Dissecting Edinburgh; dissecting nonsense

I have only done readings very occasionally so am very pleased about this (free!) event in a couple of months' time, part of the 'Dissecting Edinburgh' series at Surgeon's Hall, Edinburgh - 'Literature and Medicine in the Scottish Capital'. I will enjoy thinking back to the process of writing and editing the novel, much of which I did in bed, getting red felt pen on my pillows. I very much hope those who are running the new  'ME-CFS' Astley Ainslie Clinic in Edinburgh will attend - and those in the Scottish government who are funding this 2-year pilot project. The new 'CFS-ME' clinic or 'ME-CFS'  - or whatever thay happen to call it on the day - charmlessly and ludicrously continues to conflate neuroimmune illness with mental illness. This invented hybrid-illness label benefits no one, but still the biopsychosocials persist, in spite of the mountain of biomedical evidence worldwide; in spite of the Scottish Good Practice Statement caveat that ME patients claim to be made worse by graded exercise; and in spite of the PACE trial being unmasked as la la la nonsense.

And am aghast at the wording in the job description last year for a psychologist at the new 'CFS-ME' clinic, (you have to scroll down), which someone on Twitter sent me: This caseload will include a proportion of complex cases eg. Patients who have experienced previous sexual abuse, have active suicidal ideation or have pre existing mental health problems.

Do people with MS and lupus also usually share clinics with those who have 'complex medical histories, suicide ideation and experienced sexual abuse'?  I think not. Of course such patients need huge support too, but why are they told they have a neuroimmune illness when they don't? (And I would bet thoughts of suicide come to anyone dealing with serious, abject chronic illness at some point, whether it is ME or not, and that the proportion of those with ME who have also suffered abuse is no higher than any other neuro/physical illness.) As has been said a million times - and will continue to be said - it  is the massively flawed criteria (yawn yawn yawn) that result in over-diagnosis of ME in the first place. The people behind setting up this clinic obviously haven't read the International Consensus for Criteria on ME (2011). Or have chosen to ignore it (one  suspects they ignore a lot of what doesn't fit with ther flawed views). And they honestly wonder why people with my illness are 'hostile' when faced with this crap?

And the wording on the patient leaflet is simply bizarre - only patients who have 'been given, and accepted, a diagnosis of ME-CFS' are invited. 'Accepted', what on earth does that mean? The GP leaflet is even worse: We will not be able to consider domiciliary visits or extremely entrenched, complex patients. So basically they can't help severely ill, housebound/bedbound people with ME, but only those who are mobile and open to brainwashing. The leaflet states that the service will be over-subscribed so not everyone referred will be accepted, but not to worry, I won't be asking for a referral any time soon (being entrenched and all.) And note the symptoms, 'persistent, excessive tiredness or fatigue', nothing about post-exertional malaise or post-exertional neuroimmune exhaustion - the cardinal feature of ME - or viral trigger. So GPs are unwittingly (or not) colluding in the whole hybrid-illness charade.

I used to be comforted by the fact we didn't have any of these GET/CBT - pretending to help but actually challenging false illness beliefs - clinics in Scotland. But alas, the Wessely school has come to roost in Edinburgh. Sadly, NHS Lothian are myopic in the extreme if they think people with my illness will be helped a jot by this. What a waste of money! Anyone and everyone with idiopathic chronic fatigue is simply thrown into the 'ME-CFS' bucket. I'm so glad I didn't have a crystal ball in 1983, sitting on the orange chairs of the neurology clinic in Glasgow, so wretchedly ill. Really, is it too much to ask that in 2013 we can have just an ME clinic for people with ME? Apparently so. (And how about offering something useful  like therapeutic massage instead of  goddamn aerobics. Then I might go.) I am so very, very, very tired of this adding on of any and every unexplained fatigue handle to ME; it's a kind of blasphemy. This clinic is a fatigue clinic, nothing else, so please let's not pretend it is for my illness (Ramsay-defined ME for anyone who is curious).

Anyway, back to the writing: the day Helen Fleet is diagnosed in 1983 by consultant neurologist, chapter eight of The State of Me:

*

A week before my twenty-first, I was summoned to Bob’s consulting room for the second time. He was expressionless as I sat down on the orange chair.

You have a whole range of abnormalities, he said. Your muscles aren’t producing energy normally.

Why not? I said.

We think you have ME, myalgic encephalomyelitis. It’s a post-viral syndrome, triggered by the Coxsackie virus, in your case. There’s no cure and it can last for five years. We’re doing some clinical trials which we would like you to take part in. We’ll be in touch. Can you ask your mother to come in now?

I came out and Rita went in. Someone had left a Daily Record on the chair next to mine. I picked it up and looked at the front-page photo of Princess Diana with her six-week-old baby.

When Rita came out of Bob’s room, her eyes were watering.

On the way home in the car, I hoped we’d crash and that I’d be killed instantly and Rita would walk away without a scratch. I kept thinking of the David Bowie song ‘Five Years’: . . . five years left to cry in . . . steady drums, louder and louder and louder . . . five years, stuck on my eyes, high violiny bit.

*

Helen has a diagnosis! Hurrah! Hurrah! Hurrah! She has blah-de-blah-de-blah, it’s official! She’s got Malingerer’s Elbow! She’s chronically fatigued! She’s a yuppie with flu! Whatever your point of view, she’s fucked.

 *

I shift between first person and third person throughout the book, third person to show her most ill, isolated times, and of course, the third person narrator has a knowingness that Helen doesn't. ie that 'chronic fatigue' will come to be the tragic misnomer for Helen's illness a decade down the line, that myalgic encephalomyelitis, the neuroimmune process that has punched into her life, will be endangered as a diagnosis, hijacked by psychiatrists. The flitting between third and first was mostly intuitive, it just happened. I also use asterisks a lot - and present tense - to slow down the pace, though the asterisks have been lost in the Kindle edition, but I'm told it hasn't detracted from the experience of reading the novel, but I still prefer the paperback version for this reason, while delighted that people can also read the e-version.

And back to the event (sorry, but this CFS nonsense in Edinburgh is just upsetting and distracting). There are two other writers, Tracey Rosenberg and Alison Summers, also reading,  about cancer and Pick's Disease, respectively. I don't think I've ever been  inside  Surgeon's Hall, trying not to think about how big it might be, I imagine a big draughty lecture hall, but maybe it'll be a wee cosy room, and I've told them I'll need to sit down to read. More than ever the truth of this illness needs to be told, and my novel does just that. I am delighted to  be part of this Medicine and Writing event.