Why I turned down an all-expenses-paid trip to the 2011 Sydney Writer’s Festival

This was written in 2011 after being shortlisted for the overall Commenwealth Writers’ Prize to be announced at the Sydney Writer’s Festival.

Imagine my delight on hearing that my novel, Sabra Zoo, had won the Europe and South Asia regional Commonwealth Prize for Best First Book. I wrote Sabra Zoo many years ago, and it was taken up quickly by a literary agent, who eventually found a home for it at publishers Telegram, who did an excellent job of turning it into a book. It was well received, and we were all rightly proud of it. Now the book is one of four going on to the final stage of the Commonwealth Prize, held in Sydney this year, and it is paired up with David Mitchellʼs The Thousand Autumns of Jacob de Zoet, which is in the running for the meatier Best Book Prize. Mitchell, along with the other finalists, will be accompanying his book to Sydney, where all the finalists will partake in week-long publicity at the Sydney Writersʼ Festival, culminating in the winnersʼ announcement on 21st May.

I, however, wonʼt be flying to Sydney with David Mitchell, as I have Myalgic Encephalomyelitis (ME), or, as itʼs also known, chronic fatigue syndrome (CFS). I was eventually diagnosed in 2006, after many years of seeing doctors about worsening symptoms, probably triggered by a serious viral infection in 1996. Before diagnosis I was repeatedly told that nothing was wrong with me, so I continued to push myself, with a corresponding increase in days off work. By the time I was diagnosed I had become self- employed as I could no longer hold down a full-time job, and despite reducing my hours as much as possible, was crashing on a weekly basis, unable to function at all. Ironically, it was when I first gave up full-time work that I started writing Sabra Zoo, spending Friday mornings on it. Perhaps — since we define ourselves through our work — I was subconsciously preparing for what was to come.

My relief at being diagnosed, thanks to a vigilant GP at a new practice who referred me to a thorough NHS consultant, was short-lived.

My relief at being diagnosed, thanks to a vigilant GP at a new practice who referred me to a thorough NHS consultant, was short-lived. It transpired that the only thing the NHS could offer me was Cognitive Behaviour Therapy (CBT). I went along, and was told by the therapist that he couldnʼt help me either, as I was already coping as best I could with the illness and wasnʼt suffering any psychological problems. I wrote back to the consultant asking for help, and received a letter that had me in tears. He was ʻencouragedʼ that the CBT team felt I was doing ʻall the correct thingsʼ, and advised that I ʻgo along with whatever they have suggestedʼ, i.e. nothing. I had been discharged to fend for myself.

So there I was, diagnosed with something no one could treat, still having to work because I was self-employed (kids and a mortgage), in debt because I had reduced my hours to the bare minimum for years, and with none of the income protection insurance which is recommended for the self-employed — the premiums were too exorbitant with my medical history. Because Iʼd continued to pay into my occupational pension, I applied for it early on grounds of ill health. It took two stressful years, with the help of my GP and a private ME/CFS specialist, to receive it. He was the second specialist to have me in tears, but for a different reason: it was the first time Iʼd been taken seriously by a doctor other than my GP, although he too had no magic cure.

He was the second specialist to have me in tears, but for a different reason.

