Damian Thompson has recently used the Daily Telegraph to highlight the difference between blogging and journalism.
“… medical science has no great difficulty explaining what’s wrong with most people diagnosed, or self-diagnosed, with ME. Their brains create a debilitating fatigue and pain that often correlates with certain personality traits. For example, there’s an overlap between ME and eating disorders.”
I habitually avoid reading editorial pieces about ME/CFS by people who have no expertise in the condition, and this entirely poisonous and ignorant piece from the pen of a man whose specialist subject is religion, not medicine, is a very good example of why.
“This is a tricky subject for me, because a colleague has been diagnosed with ME. He’s seriously ill: the breakdown of one part of his body after another cannot be explained by psychosomatic fatigue. On the other hand, I suspect that his condition has only been described as ME because doctors haven’t pinned down what’s going on.”
Yes, Damian. What you have just described is ME/CFS. Your friend has been diagnosed with it because he has the same thing the rest of us, who have also been diagnosed with ME/CFS, have.
That is what it is like. Nothing works. Your muscles don’t work. Your blood pressure doesn’t work. Your guts don’t work. Your immune system doesn’t work – or it is in hyperdrive and trying to eat you. Your eyes don’t work. Your ears don’t work. Your brain doesn’t work. Your hair falls out sometimes in handfuls. Your skin comes off, sometimes. Your muscles shrink as your body cuts back absolutely everything it might have to use energy to maintain. I piss blood pretty regularly, but since it’s not the sort of thing you drop into polite conversation I have no idea whether this is common. And you are in a lot of pain.
The whole point of ME/CFS is that “doctors haven’t pinned down what’s going on.” A diagnosis of ME/CFS means, very precisely: “We see this list of common symptoms in some people. We don’t know why.” The name for that list of symptoms is ME/CFS.
In order to get a diagnosis of ME/CFS you will have been subjected to a battery of tests over a long period. It is not unusual for people to wait for years for a diagnosis. Every standard test will have been run, and will have come back somewhere in or near the “normal” range. Thyroid, diabetes, liver function – if you get a half decent doctor they might do a full adrenal function run-up on you. I’ve been for ECGs (which came back odd, but not odd enough to warrant any action). The only thing that has ever come back as unusual from all the blood tests was “signs of a massive recent viral infection”, with broken and damaged blood cells. But that isn’t consistently the case and only appears after a massive flare-up. Nobody knows what it means. Nobody knows whether the virus in question is Epstein-Barr, or whether the Epstein-Barr flares because of some underlying other condition.
Welcome to the reality of life for anyone who suffers from this condition. There is no cure. The prognosis isn’t good. There is no palliative medicine, though many sufferers, with their spirits crushed flat by the brokenness of their bodies, their future wrecked, their ability to work or do anything which engenders self-esteem apparently ended, unable to maintain their relationships with family and friends, and usually in pain, DO take anti-depressants. I don’t myself, but I have every sympathy for anyone who does. This condition is a kind of hell.
If you scale your life back so you’re doing virtually nothing, you can pass for “healthy-looking” on the one occasion every couple of months when you manage to totter out and see someone. But that one trip out will likely cost you a fortnight or more of not being able to do anything. When I say “anything”, I include things like “wash your own hair”, “cook food” or “properly digest food”.
The World Health Organisation classifies ME/CFS as a neurological disorder in the ICD-10, under Diseases of the Nervous System, just like Multiple Sclerosis and Epilepsy. The classification code for ME/CFS is G93.3.
It’s worth pointing out that both Multiple Sclerosis and epilepsy used to be classified as “hysterical” illnesses, back when we were ignorant about the physical causes of the symptoms. So did stomach ulcers, until it was discovered that stomach ulcers are caused by a simple bacterium. So did Porphyria. In fact the human race has a long and colourful history of classifying anything it does not yet understand as “madness” or “lies”, on the bizarre basis that illness is somehow a disorder of the soul or the will.
Well, we need to move the fuck away from that kind of pomo-witch-doctor thinking. A more lazy and self-indulgent response to people being ill is hard to imagine. Yet we see it indulged time and again in the press.
In the UK, the definition of ME/CFS was presided over by a psychiatrist named Simon Wessely, who made it his life’s work to define ME/CFS as a psychiatric illness. That’s psychiatric, not neurological.
The definition of our condition hinges on this point:
From the excellent Scot.ME:
There are over 1,000 institutions around the world designated as Collaborating Centres, the Institute of Psychiatry, London is one of them. These Collaborating Centres are allowed to make adaptations to WHO publications but have absolutely no authority to alter/modify classifications.”
