ME/CFS & the WHO – what has gone wrong?

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.

See it for yourself.

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.

5 thoughts on “ME/CFS & the WHO – what has gone wrong?

  1. So the correct diagnosis is Postviral fatigue syndrome/ME. (I’ve had it for 3,5 years).
    But why is everyone calling it CFS then?

    And should we stop talking about CFS, and only talk about ME?

    • Ah, if only life were so simple.

      In the eighties, in the UK we had ME and in the US they had CFS, and they were exactly the same illness (identical symptomology). Then, in the early nineties (or maybe late eighties – I was too busy trying to get a diagnosis), the British medical establishment put their pointy heads together, looked at the US model of CFS, picked the bits they liked (mainly fatigue), ignored most of the rest and, as if by magic, we had a British CFS – which they promptly applied to ME (even though ME was clearly a different condition (and if you’re wondering about their motivation, you’re not alone). Since when, thousands of people with ME have official diagnoses of ME (while, a few doctors stuck with ME, adding to the confusion).

      For example, I was diagnosed with ME in 1995 (only took 10 years!). Throughout the whole session with the consultant (who was also a university prof specialising in researching ME), his colleague, and a whole class of medical students, all we discussed was ME. I was also enlisted in his ME research project. Everything he put in writing, though, to me and my doctor, was about CFS! Except for the quarterly ME questionnaire.

      This apparent volte face is very strange. I’ve seen it all over Twitter, but trying to track it down now, the better to answer your question, I can find no hard evidence for it. Indeed, in a parliamentary debate, yesterday, the health minister Earl Howe stated:-

      The Department will continue to use the composite term chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) for this condition, or spectrum of disease, as suggested by the Chief Medical Officer in his 2002 report. We recognise the condition as neurological in nature.

      And that’s the most definitive thing I’ve been able to find.

      Sorry I can’t be more helpful. I shall continue to try to find the source of of this – well, rumour, I suppose, in the absence of anything better – and if I turn anything up, I’ll be sure to get back to you. The problem is, when all this stuff was flying round Twitter, I was too busy to click through any of the Tweets. That’s a lesson well learned.

      Ron.

  2. Oh dear! 😀 That’s quite a complicated story… I’m trying to track some of the history of the diagnosis here in Norway as well, that’s why I’m asking. Because mostly the term ME is used here, but it gets confused with chronic fatigue syndrome as well, even if CFS is not in any diagnostic manual as I can see. So why do we have to keep calling it CFS? Yes, the psychosocial/somatic lobby is here as well of course, and I guess they’ll keep using CFS/ME together. I mean, if CFS isn’t the diagnosis – I want people to stop calling it that! So at least I will not use that term when I translate texts or blog about ME.

    Hmm… a little brainfog here now. I’ll try sleeping on it (as if that helps haha), and see if I can find out more tomorrow.

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