Tuesday, February 09, 2010

More on managing ME, and Dr Ben Goldacre on systematic reviews

I knew that my previous blog post would upset people. After years of trying to convince doctors, the Benefits Agency, the Daily Mail, Uncle Tom Cobley and All, that ME (or whatever you want to call it) is a real physical illness and not a form of hypochondria, it's understandable that some ME patients should be a bit touchy about the subject. So, just in case you didn't get it last time, I didn't say that ME isn't real, or that severe sufferers are all malingerers. According to Dr Charles Shepherd's definitions, I fall into the "severe" category, but since definitions of ME are so muddled and confusing, I'm beginning to wonder if there is such a thing; practically everyone I know who's been told that they have it, or thinks that they have, has a different set of symptoms. It seems to have become a convenient way to define a whole bunch of illnesses we know very little about. Take myalgia (the M part of ME) for example; myalgia means pain in a muscle or group of muscles. Some people with "ME" have myalgia, some don't. I have aches and pains from time to time, apart from the pain of arthritis, but I couldn't say they had anything to do with ME; it's about 22 years since I was diagnosed, so I don't remember whether they decided that there's anything wrong with my muscles, apart from flabbiness.

Those who do have a lot of pain shouldn't rely on morphine long-term, as Lynn Gilderdale seems to have done. It's an opiate, it's addictive, and is soon tolerated so that it becomes less effective and the dose has to be increased. It also causes constipation, which is likely to be a problem if you're not moving much anyway. Codeine, which can be used in combination with paracetamol, is also an opiate, and can also cause constipation. Paracetamol can cause liver damage in heavy doses - I've conducted a funeral for a young woman who took an overdose and didn't tell anyone for two days, by which time the damage was irreversible; she died two weeks later. I've used codeine and still do, from time to time, but I'm very wary about using it a lot, since it's addictive. I have pain from the arthritis in my spine but have hardly needed to use chemical pain-relief since I've learned pain-management techniques, partly from my physiotherapist and partly from a pain management course. Knowing what tends to exacerbate the pain is helpful. The other important things are movement (to avoid stiffness and spasm), distraction techniques (learning to take your mind off the pain, in similar ways to the de-sensitising to sound I mentioned earlier), and various therapies, such as applying heat. I'm still in pain - always will be - but I can live with it.

One of the causes of weakness in ME appears to be mitochondrial damage, which inhibits the body's ability to convert energy. This explains the delay in reaction to exercise; on a good day, you might feel well enough to go shopping or carry on gardening for longer than you know is good for you, only to find that you slump into achey exhaustion a day or two later, for days at a time. Been there, done that, got the T-shirt. The answer isn't to avoid any exercise, but to know your limits.

In my last post I suggested that something might have gone wrong with the way that Lynn Gilderdale's condition was managed, so that she deteriorated into a brittle-boned, physically spent young women with a very old body, and then persuaded her attentive, caring mother Kay that she should help her to commit suicide. This drew indignant comments from a couple of people who took the suggestion personally, as they clearly identified with Lynn Gilderdale. That's the trouble with trying to talk objectively about ME and its consequences. There are two extremes; on one side, those who deny that there's any such thing (it's psychosomatic/depression/hysteria); on the other side, those who get very upset at the merest suggestion that we might question the science, the management methods, or whatever, because they imagine you're questioning their experience. Well, I suppose they'd be right. I am questioning the experience of some people with ME, specifically people like Lynn Gilderdale, and I am questioning the ways that some people manage their ME, because I think they might make things worse for themselves.

One of the things that I find depressing about ME is the victim mentality of so many of those affected by it. Some teenage girls in the developed world (those in developing countries have other things to worry about) do seem to exploit problems, like eating disorders, to attract a lot of attention to themselves. If they also have a physical illness, do they get perverse satisfaction from this, by using it to justify their attention-seeking? The statistics show a gender inbalance. Boys' problems are more likely to manifest themselves in violence, often towards themselves.

So, before the touchy squad start shouting abuse at me again, I'm saying that having a teenage psychological disorder about something like body image, diet, self-obsession of various sorts, plus an illness that physically restricts normal behaviour, is a recipe for trouble. Just as a teenager with anorexia can be amazingly resistant to any efforts to change her behaviour and eat sensibly, so might a teenager with ME resist any attempts to change the management of her condition, by exploiting her parents' concern and sympathy.

