Thursday, March 17, 2016

2: Unfit and afraid?

Generally psychiatrists avoid any discussion of what actually sets off ME in the first place, but a small core argue that the reason that the condition continues is purely psychological. A very small minority of people with ME take offence at this, thinking it is a way of trivialising the condition, but that would be wrong and unfair. Anyone with any experience of depression, or any other condition labelled as "mental illness", is only too aware of how devastating and difficult such conditions are. Sadly, many psychiatrists also confuse that wrong attitude, held by a very small minority, with the scientific scepticism of many others about the validity of their suggestions. Unfortunately, others in society, including much of the media and some doctors, have taken the opinions of those psychiatrists to mean that ME is relatively trivial, and is simply a result of a lack of will-power: I am not convinced that the psychiatrists who put forward these ideas have done enough to counter that misunderstanding.

One of the ideas held by this small group of psychiatrists is that it is our fear that is holding us back: they believe that for some reason we have a deep dread of pushing ourselves, and any natural aches and pains that would normally occur on the road to recovery, are taken as confirmation that we are still very ill. They argue that such an attitude can also make us more sensitive to such pains. Again, it is important to realise that this is not an attempt to judge us, any more than it would for people suffering from post-traumatic disorder.

Their other idea is simply that we are deconditioned: too unfit to do much without getting tired. Actually they are linked, because the first one implies that the fear itself would make us become deconditioned.

Of course, fear and deconditioning can be part of any illness. I'm sure if anyone went down with food poisoning after eating a dodgy kebab, fear might well be something that holds them back from repeating the experience: and, of course, many older folk lose their confidence if they start to fall over regularly. Anyone who is in bed with a vicious bug for a week or more will be a little deconditioned, and if someone has a broken leg, it will take a while to get back to normal. Some will have their confidence shaken: some will wonder if they are quite ready to get back to work.

But this is very, very different here: the argument is not that some sessions of CBT can help us adjust to ME, but that most or all of our symptoms are due purely to fear or deconditioning. They are not talking about the way that CBT can help some people cope with heart conditions, asthma, MS etc. They mean that the level of fear and deconditioning described must very severe and deep-rooted, in order to be the sole reason for our symptoms.

These two suggestions have been described as hypotheses, but that really rankles with me from a scientific point of view. When a scientist has an idea or a theory that fits the known facts, it doesn't command any respect until it can be tested by predicting something that is previously untested and that fits specifically with that theory.

Here's a silly example, just to explain what I mean. Suppose you have a little electronic number pad, and when you press 2 the answer 4 pops up. When you press 4 the answer 8 pops up. Pretty obviously it is just doubling the number you pressed. But I could come up with the suggestion that it takes 2 from the number, squares that, then adds 4 to it. They both give the same results, but doubling predicts that pressing 3 will give a 6, but my method would give a 5. So trying it with a 3 is a test that would show the difference between the suggestions.

That is, of course, a silly example, and is so easy to test, but think of scientists puzzling about climate change. They cannot perform experiments, so when they come up with ideas, they must find ways to show that their idea is a good one: they have to come up with something new to be measured that would distinguish their new idea from existing ones: something that clearly shows that they are on the right track. Anything worthy of being called a hypothesis must add something new to the understanding, and, most importantly, predict something that has yet to be tested that will confirm its unique ideas.

Now contrast that with these two "hypotheses" about ME. It could be argued that they add some deeper insight into the condition. But it is easy to speculate about what ME could be. I could offer a suggestion that ME is caused when some of the millions of neutrinos, that pass through our bodies every minute, hit and disturb processes within our cells: it is simply that some of us are more sensitive to these disturbances than others. Would you like to have a go producing one? What do you fancy? How about childhood abuse, stresses at work, chemical additives to chicken, electromagnetic radiation from the sun, visits by the tooth fairy, or imbalances of cosmic energies? None of these would deserve to be called hypotheses: they are just ideas. Some might be educated ideas, some random, and some downright weird, but that's all they are

So how have they tested the fear hypothesis? Getting people to fill in a questionnaire to measure their fear isn't going to impress anyone. Some people get confused and think that measuring whether CBT helps actually tests the hypothesis. It doesn't, for two good reasons. The first is that CBT does not only address fear, and there is no proof that it addresses fear efficiently: if CBT worked brilliantly for ME it would not confirm the fear factor, and if it was utterly ineffective it wouldn't disprove it either, any more than taking aspirin would.

