M.E. : The Invisible Disease
May the 12th is National ME Awareness Day, Hersham based writer and musician Christopher Ritchie talks about his experiences as a sufferer of this terribly misunderstood illness
‘You’re imagining it’.
Three words distilled into one crushing, condescending blow: ‘supratentorial’. You could look it up but I’ll save you the bother as I remember very well returning home after a doctor told me I should really stop going to see him – enough was enough.
It’s a pretty clever though absolutely insulting word when taken in this context. The tentorium is a membrane situated just below the brain, so supratentorial, in the jargonistic sense, refers to the brain: it’s all in your mind.
Unfortunately, this has been largely the stock response of doctors in the UK to people who suffer from M.E., a disease perhaps so complex in nature that rather than entertain the concept of it being a real physical condition the medical profession has followed the guidance of a group of psychiatrists and psychologists to classify it as a form of mental illness. Now we’re all a bit crazy anyway, aren’t we, but something like this is, as any sufferer will tell you, extremely physical.
Myalgic encephalomyelitis, but it’s probably more helpful to explain what it ‘does’. Think about having flu all the time. Consider waking up after a full night’s sleep and feeling as if you haven’t slept at all. Double the gravitational force on your body so just getting out of bed is a massive task. Stick a permanent headache in the mix, along with constant aches and pains, memory problems, dizziness and confusion… and then top it all off with that word again: supratentorial – you’re just imagining it! It’s a kick in the teeth for people who are already down.
M.E. is, to most, an invisible illness, which is probably why doctors have struggled to accept it. It has an unusual pathway to diagnosis – run lots of tests and fail to find anything wrong, so it’s really the only thing that’s left. That failure to find any biological cause proves it’s imagined, right? And that leads to a diagnosis of Chronic Fatigue Syndrome, a catch-all categorisation which effectively tells the world you have some kind of acquired laziness.
Well, it took me three years to get my diagnosis and a referral to a specialist clinic which clearly my doctors treated with mild, aloof contempt. Three years of uncertainty, rapidly declining well-being and a massive strain on a young marriage.
Six years after having seen a specialist it’s a very different landscape globally but it seems the UK is playing catch-up. A group of researchers in Norway found that Rituximab, a cancer drug, had very positive results on M.E. patients. The Norwegian government reclassified M.E. as an auto-immune illness and sanctioned further research. Soon other governments did the same. US President Obama personally ordered research in his domain. A wave of news stories and profiles of sufferers hit the UK media, revisiting the condition in a new light. All of a sudden we had hope. Just as multiple sclerosis (M.S.) had been considered psychological but then gained acceptance, M.E. at last had its veil lifted.
Those who would take the view of it as mental illness have seemed to consider M.E. a form of depression, and one which sufferers are reluctant to emerge from (wallowing in self-pity), but as any sufferer will tell you depression is simply an inevitable side-effect of the isolation and anxiety that builds up when there’s no light at the end of the tunnel. I’ve been to meetings where they certainly are wallowing, but I’ve also spent time with people who are determined never to do that.
It’s also a condition, like any other, of varying severity. Many sufferers learn to manage it and can work, do gentle exercise and lead fairly normal lives; at the other end of the scale are those whose lives are reduced to very little, trapped in bed and hardly ‘there’ at all. In the worst cases people have died as a result of M.E. After all, with such a range of symptoms and manifestations other more sinister conditions could be masked, and when doctors aren’t interested…
But now, at last, people are waking up to it. The NHS estimates that around 250,000 suffer in the UK, the majority being adult women but men (yep, that’s me) and children are affected too. It’s not infectious but researchers have long believed that it’s a post-viral condition. Now scientists believe they have uncovered biological markers too, and this is thanks to on-going research by various organisations and helped enormously by the Norwegian breakthrough.
So if you think you have M.E., what should you do? Firstly find a doctor who understands the condition and seek a referral to someone who can give you a definitive diagnosis. There is no treatment regime (beyond what many are offered – anti-depressants) but you need to bolster your immune system wherever possible. Probiotics, vitamin supplements and other things can help (especially D3, the ‘sunshine vitamin’, as when you spend a lot of time lying in bed you’ll become seriously deficient in that).
Next have a look online for support groups. I found the Kingston and Richmond group very helpful – people suffering just like me. Just talking to people in the same boat can make a big positive impact – psychologically.
There are loads of ‘alternative’ treatments that practitioners claim varying degrees of success with. I’ve tried acupuncture, homoeopathy, the Bowen technique, graded exercise, osteopathy and cranial osteopathy… and only the last two of those made any difference I could actually feel. More useful was treatment for anxiety, which I believe was responsible for amplifying my symptoms so much. With anxiety all but gone, I can manage my condition much more easily, but the underlying problem, whatever that may be, is still there.
I spend at least half of the year housebound, not unwilling but simply unable to leave. Invitations and events come and go and generally I’m lucky to get to any of them. Things are a little easier in the summertime, for a reason I don’t understand and no doctor has been able to tell me. I try to get enough exercise to tide me over for the next winter, where I’m lucky to leave the house once or twice a week, but everything is still a tremendous effort. And my own level of suffering only ranges from mild to moderate; imagine what it’s like for those who are permanently bed-bound – the isolation, the uncertainty, the pain… and believe me, that pain is relentless.
I’ve had a headache for nine years. At all times. Painkillers don’t touch it. Most sufferers are hypersensitive to aural and visual stimuli, so a trip to the cinema or a concert is a gamble (even just being out in a shopping centre or a pub can be debilitating). Some sufferers are hypersensitive to smells and tastes; others develop allergies one day that disappear the next. The uncertainty of M.E. and the anxiety that builds make it exceedingly unpleasant.
There’s a narrow beam of light at the end of the tunnel. Research that isn’t just probing but is targeted is under way and it could be just a year or so when a breakthrough is made and a drug can be licensed for treatment. A number of organisations have been tirelessly campaigning for years, so awareness is generally better these days, at least among the public if not the medical institutions. Indeed, the last three doctors I told about my condition stared back blankly. It’s just not on their agenda, although that is changing – slowly.
In the meantime, the best we’ll get – and what we really need – is understanding from our friends and families. It’s not sympathy we’re after; when you have to explain for the hundredth time that you can’t do something and everyone rolls their eyes, it’s a slap in the face.
I’d give anything to get back to how I was before, but that is all out of my hands. And I’m definitely not imagining it.
For more information or support for sufferers, see: