By David Tuller, DrPH
I’ve been totally out of commission for three weeks while recovering from bruised ribs sustained in a fall. I have devoted most of my time trying to find sitting and lying positions that did not cause excruciating pain. That part is over, and I’m slowly getting back to work and catching up on what’s been happening–not only in our domain of interest but in the larger world. Those events include, unfortunately, the summary execution of two Minneapolis residents by federal law enforcement officers occupying the city under orders from the fascist regime in Washington, D.C.
But getting back to our regular themes, I’m taking it a bit easy today by posting something written by someone else. Zoe Campbell, a longtime British patient, sent me this moving essay about living with severe ME for years and the enormous toll it has taken.
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Zoe Campbell’s Story
I started writing this, a few sentences a day, because I didn’t think it’d be long before I couldn’t type at all. I’ve had Severe ME for twenty-five years now: I can’t walk or get out of bed, I can’t sit up or speak or press the power button on my toothbrush, and I can’t even cry or rage or feel the full horror of my condition because the resulting exhaustion will make me worse. I probably shouldn’t feel that I have to explain the severity of my illness as though I’m at fault for not recovering, but I do. I would just like to explain the mechanics of the disease that can wreck a person’s life in this way.
First of all, the problem with fatigue in ME is not up front, in how much you can do in the first place. The problem is how much you can recover from. The disease is defined by exertion intolerance, which sounds like a euphemism for laziness, but in fact it means that your body doesn’t respond to exertion in the normal biological way and you don’t recover properly from even trivial effort. It’s not the presence of fatigue that disables me: it’s the absence of energy. I want to do stuff, but, as Byron put it, the sword outwears the sheath.
So let’s say you put me at the bottom of a flight of stairs. (Let’s say this is ten years ago when I could still walk.) It’s not that I’d feel already drained, or feeble, or in a deep fug of lethargy that prevented me from summoning up the will to move. The problem is that after I get to the top of the stairs I’ll be spent, there’ll be an onslaught of disabling symptoms – “fatigue” is a little effete for my taste – and my stamina during this acute period will become exponentially smaller, so that tiny things which would normally be within my powers will now take further huge chunks out of me. And unlike the tiredness that healthy people feel after exercise, it isn’t the short-term effect of a process that is making you stronger.
This catastrophic response to exertion is usually known as post-exertional “malaise” (PEM), as though patients are feeling kind of languidly unwell like Baudelaire on a fainting couch, but that doesn’t really capture it. For me it’s a ghastly sensation as though my muscles are being burned up by acid or poisoned, peeled, perished, fuzzed or suffocated, on a microscopic level, but it doesn’t usually stop me wanting to fidget instead of rest. It can last days, weeks, or, for some people, months.
Researchers have for some time now been corroborating patients’ reports that trying to improve this problem the way you would with someone who was simply unfit and deconditioned, i.e. by carefully challenging yourself with activity, does not work and makes it worse. This is a problem because many doctors believe inactivity to be a cause of ME rather than an effect, and so we end up with “treatments” which make sense for people who don’t exercise, but which are useless or harmful to people who can’t exercise.
Far from being a sloth’s charter or the refuge of an “exercise phobia”, it’s actually extremely frustrating: how would you feel if effort was counterproductive to improvement and you couldn’t do anything you wanted to do? Most of us kick against our limits and do more than is good for us. And like most people with ME, I find that if I breach my limits too severely I can’t just slough off the PEM and leave it behind. My energy budget becomes even tighter, and therefore even easier to breach, and once my ceiling has ratcheted down in this way it doesn’t go back up again and I can’t make it.
And I know that many people, including many doctors, find it very difficult to believe in the idea of exertion from which you don’t recover. Whenever I’d cite X or Y event as evidence of this phenomenon, my (doctor) dad would say, “But that was a year ago!”, or two years, or three years, and so on through the turtlebacks of infinity, as though that did anything other than illustrate my point. When I warned him that something would be too much for me, he’d say, “Well you’ll just have to try.” I hope I’ve done enough to explain that trying is beside the point. I can choose to exceed my limits, but I can’t choose to recover from exceeding them, and telling me to try is like telling a diabetic who’s being forced to eat a box of fudge to “try” not to become hyperglycaemic.
And I get that all this probably seems weird to you. It’s weird to see people keep avoiding things that they seem to you to be able do. It seems weird to the Department of Work and Pensions, which decides that claimants are well enough to cook for themselves every day after it sees them go downstairs once, ignoring the fact that they’ll take more than 24 hours to recover from it. It seems weird to a lot of doctors because yes, the idea of exercise making someone less fit seems straight out of Bizarro world, and I can understand why at first glance – at first glance – they might think the patient is being irrational. But the study of disease is, after all, the study of the body not working the way it’s supposed to work. Why would energy metabolism be exempt from that?
It used to seem weird to me too. People are very much getting the wrong end of the stick when they think that ME patients reject psychological or behavioural interventions because we’re desperately craving the validation of a “real” illness. By far the easiest way out of this would be if I were stuck in a neuropsychiatric delusion that I could unstick with rational thought, a reformed attitude and/or careful adjustment of my boundaries. I’ve tried psychiatry, psychotherapy, occupational therapy, cognitive behavioural therapy, graded activity aka “exercise therapy”, “sleep hygiene”, “amygdala retraining”, “dynamic neural retraining”, every possible relaxation method and a partridge in a pear tree, willingly, on my own initiative and with my own money, over and over again, despite none of them having made even the ghost of a difference to my illness, because I was desperate and there was nothing else out there. I was even willing to believe in some of them. So I don’t criticise the psychologisation of ME because I feel stigmatised by mental illness; I criticise it because it doesn’t fit the facts and the treatments based upon it don’t work.
It’s true that the psychiatrists who hijacked this friendless disease decades ago weren’t using psychiatry to claim that ME isn’t “real”. They were, on the contrary, using ME to try and emphasise that psychiatry is real – “Look how properly actually sick your delusions have made you!” They’ve filled the gulfs in their knowledge with ideology instead of evidence, and they respond to valid criticism with (increasingly desperate) parades of intellectual and moral bankruptcy. Their folly has inflicted appalling misunderstanding and mistreatment, for decades now, on hundreds of thousands of people – and that’s not even counting Long Covid. But they were allowed to make us their playthings in this way by a medical establishment that simply doesn’t want to bother with ME. Progress in understanding this disease is slowly being made now, but it’s being made by doctors who started by believing their patients. I don’t think that’s a coincidence; I think it’s vital.
And this is the final thing I want to say. For me as a very badly affected ME patient, my quality of life is terrible and medical understanding is extremely sketchy, and these are misfortunes. But the lack of even the will to understand it among people whose job it is to do so is more traumatic and it is culpable. I much prefer the doctors who admit they don’t know what to do because nobody really does yet, but who want to understand, and don’t start by presuming I’m an unreliable witness, and don’t think that branding me delusional is preferable to admitting they don’t know. Nothing I’ve said here is new. It’s not distinctive, it’s not particularly insightful and it shouldn’t be controversial, it’s just bog-standard first-hand knowledge of an illness which I don’t fully understand and nobody else does either. I would like to be listened to, please, by people whose job it is to listen to me, and to be believed unless there’s good reason not to.