After I wrote the last post, I read an article in the Guardian by Emily Levick, who corresponded with Lynn Gilderdale online. Several things struck me about her account of her illness:
"I slept well into the afternoon and was wide awake all night."
Yes, I know a bit about that. I've stayed awake late at night, and then slept very late next day. We do need more sleep than most people, but we need to sleep at night, when the body tells us that we should be asleep. Re-educating the body involves waking up at a reasonable time, using an alarm clock if necessary, and staying awake. An afternoon nap is fine, but not so long that you can't get to sleep at bedtime. It's all about adjusting your internal clock. It's more difficult to maintain a normal sleep pattern when you can't exercise, because exercise naturally makes you physically tired. When you feel tired all the time, night will blur into day. Disturbed sleeping patterns are also common with depression - depressed people sleep longer. It's natural to feel depressed about being ill, but it can become a vicious circle.
"All day, every day, I lay in bed..."
Why? The more you lie in bed, the weaker you'll get. Moving around, even a little, helps to prevent the serious problems that result from inactivity. Anonymous, who commented on my last post, said that exercise makes ME worse. Not true. A total avoidance of any movement (which counts as exercise) makes ME worse. Use a wheelchair, lie on the sofa, practice some stretching exercises, but don't stay in bed for long periods. Eventually, you won't be able to get up, not because of the ME, but because your muscles have atrophied through lack of use.
"I could not cope with visitors, even if I didn't see them - just the knowledge that there was someone in the house (other than my parents) was too exhausting to contemplate."
The knowledge that there was someone in the house? You're telling me that that was due to the ME? Please!
"My curtains remained closed all day to keep out the daylight..."
Sensitivity to light can be be a problem with many conditions, including migraine, but persistently avoiding daylight can lead to serious physical problems because the body needs it to be able to absorb vitamin D. Without it, you lose bone density (one of Lynn Gilderdale's problems) and develop a variety of other problems. Women who wear the burka develop serious health problems because of vitamin D deficiency and their children may have rickets, a completely avoidable condition.

Instead of staying in a darkened room, it's better to wear sunglasses or filters over normal spectacles. The wrap-around kind, favoured by Bono, way make you look like a dork, but they keep out light from the sides as well as the front. I wear them when I need to because I have macular degeneration, an eye condition that causes sensitivity to light.

Anyone who's too ill to go outside without help might be carried or pushed outside on fine days.
"... any sound had to be quiet, and any activity (such as my mum reading a page or two of a book to me) could last no more than a few minutes..."
Sensory sensitivity can become exaggerated for psychological reasons. Anyone who's conscious of an annoying noise, for example, may become so fixated on it that they notice it when hardly anyone else does. Two examples...

I live within a couple of miles of an air base; so does my friend Ron (he's actually further away than me). The air-sea rescue helicopters are based there, and they often fly overhead. Ron hears them several minutes before his wife does, or anyone else, for that matter, and has been writing letters of complaint about them to the base because he says they ruin his enjoyment of his garden. He's tuned in to the sound they make, so that he anticipates it even before it gets close enough to bother most people.

A friend who works for a local authority recalls receiving frequent letters and phone calls from a tenant who complained about a noise nuisance in his block of flats. He took special equipment out to the flats, several times, and couldn't detect anything. It turned out that what the tenant heard, and was highly tuned into, was slight hisses and clunks in the pipework that fed the central heating system from the communal boiler. No one else noticed it, and no one complained, but because the tenant had become obsessed by it, he did.

It is possible to treat extreme sensitivity like this psychologically, such as by hypnosis. When dogs become hyper-sensitive to sounds, like any sort of bangs, after being frightened by fireworks, they're treated by gradually getting them used to sudden noises in stages, from quiet to noisy, until they build up a tolerance.

With all these sort of things, the answer needn't be avoidance, but adjustment.
... the amount of food I could eat in one go could fit easily into an egg cup...
The stomach shrinks if you don't eat much. The answer is to eat small amounts of nutritious food more frequently and gradually increase the amount. The gag reflex, common in anorexia patients, is self-induced in anticipation of doing something you don't want to do. You can observe the same thing in very young children who are allowed to develop food fads. If strong flavours or smells are off-putting, start with bland food and drink and gradually introduce more flavour. Again, small children raised on bland diets tend to develop very conservative tastes. Their palates haven't been educated.

I doubt that I'll be writing any more about this for now. I'd rather use my limited energy resources on other things, unrelated to illness. I hope we won't hear any more sad stories like Lynn Gilderdale's. We might not, if more people with ME and their carers were taught coping strategies that avoid making a bad situation worse.

Oh, as for the fuss about the XMRV research (mentioned in the comments on my last post) - maybe caution is called for. Dr Ben Goldacre (who's questioned the "alternative therapies" offered at the private Breakspear Hospital in Hemel Hempstead, where they "treat" ME) has spoken about "the startlingly new idea of systematic reviews" on BBC radio. We could do with a few of these before ME patients get excited about the next "cure" announcement.

I'm going for a lie down. If you see any spelling or other errors here, let me know and I'll sort them out later.

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