Dangers of Fad Treatments

by Del Kennedy

It is all too common to hear stories of desperate sufferers trying anything, no matter how bizarre or unlikely, in search of something that will make their lives bearable. And there are all too many practitioners ready to peddle nonsense if it makes them a good living.

At best, these 'treatments' do nothing at all. At worst, they can do a great deal of harm. I'm sure you will have recognised by now what I'm talking about : 'physicians' pushing quack 'therapies' like Graded Excercise and Cognitive Behaviour Therapy.

Just take a look at the kind of hocus-pocus that these people are selling :

(A Closer Look At Cognitive Behaviour Therapy,
by Stephanie C. Jones, October 1999)

There are several words for this, and the politest one is twaddle. In order to interact with others, one has to be capable of focussing one's mind on their words, expressions and body-language. Most of the time, it is nigh on impossible for an M.E. sufferer to bring his or her mind into focus at all. Consciousness remains somewhere between sleep and wakefulness. When it is possible to focus attention, it is very limited both in scope and in duration. At the best of times, it may be possible to think about one subject, but to switch attention between different things is impossibly confusing, and leads to rapid brain-fag.

The sort of thought sufferers might manage is linear, erratic in speed, and short-lived. The sort of attention you need in social contexts is very different: you have to respond instantly to prompts from several sources or on several subjects while filtering out all the irrelevant stimuli from the environment. This is exactly what ME sufferers are worst at. If they can manage it at all, it's for half an hour before the fog rolls in again.

Unable to take the social stage and play their part in the world, ME sufferers face the virtual destruction of their social identities. This is a tormenting handicap in many people's lives, not something to be made light of. But Ms Jones treats ME in these terms :

Well, for a start, there's the fact that we are reading stuff like this - and secondly, there's the fact of where we are reading it; the article from which this excerpt is taken was published in issue 31 of 'Interaction', the journal of 'Action for ME and Chronic Fatigue' (October 1999). If we have to read stuff like this in the journal of what was originally an activist group, then clearly this nightmare could go on forever.

Diplomacy and Public Relations are one matter: getting this far off message is quite another. CBT does not need to be promoted to ME sufferers by AfME; it is marketed far more than enough by mainstream medics, usually in combination with 'graded excercise'. Then there's the fact that:

"mistreatment of ME sufferers can lead to deterioration and even paralysis".

"Facts and Figures on ME", AfME, 1993/4.

If you're an ME sufferer or a carer, then you will know just how serious this life-wrecking disease is - and how grave are the issues that it has raised concerning the practice of medicine in our society. If you're not, then read Melvin Ramsay's description of the disease on this website - or just read this:

"20% of sufferers are permanently disabled and wheelchair or bed bound. 60% never regain full health.

"Facts and Figures on ME", AfME, 1993/4.

It is difficult to see how an article that purports to address the treatment or management of such a disease in terms of telling its victims to think: "Oh, silly cat, it's jumped on the milk bottles again" could be interpreted in inoffensive terms. As Ann Crocker wrote in her letter published in the following issue of Interaction:

Personally, I find it very hard to understand why 'Action for ME and Chronic Fatigue' are prepared to even risk insulting ME sufferers and demoralising their carers in this way. They didn't start out like this. The ME Action Campaign was the first ME activist group in the world, and Claire Francis inspired us all with the strength and courage of her address in Issue 1 of Interaction (Winter 1988). Here are some excerpts from that landmark publication :

Whatever happenned to that spirit ?

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