I came across a Facebook page, FMS/CFS/ME Information. Not sure I want to be a "fan". There seems to be some sort of a letter-writing thing going on, about Dr Crippen and The Guardian, not sure why, but it could have something to do with an article called "the ME debate", which I tend to agree with.
ME is surrounded by a sad potpourri of cod-science, misunderstanding, prejudice, anger, denial and indifference. Both doctors and patients are to blame. Doctors are victims of their rigid training. If the history, examination and tests do not produce a diagnosis, the doctor's wiring starts to overheat and there can be only one conclusion. The patient must be mad. "Mad" is a diagnosis. The doctor sighs with relief. The patient cannot win.One of the few treatments offered to ME patients is access to Cognitive Behavioural Therapy, or CBT. Oh dear! The "militant" sufferers that Dr Crippen refers to don't like this at all. They think it means they're being dismissed as loonies. Maybe some of them are, especially the very screechy ones. However, the idea behind CBT is to encourage people suffering from a variety of problems to rethink their attitude towards those problems, and adopt a more realistic one. What's wrong with that? However, maybe a cheaper alternative might be to offer assertiveness training on how to state your case effectively, without appearing to be a loony. That'd help. "Brain fog", a common effect of TBI (this bloody illness), isn't an excuse for not thinking.
Some people with ME are even more blinkered than the medical professionals. Patients with chronic illnesses such as cancer or heart disease sometimes get depressed and are helped by psychiatric treatment. You cannot suggest this to a militant ME sufferer.
I've noticed that whenever I've attracted lots of negative feedback on this blog (the last time was when I blogged about men who use prostitutes), there's not much in the way of rational argument on offer, which is why I don't approve many comments. When someone doesn't have a reasoned argument to offer, he or she will often resort to sneering, or name-calling. My mum used to tell me, "Sticks and stones may break my bones, but names will never hurt me." Maybe not, but they annoy me. When I was about eight, I'd get into trouble to for thumping idiots. Nowadays, I'd rather ignore them.
Dr Crippen wrote about "the many who march under the ME banner but who have nothing wrong with them other than an inability to cope with life." He's right. I've met them. No wonder it's so hard to get some doctors to take ME seriously. How can you take someone seriously who wears a little plastic box on her belt that (she says) focuses "healing rays" on her body? Or someone who swears that she's really, really ill with ME, but arrives at a support group meeting out of breath after a session at the gym? Or people who say, "ME? Yes, that's what's wrong with me. I get awfully tired..." before going on to describe a typically hectic lifestyle, with copious amounts of alcohol thrown in.
The sooner they work out what this bloody illness is, and offer a foolproof test, the sooner we can disassociate ourselves from the inadequates. Oh, and before anyone takes that personally - if the cap fits, wear it, otherwise don't be so bloody silly.
Note: This post has been reinstated after it was deleted, with all my other posts, some time ago. Consequently, all the comments were deleted too. As I anticipated, there were some that were strongly critical, but that's not why I deleted them.