Millions Missing protest - Edinburgh 12 May, 2018

I got to the #millionmissing protest for the last twenty minutes, just in time to hear Carol Monaghan MP's speech. I was happy to be able to shake her hand and give her a wee brief hug afterwards. I told her she will never know the enormity of what she is doing by challenging PACE and campaigning for biomedical research. The sun was shining and it was glorious to see activism in action by a community of patients who have been wronged by the medical establishment for far too long. Heartbreakingly, the inquest of 21-year-old Merryn Crofts, who died a year ago, was held yesterday and the coroner's verdict was death caused by ME. A mental health expert stated that Merry had no psychological illness. 

I hope the core of psychiatrists with Wessely at the helm are thoroughly ashamed of themselves. Wessely, of course, has said on different occasions that he doesn't care how unpopular it makes him but the more severely ill you are with ME, the more likely there is to be a psychological element.The Wessely gang are so thick-skinned and arrogant, I doubt very much they will be touched by this verdict, they will no doubt blather on about how ME and CFS are not the same thing, and that they have always been studying CFS - though they happily conflated ME with fatigue for decades - always careful to say in the small print that ME and CFS may not be same illness. This was always their get-out clause.

Shame on all of them, for all time.

Photo from @lighthousebks of Saturday 12 May:

The Istanbul Review: Issue 5

Delighted that the gorgeous The Istanbul Review Issue 5 is now on sale in Looking Glass Books, a wonderful indie book store in Edinburgh. I have flash fiction in this one. This issue also has writing by Elif Shafak and Lesley Glaister. And the stunning cover artwork - and art within - is by Canan  Berber. The Istanbul Review gives 2.5% of its profits to NGOs across the world promoting literacy.

Good things: film, dance, books

Last week, I got the DVD of  the documentary film Voices in the Shadows, which came out in 2011 -  of course, I've known about the film for ages, but have never felt in the frame of mind to watch it, until now. The portrayal of severe ME - the most severe imaginable - is harrowing and although I was not this severe, it still taps into my very bad times, and chills me to be reminded of them. This film is beautiful in its simplicity: the multi-systemic, devastating illness ME  has been hijacked by psychiatry, the criteria diluted, the research polluted. Patients are being made worse by brutal regimes of graded exercise. It is well worth watching. The narratives will shock you, even when you think you are jaded and can no longer be shocked by the neglect - and abuse - of the medical profession towards patients with ME. Dr Nigel Speight and  Professors Leonard Jason and Malcolm Hooper  articulate the plight of severe ME sufferers with such grace and compassion, it's hard not to have tears. My anger at the gang of medics who are guilty is reignited. And my heart breaks - again - for those who suffer from severe, unremitting illness. Dr Speight talks of a 'sort of new Stalinism coming into British medicine'.

As I got ill in autumn 1982, before the Wessely school nonsense/conflation/denial -  I had Dr Behan and Dr Ramsay on my side - I was myself never forced by powerful medics to pretend that I was not actually physically ill. Although, it was not a walk in the park getting diagnosed, it took 18 months. And like most PWME, there were people in my life I simply blocked out because of their  lack of understanding. You have to, in order to survive. And I will never forgive those people. I often say that without strong family support this illness could undo you. I also think that it is actually impossible to truly ever understand ME unless you have it. Even now, borderline moderate/severe - housebound much of the time because of post-exertional malaise (PEM) - I can look fine and seem fine for a window, but behind the scenes I feel as I've been hit all over with a mallet and my brain is on fire. I can't form a sentence, I drop words. I  bump into things.

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And this is gorgeous,  I love the energy in the performance -  actor Sarah Gordy  dancing in 'Violence of Discovery, Calm of  Acceptance'.

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Nothing makes me happier than secondhand book stalls. Such jewels and bargains to be found last week at a Christian Aid book fair in George Street, literary fiction and non-fiction for £1 - boxes and boxes of  books, including Penguins and Pelicans. It was sunny and there were trestle tables outside, it was like Paris. It reminded me of how much I love paper books. And I wondered what secondhand book fairs/shops will be like in fifty years. Will they even exist?

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.