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 :
"...perhaps you go out even less because your self-esteem is low or you do not see your friends so much because you have nothing to talk about."
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 :
However, if the automatic thought is "Oh, silly cat, it's jumped on the milk bottles again" your body will not undergo the same physiological changes it did when you thought it was a burglar.
Once you have identified a negative automatic thought, the next step is to challenge it. This can be done by asking yourself one of a number of questions specifically in relation to that thought. For example. you may think 'Life is going to go on forever like this', so you need to ask yourself 'What evidence do I have that this will happen?'
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:
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:
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:
"To impy that the physical illness ME can be successfully treated by 'challenging negative thoughts' is an insult to people like my daughter who have been severely affected by the illness for many years and yet still retain a positive and realistic attitude. My daughter's condition deteriorated to an alarming degree after following a CBT & graded excercise approach."
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 :
"Underlying this willingness of some members of the medical profession to dump you in the psychiatric dustbin is something very sinister. It is the belief that any illness with the slightest "mental" symptoms must be psychiatric in origin."
"If ever there was a case of the egg being put before the chicken, this is it."
"At the moment there is a polite but ruthless battle raging between the believers in M.E. as an organic disease (virologists and immunologists) and the psychiatrists."
"No campaign was ever easy, and ours is no exception. We face a long uphill struggle against ignorance and inertia. For most sufferers this struggle is utterly bewildering. How can it be so hard for such an obviously devastating illness to gain recognition? Why are we openly disbelieved?"
"To be disbelieved is bad enough, to be misdiagnosed as neurotic is worse, but to find ourselves virtual outcasts, denied benefits, sick leave and support can be totally devastating."
"It took ten years for the world to take Aids seriously. Our cross - the stigma of mental illness - is just as great a cross to bear, but we too will break through. And here at the Campaign we intend to make sure it takes a great deal less than ten years to get action and recognition for M.E."
"I am proud to stand - or should I say, flop - beside you all on the barricades."