We keep hearing from "experts" who claim that their treatment is effective, and yet, when you dig further into it, there is no long-term follow-up. They are susceptible to the "Thank you very much, doctor: you have been really helpful, and I feel a lot better" syndrome, which seems particularly prevalent in England. I think we need a name for this, and propose PPS, the polite patient syndrome – a syndrome that medical professionals are particularly likely to fall for.
I do understand just how refreshing and helpful it is to come across medical professionals who have some real sympathy for and understanding of any chronic and misunderstood illness. My experience in hospital over the last year has hammered home just how rare this is, and how much relief there is when it happens.
But I keep coming across folk (not just with ME) who regularly go to the osteopath, homeopath, psychopath ... stating that the treatments are doing them good, and yet they don't improve. Their usual explanation is that without it they would be much worse. The truth is that we are built to leap to these sorts of conclusions, and it is hard to step back and be analytic. Most of our behaviour patterns are built on habit and assumptions. It is possible that sometimes these treatments are working: who knows?
There has to be some form of non-destructive objective assessment, and there has to be a reliable and comprehensive long-term follow-up. Without this, any claims of success are meaningless. Needless to say, there also has to be some sort of comparison group, but given the long time scales involved, I wonder whether each patient can effectively be his or her own comparison.
If we took a random group of folk with ME and tried out a treatment, we would have a group that had had ME for a wide range of time. A treatment that showed sustained objective improvement in all of them would suggest that spontaneous recovery was not a factor.
