Friday, May 10, 2013


The Sunday Times in Britain published a story last week about ME. It was a long piece in the magazine.

The main point of the article was that some scientists and psychiatrists who promote the "ME as a psychological illness" agenda were being harassed and threatened by ME activists.

The writer, Michael Hanlon, explored the controversy around CFS/ME. The central question is whether it is a physiological illness with a physical cause, as ME activists claim, or whether the condition is a psychiatric one, with the cause to be found in the mind, as some psychiatrists believe.

Seemingly, some of the latter group have been threatened and verbally abused after explaining their positions.

The writer does offer some element of balance, suggesting that perhaps the ME activists have a point, that there is more to the illness than simple psychology, but in general he comes down on the side of the "ME is all in the mind" school. In fact, he doesn't talk to anyone about the physical evidence for the fact that it is much more than just a mental disorder.

The story is horrifying in more ways than one. Firstly, the idea that people would ring up scientists to threaten them is bizarre and worrying. Some scientists are reported to have security.

And in truth the talk about "the extremists" didn't really surprise me. I have been floating around internet forums on ME for about five or six years now, and I have come across a lot of the intolerance from the hard-core activists. There is something religious about them, as is mentioned in the article, a complete inability to accept the idea of any programme of exercise or psychological support to be useful in treating ME.

There is a fundamentalism about them that is worrying. The fact is that CFS/ME is a mystery, and is in all likelihood not just one condition. There are many different symptoms, and a range of likely causes, and so any group that wants to dictate what can and cannot be tried is not helping sufferers.

In fact at the beginning of my condition I did a course of graded exercise, which did help me get out of the hole that I was in initially. It was not a cure, but it was a help in getting me out of a bad spiral of oversleeping and under-activity that I had gotten into.

I have also had a form of Cognitive Behavioural Therapy (CBT). Again it was when I was at a low point, and helped me cope, and to come out of a dark place that I was in.

So these approaches can help some people. I suggested this on a forum a couple of times, and some of the extreme responses that I received were surprising, to say the least. There is a tendency among some sufferers to believe that their form of the illness is the only one, and they react badly to any idea that psychological support or graded activity can be of help.

Yet the truth is that these slightly intolerant sufferers are in the minority. And one of the main problems with the article is of course that the writer gives the impression that extreme and irrational responses to disagreement is par for the course. After reading the article it would be easy to suppose, for someone who didn't know anyone with CFS, that we were all a bunch of crackpots, deluded and willing to react violently against anyone who disrespected us.

In fact, though, Hanlon's own figures show how tiny the number of problematic figures in the ME community in the UK is. He quoted an estimate of fifty extreme activists. That's fifty out of an estimated 100,000 people with CFS. That is literally 0.05%. A drop in the ocean. Because of five ten thousandths of our number, we are all branded as lunatics who have some kind of desperate need to be considered ill.

Michael Hanlon, the writer of the piece, uses words like "harassment," "bizarre", "intimidation" and "vitriol" to describe both the debate and the response to it by some ME activists.

He says that " there was outrage from the "community"" when Professor Blakemore decided that a majority of funding for ME research would be put into researching psychological causes. Well of course there was "outrage". Outrage is a rational and normal response to a decision and a policy that you find outrageous.

Hanlon doesn't seem to get it, or even want to get it. The anger from the direction of people with CFS is completely understandable. The last line in the piece is about the extremity of the anger, and the heated nature of the debate. He says " Perhaps someone should be brave enough to try to research its cause."

Well the cause is not exactly a mystery. Anger is a totally normal response when you are confronted with a medical establishment which is bent on twiddling its thumbs while you are doing everything in your power to find some relief from a condition that has destroyed your life.

Hanlon tries to make out that the fact of us being angry is proof of how irrational and unbalanced we are. 

Well anger is an absolutely human response when you are being told that to recover from this life-destroying illness all you need is to change the way you think, and to do an exercise programme. It is natural when findings of physical abnormalities in ME patients are completely ignored, and when the evidence of people being made much worse by exercise is disregarded as irrelevant.

The basic mistake that Michael Hanlon makes in his piece is this. Sufferers of ME and CFS are not, as he seems to think, worried about the shame or stigma of having a psychological condition. We are not worried about what people will think if they discover that our illness is mental.

The reason that this is so damaging is that is stops us getting better. If we are treated as having a psychological condition, when we don't in fact have one, then we are not going to improve.

We want to get better. And when the medical establishment misunderstands the nature of the illness so profoundly, then this ultimate goal, a full, healthy life, becomes almost impossible. That's the key to the anger, it's not difficult to understand.

I have had graded exercise and CBT, the treatments proposed by the psychiatric lobby. They both helped a little in their time, but were not a cure. I still have chronic fatigue syndrome, my life is still limited and a struggle, even after their recommended approach. I don't think it is unreasonable of me to be angry at this fact, and to want the situation to change.

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