more mental component to ME as there is to cancer or ALS. Psychological research has no more chances of being useful with ME than homeopathic enemas or that yoga will be a surprising treatment to autism.
This is the exact situation as multiple sclerosis has gone through, it was imagined to be psychosomatic until brain scans were developed and without surprise, all the prior research into the mental health components of MS ended up being worthless. This is the same with ME, once enough of the puzzle is found, all the work done in the mental health components will be thrown away as a complete waste so why bother doing work that is inevitably going to get thrown out? What happened to all that research going into "cancer personalities" or behavior that leads to some other disease? In the dustbin with all the other junk ideas.
Entertain your beliefs about the power of the mind all you want, it's not going to have a significant impact on people who have a metabolic, neurological or autoimmune disease. The history of medicine reflects the other natural sciences, in that every unknown puzzle was attributed to a deity, or in the case of medicine, to the patient's own mind. Natural sciences had the God of the gaps while medicine is still in the grips of the Freud of the gaps. It was never found to be useful in any predictive matter and it is unfalsifiable anyway, so we can skip all the extra wasteful steps in between and simply throw away these irrational beliefs in a vault and melt down the key.
Progress in these areas has always been about chipping away at this ignorance, where everything that was attributed to some deity or the patient's own fault eventually turns out to have a natural explanation. This irrational belief in blaming the patient for their illness has a catastrophically low success rate, one that is ever-diminishing and serves no useful purpose. Do it in parallel if you want to, but not at the expense of actual scientific research. This isn't just some puzzle or challenge, it's actively and deliberately harming people.
No matter how you think the perception is, the truth is that the continuing perception of ME as a psychosomatic disease leads to immense stigmatization, neglect and suffering and you are still contributing to this suffering by trying to equivocate ideas that will eventually be discarded as a complete waste of monstrous harmful neglect. When something has a 0% success rate, you have to be able to let it go.
What does Julian Sheather mean to imply when he says "She fell into a condition of agonized, ALMOST MITOCHONDRIAL, depletion ?
Has he not read the research which confirms that ME is a hypometabolic state and very much one which is orchestrated by dysfunctional mitochondria ? www.pnas.org/.../E5472.full
To subtly insinuate such doubt, irresponsibly undermines the emerging clarity with regards to the true nature of the illness. It perpetuates a false narrative about M.E., constructed over many years, by those who's careers have been built on psychologising a physical illness, which, at some point, has to stop.
I'm glad that you watched the film and that it engaged you to think deeper on the issues.
You seem to not be aware that the UK developed it's own psychological theories; without a research basis, ignoring the biomedical research; that ME and CFS are false-illness beliefs and deconditioning. They co-opted the term CBT and instead of being a helpful method to adjust to living with a serious debilitating disease, they use it to mean telling patients not to believe that they are ill, to ignore their symptoms, to not read research or join support groups, and to exercise. GET, graded exercise, tells patients to exercise, ignoring symptoms, and to increase activity in a regular basis no matter the effect. For a disease where the cardinal symptom is post-exertional neuro-immune exhaustion, over-exertion causing multi-system harm, this is absurd and harmful. “The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane.”—Dr. Paul Cheney, CFS researcher and clinician (comment made at the Invest in ME conference in May 2010)
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