“In October 2001 it was discovered that CFS/ME had been ‘unofficially’ reclassified as a mental disorder in a U.K adaptation of a WHO publication, the ‘WHO Guide to Mental Health in Primary Care’, developed by the Collaborating Centre of the Institute of Psychiatry, London. It was included under the classification F48.0 relating to mental, behavioural and neurotic disorders (neurasthenia).
“Despite numerous complaints being made to the Collaborating Centre of the Institute of Psychiatry, and ICD-10 classifications being mandatory in the UK, sales of the book were allowed to continue unabated for years until almost all 30,000 copies had been sold. Then and only then was an erratum slip issued. This misclassification also led to CFS/ME being wrongly classified as a mental disorder in the NHS Mental Health Data Manual. It is noteworthy that CFS/ME has once again been included in the 2nd edition of the ‘Guide’. However, the title of the book has been (conveniently) altered to include both mental and neurological disorders, and a few neurological disorders added.”
There was an obvious benefit to Wessely in doing this (who doesn’t want to be a country’s “pre-eminent expert” in something?); but the therapies he prescribed – Cognitive Behavioural Therapy (CBT) and the dreaded “GET”, or Graded Exercise Therapy – have caused a lot of patients more problems than they cured. GET has a dreadful reputation among ME sufferers, as it demands that the sufferer does precisely what they are unequipped to do – exercise. This approach has pushed many people from a workable, but very limited “norm”, back into full relapse.
I am assessed once or twice a year myself, by GPs who do not know me and are often not expert in treating ME/CFS. My worst nightmare is encountering a GP who has had no hands-on experience with ME patients, because they always toe the Wessely line, and insist on GET. Which I know puts me in relapse, because I faithfully tried it for the first three years I was housebound with this condition, and spent the entire time yo-yoing in and out of relapses. Yet I kept trying. I am not unusual in this. People with ME will try anything that might help them get better. We are – and I make no apology for this – desperate to get our lives back. All of us.
Wessely is pretty much a hate figure among ME sufferers. His work may have been well intentioned, but what it has done is slap a huge mental health stigma on a condition which is unquestionably physical – Thompson’s article underlines this point. The friend he KNOWS who has ME – he is properly ill. The rest of us, whom Thompson does not know, are malingering nutcases.
Thompson’s view IS the public view, on this condition. In fact, we’re all suffering the same thing Thompson’s poor colleague is suffering.
This is the legacy Wessely has left us with.
There’s more to the anger: the fact that this condition is largely thought of as a psychiatric problem, both among the public and by GPs, has knock-on effects.
Firstly, there isn’t very much research into the physical symptoms. Where there is research and another theoretical cause is disproven, there is always a rash of editorial pieces taking (often with glee), the line that this effectively proves that people with ME are malingerers. This, and the desperate need people suffering from this condition have for there to be an answer, is why articles about ME are often met with vitriol from campaigners. Those articles are telling people who have no hope, that they still have no hope. It’s pretty soul-destroying, when it’s your life being written about in those terms. Some people react angrily to the news.
Secondly, many of us end up seeing GPs who have swallowed the UK definition hook, line and sinker, and who recommend courses of useless CBT and damaging GET for us.
Thirdly, our own friends and families often write off our physical suffering as something which, if we pulled ourselves together, would simply stop. As a choice. As something annoying we are doing to them. I don’t know anyone with ME who hasn’t lost most of their friends as a direct consequence. (Although the ones who stay are priceless, the best, the very best of humanity.)
So the fact that there’s a very vocal, bitter element in the ME/CFS community when it comes to poor journalism should come as no surprise. All those things we cannot do, you can do: you are free. You can walk about, eat what you like, you can have a love-life, you can pick up your children or go for a jog. You can go on holiday. You can take up a new hobby. You can read a book. And you can work. You are paid for your work. And what you choose to do for that money is further stigmatise us, for whom all those doors are firmly closed?
You bet we’re angry.
 Hardly surprising when you actually read what the man has said and written about ME/CFS sufferers: “Most CFS patients fulfil diagnostic criteria for psychiatric disorder. Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. …. Do any of these symptoms possess diagnostic significance? The answer is basically negative… The description given by a leading gastro-enterologist at the Mayo clinic remains accurate. ‘the average doctor will see they are neurotic and he will often be disgusted with them.'” – Wessely S: “Chronic fatigue and myalgia syndromes”, in N. Sartorius et al (eds), ‘Psychological Disorders in General Medical Settings’, publ. Hogrefe & Huber, 1990.