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Jody I do understand how you were using the phrase :) And I agree, it is a one size fits one illness. I may be confused about the term 'designer illness', but from the Anonymous comment above it seems I'm not the only one. I agree that it connotates that M.E. is 'trendy', or in other words a fad, which suggests it shouldn't be taken seriously. I think breakdown is an apt word for what is going on, but do agree that the difference between 'nervous breakdown' and 'breakdown of the nervous system' is a distinction that some people might not understand. There many semantic issues revolving around CFS/ME, and such things take attention away from other important issues. But unfortunately there are so many misconceptions about this disease out there, we awareness-spreaders must be vigilant and careful about our words. I've done similar things in the past myself. Another place it gets tricky is when you are discussing the role of psychology, which you also wrote about recently. We walk a fine line between recognizing that working on your thoughts - which do have real chemical correlations in the body and can indeed affect health - and the idea that your mind can cure you entirely. Such discussions often lead people with ME/CFS to feel they are being told "it's all in your head", which makes us defensive and angry, because it is like blaming us for being ill. My personal opinion is that with this illness, our bodies are too far 'broken down' for cognitive therapy to reverse the effects, but that it can definitely help us cope. It took years for our bodies to break down enough to become this sick, and it takes years for our bodies to recover, if they can at all. I've read about things such as the Lightning Process, which claims to cure you in a 3 day course without any medical intervention at all, and I find such claims prey on our desperation - the cost of the course is high, especially for those of us on disability and other extremely limited incomes.

Anyway, that is besides my point. When it comes to semantics, us M.E. advocates do need to be meticulous in order to avoid reinforcing the myths about our disease that perpetuate stigma.

I enjoy your column very much Jody, keep up the good work! :D

September 10, 2009 - 10:28am


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