It's not up to me to suggest a test, but I'll give it a go. I would expect that, if fear is such a major factor in ME, when people with ME suffer from another health problem it will show up very clearly in their recovery. Remember that we aren't talking about the apprehension many people feel after a really bad illness: we are talking about fear so strong that many patients become housebound: they lose contact with most of their friends, and are often shunned by their own families. So when, for example, 6 years ago I fell over and broke my hip, fear of putting weight back on it during the recovery process should have been a significant problem. (In case you are wondering, it wasn't. In fact the biggest problem was not beating people about the head with my crutches when they were being really sympathetic, trying to get them to understand that in comparison with ME, a broken hip was just a temporary inconvenience.)

What about deconditioning? Here the suggestion is that there is no difference between people with ME and people who are very deconditioned. Now obviously anyone who has been ill for a while becomes deconditioned. The important part about this suggestion is not that we are deconditioned, but that that is our only problem. Not only that, but this is the case for all patients caught by the Oxford Criteria for Chronic Fatigue Syndrome, which, in effect, means medically unexplained fatigue for 6 months or more.

There have been a large number of small studies over the years looking at muscles that have shown a variety of interesting and relevant results: if you try this link and click on "Documented muscle abnormalities" in the Contents page, it will give you a lot to look at. More recently, studies carried out with Julia Newton at Newcastle showed that, when exercised, the muscles of people with ME produce on average 20 times as much acid as healthy folk. This almost contradicts the supposition of deconditioning being the simple cause of fatigue, but a pedantic sort (like me) would say that strictly speaking patients with ME have to be compared, not with the healthy, but with those who really are deconditioned – with couch potatoes. To prove their point, perhaps supporters of this "deconditioning hypothesis" should demonstrate that people who are simply deconditioned display the same (inconsistent) range of abnormalities in these tests as people with ME. Now that would be an unexpected and untested prediction.

This is where the recent run of "2-day treadmill exercise" tests could come in but unfortunately these tests are hard to set up, and carry out consistently. What is more, they are normally matched with relatively healthy volunteers: I can imagine that it would be quite difficult to get some very deconditioned people to volunteer.

You could argue that if our only problem was deconditioning, then Graded Exercise Therapy should do the trick. That still doesn't satisfy my requirements though, because many studies fail to see whether patients are actually exercising more, or simply doing less of other things to fit in the required exercises. On the few occasions that pedometers were used to track patients, it was found that the overall level of activity didn't increase. But then, a large number of people with ME report that GET harmed them.

So there aren't any studies that actually confirm these suppositions, and, strictly speaking, there aren't any that prove they are false: but then surely the important question, before bothering to test whether they are true or false, is whether the suppositions actually match the facts. No scientist would waste her or his time testing something that didn't match known events. I would find it very hard to fit these suppositions to my situation. I went down with ME very abruptly after an infection in 1999. I changed virtually overnight from being able to cycle the 8 (very hilly) miles to work and back twice a week, to struggling to walk a couple of hundred metres to the staffroom.

But without a diagnosis, and with none of the standard tests showing any abnormalities, I had to carry on working for two-and-a-half years. It was terrible. Fortunately I was in a brilliant, supportive, and very concerned department. I am certainly not the only one who has been in that sort of situation. How could the assumption of fear or deconditioning be applied in cases like that? Could I become that deconditioned so quickly? Could I stay deconditioned for two-and-a-half years while still struggling to work? How could the concept of fear be applied here? If the explanations cannot fit the situations, then how can they even be worth considering?

These two suppositions certainly don't deserve to be called hypotheses, and that fact that some doctors choose to claim they are true simply indicate that these are, in fact, belief systems; belief systems that feed on people's bigotry. The fact that they don't even cover many circumstances make it even more of a "faith above reality" situation. What difference is there between doctors saying that they believe these to be true, based on their "clinical experience" then advocating treatment that, of course, helps pay their salary, and a preacher that assures you that he has talked with God and knows that He wants you to hand over your money to his particular church?

So the next time that a doctor suggests that deconditioning is your problem, and that CBT or GET would solve your problem, point out that you are an atheist, Buddhist, Methodist,... and that you do not subscribe to his particular form of unquestioning faith in the god-like wisdom of the medical hierarchy. Unless of course he can produce the hard evidence. In which case, please let me know and I will rewrite this blog (with apologies).