I have ME. I’ve had it for 24 years and, for all that time, I’ve trusted the literature on the subject, but today that trust has been shaken to it’s very foundations.
I was in the middle of writing a blog post – not this one – about ME and why it’s not CFS, and citing the World Health Organisation’s definition of ME.
WHO ICD-10 G93.3 Multi-System organic/physical Neurological Disorder
As you may know, the WHO’s definition, dating from 1969 is cited by everybody involved with ME, it’s in all the literature – I’ve even mentioned it myself in passing, but this time, as it was a main plank of my argument, I did what I always do, and checked the source.
It’s wrong. It’s been wrong since at least 2004 So, for 40 years, experts in the field of ME have been quoting that definition so just when did anybody last verify it, instead of just repeating what the last person said, ad infinitum?
What the WHO now says, and has done since 2004 (that’s the earliest I’ve been able to track the change back to), as far as I can tell, is:-
ICD-10 G93.3 Postviral fatigue syndrome Benign myalgic encephalomyelitis.
You can put money on the government knowing all about this, and just how stupid must they think we all are? I can hear the derisive laughter from NICE all the way up here.
So, just how long has it been since anybody writing about ME has checked that the citation is still valid? For pity’s sake, even I do that. It’s a basic rule of writing about any factual subject – if you cite something, verify it. When so much relating to the acceptance of ME as a serious physical illness is riding on the WHO’s now outmoded definition, it’s quite unforgivable that organisations with far more resources than I have haven’t noticed that the WHO has changed its mind. I checked by the way, I searched their website to make sure it hadn’t been moved, but no. It’s been dramatically changed and no bugger has noticed. And that, frankly, is disgraceful.