So what is ME/CFS? According to the World Health Organisation ME is a neurological disorder, and certainly some of the symptoms bear that out: loss of balance, clumsiness, poor concentration, confusion, inability to find the right word (not as problematic as you might think for a writer). These add up to what is known as ‘brain fog’ by sufferers, but is more a toxic mist. Of course many people can’t find the right word, or get confused, but I can only compare me to my old self: I used to be able to do the cryptic crossword, but now I no longer even try, as the frustration exhausts me, and my spelling has gone seriously to pot. Throw in headaches, optical distortions and dizziness, and you have a rich mix that characterises the illness. Then there is the ʻfatigueʼ. Everyone suffers fatigue to some degree. But the relentless leaden fatigue I’m talking about is difficult to describe, even for a writer. My enduring memory of it comes from when I was still undiagnosed and working. I used to cycle to the station. Not a long ride, and mostly flat, but it was like cycling through treacle while dragging an anchor. At the time I didnʼt realise I was making things worse by cycling, or any of the other things I pushed myself to do even though my body was telling me to stop. So the severity and frequency of the post-exertional crashes increased: the days in bed, the night sweats, the grey pallor, the sore throats, the continuous flu-like feeling, waking exhausted even after sleeping through the night. Iʼll gloss over the irritable bowel syndrome and talk about my lack of tolerance to drugs, pharmaceutical or herbal. Worse still, even the smallest amount of alcohol makes me ill, so no champagne for me, fellow finalists! Heat intolerance is another problem, along with crowds of people and too much noise — all these things cause a sensory overload that exacerbates my symptoms. An evening spent with friends means a day recuperating, and I cancel half the social engagements I do make because I am simply too ill on the day (for this reason I rarely book anything I have to pay for in advance). Sometimes I am too weak to lift washing to the line, and have to crawl upstairs on all fours. But everything I am describing means I’m one of the lucky ones — my symptoms are classed as ʻmoderateʼ. Many sufferers (25%) are constantly bed-ridden, stuck in a chronically painful nightmare of darkened rooms with little support and no voice.

But everything I am describing means I’m one of the lucky ones — my symptoms are classed as ʻmoderateʼ

On the other end of the medical spectrum some doctors, mainly psychiatrists, consider ME/CFS to be a ʻfalse illness beliefʼ relating to childhood abuse, or an ‘avoidance behaviour’, and that sufferers become ʻde-conditionedʼ due to lack of exercise and need to do more of it. Indeed a recent study by UK psychiatrists (the so-called PACE trial) resulted in confident headlines that struck dread into the heart of everyone with ME: “Study finds therapy and exercise best for ME” (The Guardian, 18th Feb.), and even better “Got ME? Just get out and exercise, say scientists” (The Independent, 18th Feb.). It was a kick in the face. How did this disconnect happen? It turns out that the headlines did not reflect the subtleties of the study (but the damage was done), and closer examination reveals the crux of the problem when it comes to ME/CFS: how it is defined. There are many clinical definitions of the condition, which vary from the specific (the Canadian clinical working- case definition developed in consensus by many specialists) to the broad, like the Oxford criteria (the basis for the cohort used in the PACE trial), which places all the emphasis on fatigue, and excludes neurological problems. Of course chronic fatigue is present in many illnesses, including cancer and depression, and is sometimes unexplained — what the Canadian criteria classify as idiopathic chronic fatigue. A recent UK study found that 40% of referrals to the Newcastle NHS CFS centre did not have ME/CFS, but suffered from some other disorder, including 15% who had a psychological/psychiatric illness.

Unfortunately, in this country most research (if not all) has concentrated on this psychological approach to the disorder, and finding ways to manage it rather than treat it, so the emotional reaction of ME sufferers to headlines such as those above is perhaps understandable. If the headlines had read, “Scientists find exercise and therapy good for fatigue” then we could have joked about five million pounds of tax-payersʼ money being spent on the bleeding obvious. ME/CFS is certainly over-diagnosed, even when you exclude the self-diagnosed, so the clinical criteria really need to be sorted out, because confusing different conditions is hampering research and ruining lives.

So Sabra Zoo will have to go to Sydney alone, but you know what? It will manage. Iʼm sure the judgesʼ final verdict will not be dependent on me taking part in readings and interviews and panel discussions. I became a writer because I was no longer able to perform on demand. The book exists in its own right and has done well so far on its own merits. With the Commonwealth Prize Sabra Zoo has come of age and doesnʼt need me to hold its hand in Sydney. Although David Mitchell, if youʼre reading this, please have a glass of champagne on my behalf.