Tuesday, 4 February 2014

Different kinds of light

The exhibition of Chinese lantern warriors at Edinburgh University is beautiful and haunting, the figures sway gently in the wind, the old quad is a gorgeous backdrop. These ninety figures made me think of Jelly Babies marching. And there are benches for resting, always important.

And Bruce Munro's 'Field of Light', which I have not yet seen, has just opened in St Andrew Square. It looks like a glorious field of glass tulips. We are lucky to have these wonderful installations on our doorstep.

Light also in the news that 8000 research journals will now be available free online in public libraries. No more ludicrous paywalls to access  papers of interest.

And more light in American journalist David Tuller's recent article on the absolute inadequacy of the name Chronic Fatigue Syndrome to describe a serious neuroimmune illness (the name was coined in the USA after the Lake Tahoe outbreak in 1984. Dr Dan Peterson has since apologised for the nonsense of such a name). Tuller’s excellent article makes the point that the illness myalgic encephalomyelitis (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.

I *can* see how the terminology is confusing for outsiders. In the UK, ME has been known as ME since the mid-1950s (and WHO has recognised it as a neurological illness since 1969). It was only towards the end of 1980s that the 'CFS' terminology came in to use in the UK, thanks largely to the core of psychiatrists known as the Wessely school. This school effectively 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 started to use the label ‘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. 

My rule of thumb is if you see the term 'CFS/ME', you know you are dealing with skulduggery.

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. It is hard to imagine now how very little information there was in the public arena. Personally, I always refer to my illness as ME, this is the illness I have, I simply don’t know what CFS is. And the fact remains that the psychiatric lobby's choices of treatment - graded exercise and CBT - don’t make people with ME better, and in fact often make people worse. In spite of  its 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.

Finally, I welcome this event featuring Dr Mark VanNess speaking about  the safety of exercise in PWME tomorrow in Bristol, and the wonderful Dr Nigel Speight. I wish I could go. Actual scientists, lighting the way, like hundreds of  marching lantern warriors. More on Dr VanNess's work here.


Lesley said...

I would love to see those lanterns! It's a pity that Edinburgh is so far away (and yet so near).

nmj said...

You would love it, Lesley, I'm sure!

Crafty Green Poet said...

I wish I'd known about this exhibition before it ended! Lovely photos.

nmj said...

I enjoyed it so much, it will stay with me, a visual feast, to use a terrible cliché. I actually saw it mentioned on Twitter, otherwise I would not have known.