Comments to this posting are now disabled
PERMISSION TO REPOST
Letter to AYME sent 23rd September 2008
Your articles on CBT and the lightning process by Lawrence Alexander
After many years of reading – and obtaining a good deal of encouragement from your magazine, I feel now I have no choice but to cancel my membership. This is a very sad decision to make, but I now feel that the original premise of AYME has been clouded by a more worrying agenda.
You may print sections of this e-mail if you wish.
Over the last couple of years I have noticed more and more articles in high praise of the various “new” psychological techniques that claim (admittedly, often through testimony and personal stories) to have had considerable benefit. At first this didn’t bother me too much: there are a huge variety of interventions out there that are supposed to help M.E sufferers, including acupuncture, aromatherapy, meditation etc, so I assumed by including the graded-exercise type measures you were simply reflecting that.
What worries me now is how one sided your stance has become. The “psychological camp” (including Wessley, Marcovitch et al) has always been, and will continue to be, a great threat to ME sufferers though their views that either the sufferer is faking or exaggerating their illness, or that they have the wrong mindset entirely and would get better immediately if they only thought more positively. In the last issue of your magazine (amongst some other excellent and moving articles in the old spirit of AYME) you devote three whole pages to graded exercise, Cognitive Behaviour Therapy and the “Lightning Process”- which I consider to be the new trade name for the same thing. There are frequent references throughout to the psychological techniques as a complete miracle cure. Apparently, as soon as you tell yourself you no longer have ME and start thinking more positively about life, you’re cured- tah dah! I think this is at best overoptimistic and at worst highly irresponsible.
I have been though a course of graded exercise/CBT myself and encountered the many, many professionals who follow it. Their approach in my case was basically this: emotional policing. No thoughts other than sugar-coated joy were permissible; I was not to think about my own symptoms again, I was to join a local college and begin a course straightaway, and all my problems, bodily and financial, were to magically “resolve themselves”. Luckily, in my case, in addition to the ME I have now been diagnosed with a heart condition which is probably contributing to a large amount of my fatigue. I say “luckily” because doctors are no longer bullying me into doing things I can’t do. How many other ME sufferers have undiagnosed problems such as this? How would they know if they’re being ignored? How many know how crucial low blood pressure is to the illness and the simple, practical ways to alleviate it?
I now see very little practical medical advice in your pages but an enormous amount of the psychological with very little critical questioning of the latter.
These mind techniques need far more scientific research into them before they can be marketed to your readership – some of whom are as young as eight or nine – as a complete miracle cure. If the treatments fail they could result in, at best, severe disappointment or at worst severe relapse from being told you can think yourself out of your entirely physical medical condition.
In 2004 my parents made a big effort in fundraising for your charity with a concert held here in Ludlow with youth choir Stream of Sound. Sadly at the time I wasn’t well enough to attend but it was a great success and about £700 was raised.
I have been ill for eight years. At my worst I was bedbound practically 24 hours a day. I am now on the upward curve and have a far better quality of life than I did even two years ago. I couldn’t have wanted anything more than to have been cured throughout those terrible years but there was literally nothing I could do! I always find it extremely insulting to have people brush off M.E as being merely the result of negative thinking. If I was a terminal whiner I could understand it but I have always been of the Oscar Wilde persuasion- “we are all in the gutter, but some of us are looking at the stars”. And that, I think, is the only cognitive behaviour therapy I will ever need.
Lawrence Alexander, aged 22
Statement by Lawrence Alexander, 2006:
Scroll down to: The following statement will be going to the GMC on Monday.STATEMENT BY LAWRENCE ALEXANDER to GMC Fitness to Practise Directorate:
Lawrence Alexander’s statement “in the best interests of the child”, 2007
Media coverage from the BBC, 2007