Action for ME strategy launch - Speaker's House, 29th June 2016.
I feel very lucky to be here this evening. Lucky because I’m out with you at such a glittering event, while someone else is putting my children to bed.
But I’m lucky in a deeper sense. And this evening, instead of talking to you through powerpoint charts and statistics, as I usually do, I’m going to talk about my personal experience with ME, to explain why.
When I became ill with ME I was 18 and training full time to be a professional dancer. The illness began with sudden and strange loss of power, and pain, in certain muscles. The symptoms spread, my condition deteriorated and within a year I was mostly confined to bed, too weak to do anything other than very basic self-care.
I wailed and sobbed, in the way teenagers do, over the loss of my dance career, a career I worked so hard for and that gave me such joy and exhilaration. But within months my condition began to improve, slowly but spontaneously. The joy of taking a few more steps each week, of going outside into the fresh air again, of feeling some life come back into my muscles, it revived my spirits and I embraced a new path for my life.
While I was recovering I got myself a couple of A levels at a local college and 3 years after dropping out of the Ballet Rambert School I embarked on a degree course at the London School of Economics. I was about 80% recovered, I could cope with student life as long as I as I got 8 hours sleep per night. No all-night parties for me. But I found a hunger for ideas and a zest for life. I threw myself into student theatre production and clocked up straight As in my exams and dreamed of far flung travels. My starry eyed gaze was firmly set on my future once again.
But those two heady years of student life turned out to be my last gasp of carefree youth.
In 1993 the crippling symptoms of ME reared their ugly head again, but this time even more vicious than before. ME at its most severe is a total shut down of energy pathways to the brain as well as the body. I lost the ability to sit upright, I couldn’t lift a spoon to my mouth, I sometimes couldn’t turn over in bed. I also lost the ability to process information from TV or radio. I couldn’t read, speak more than a few whispered words, or write my own name. It was like inhabiting a world between life and death.
I lost the life I had painstakingly rebuilt for myself. And this time I never got it back. That acute phase of needing 24/7 care from my parents eased, but this time my recovery, for what it was worth, was very slow, punctuated by relapses, and very partial.
ME has left me disabled, needing some help with day to day life, and needing benefits to support myself. But I am one of the lucky ones.
I am lucky to be here this evening. Because some people hit with the full ferocity of this disease as I was, or worse, make no improvement at all. They remain in that limbo existence for years, and even decades. The idea of coming to an event like this feels further away than the moon for them.
I now have a life that I love, and have carved out a place for myself in the world as a disabled person, and as a mother. But I find it almost impossible to extend my positive outlook on disability to people with the severest form of ME.
That's why I want to tell you about Emily Rose Collingridge, one of our community’s best-loved heros. Emily’s mother remembers how, as a feisty and passionate child, Emily’s health problems began at the age of six after contracting mumps. Despite struggling to attend school all her childhood and adolescence, her ME progressed and by the age of 15 its symptoms had her trapped in her own home. But she didn’t stop fighting. She worked from home as PR and fundraising manager for a newly formed charity for young people with ME and she continued charity work from her bed in her twenties until her ME became so bad that she had spent every day fighting for her life. During a small upturn in her health Emily, spent all her energy writing a book to guide others through the medically unknown territory of severe ME. Everything she did was, in her words, “to make something positive come out of my experience”.
But Emily’s ME continued its aggressive path until she had to be tube-fed and was doubly incontinent, heavily dependent on morphine and with sensory intolerance so severe she couldn’t cope with the company of her own family.
Emily tragically died at the age of 30. She belonged for a time to my local support group, but sadly I never met her.
I work with Action for ME because the charity’s purpose is to fight injustice, ignorance and neglect.
My own experience [see here], and that of my friends, has taught me a shocking truth: that the more ill you are with ME, the greater the ignorance and neglect you suffer.
There is no healthcare infrastructure for people like Emily. Apart from fellow patients, and her dedicated GP and consultant, no recognition of her terrible plight. This is because Emily was invisible to the world. Not just because she couldn’t leave her bed. But because there is still a denial in some sections of the medical profession that an illness, often given the innocuous sounding name of Chronic Fatigue Syndrome, could make a person as ill as she was.
It is far more comforting, as well as convenient, for all of us to think, and even hope, that ME could be a psychosomatic illness. Because then it could be turned around relatively simply. It need not steal young lives like Emily’s in their prime; and it need not cause them unendurable suffering.
But that psychosomatic paradigm betrayed Emily and it no longer stands up to scientific scrutiny.
I believe It’s time for a new strategy. One that offers hope of alleviating the suffering of some of the most seriously ill people in our society. And that fights for them to be treated with dignity and care.
I hope you’ll join me in whatever way you can, so that we can make this wish a reality.