Friday, 31 January 2014

David Tuller article

Good article from American journalist David Tuller on the absolute inadequacy of the name chronic fatigue syndrome to describe a serious neuroimmune illness (the name was coined in USA after the Lake Tahoe outbreak. Dr Dan Peterson has since apologised for the nonsense of such a name). It is heartening to see journalists write factually about the illness, instead of the typically ignorant, influenced by Wessely school, articles we see here in UK - I don't know of any health editors who have tackled the subject of ME honestly or  with any real scientific curiosity.

David Tuller’s excellent article makes the point that the illness ME is not owned by any one speciality, this is true, and this is perhaps why it was possible for psychiatrists in the UK to flood into the ‘void’ and try to own the illness themselves. When I was diagnosed with ME in early 1984 - 16 months after becoming ill with Coxsackie b4 virus - by a consultant neurologist, I had never heard of Coxsackie or ME and had to educate myself. Dr Melvin Ramsay’s book ‘The Saga of Royal Free Disease’ is an excellent introduction. His book actually refers to the Coxsackie outbreak in west of Scotland which triggered my own illness.

I can see how the terminology is confusing for outsiders. In the UK, myalgic encephalomyelitis (ME) has been known as ME since the mid-1950s (and WHO have recognised it as a neurological illness since 1969). It was only towards the end of 1980s that the chronic fatigue syndrome/CFS terminology came into use in the UK, thanks largely to the core of psychiatrists known as the Wessely school. This school tried to ‘disappear’ ME and replace it with CFS, a nebulous fatigue syndrome that is a thousand miles away from the complex neuroimmune illness that is ME. They effectively tried to banish ‘ME’ and instead used ‘CFS’, but this slowly became ‘CFS/ME’ as they tried to merge the illnesses and dilute the criteria (for ME). And,  confusingly, ME is also now referred to as ‘ME/CFS’ by doctors who *do* believe in ME. (And CFS is, even more confusingly, also the research term used across the board.)

Personally, I always refer to my illness as ME, this is the illness I have, I simply don’t know what CFS is. I have seen my illness being  hijacked by the Wessely school over the last two decades, but the fact remains that their choices of treatment - graded exercise and CBT - don’t make people with ME better, and in fact often make people worse. In spite of the psychiatric lobby’s best attempts to out us as a patient population suffering from false illness beliefs, we remain ill. The obfuscation and conflation of ME with nebulous fatigue syndromes is simply not sustainable. 

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