Why are 85 per cent of ME sufferers women? Cultural historian Elaine Showalter critiques a new anthology of their experiences
"I AM DUVET Woman... this bed is my mother, my lover, my husband, my wife." Evelyn McNally's poem could be the anthem for Knowing ME, an anthology from the Women's Press of poems and stories by ME women, long- term sufferers from chronic fatigue syndrome. Although they describe themselves poetically as invisible, shadows, or sleeping princesses, these victims of mysterious illness are both as visible and as characteristic of our fin de siecle as neurasthenics were in the 1890s. Neurasthenia was first diagnosed in the United States, but by 1895 the London society doctor T Clifford Allbutt reported that "every large city is filled with nerve specialists and their patients," primarily women complaining of physical and mental exhaustion for which no organic causes could be found. In the Nineties, 85 per cent of patients with ME around the world are female, and despite an enormous medical research programme, no physiological or biochemical explanation of the illness has ever been confirmed.

Caeia March, a novelist who has had ME for nine years, believes that the disorder is a "catalyst for change," a way into women's deep, intuitive ways of knowing. She thinks of the illness as "Middle Earth," "a landseasky place" of "great potential, where time moved differently... a place of transformation." For March, ME was a ticket to creativity previously stifled; "confined to bed for the first two years... I dreamed a novel until I was well enough to write it." She has edited a collection of personal narratives by British women from a variety of backgrounds, many of them lesbian, to describe a process of healing that depends on experiment and self-awareness rather than science or medicine.

Indeed, as the stories make clear, finding the "right" name for their disorder, one that satisfies their need for legitimacy and that fits in with their other values and beliefs, is a turning point in ME women's lives. Ajay finds the theories of American CFS specialist Dr Paul Cheney, who argues for viral triggers or toxic exposure, "sit most comfortably with me". Kate Cargreaves describes an Observer article by ME patient Sue Finlay as her epiphany: "I had a flash of recognition akin to a religious conversion." Once they undergo conversion, ME women follow a way of life with its own rituals and networks.

March and her contributors see this process as one of discovery and spiritual insight, but medical historians like the University of Toronto's Dr Edward Shorter view it as a spiral of suggestion. According to Shorter, "Patients are exposed to a diagnosis and assured by a sensation-hungry media that it represents the explanation of their problems. In the same breath, they are reassured that doctors do not know what they are talking about and that if a patient thinks he or she has a disease, then they must have it. This is a recipe for the disintegration of medical authority and a psycho-circus of suggestion."

ME women's stories about their illness are certainly sad to read. By their own accounts, these women were struggling with overwork, divorce, family problems, insomnia, psychosomatic illnesses, racism and homophobia. Caroline's father died when she was 18, her mother was disabled, she came out as a lesbian in her twenties, had a very stressful job, and describes herself as driven, obsessive, "one of those people who worked too hard at everything". She believes that "ME was 'sent' to make me stop." When the symptoms hit, they give up school, leave their jobs, and enter a culture of illness and invalidism that often lasts for decades.

Although they readily admit to the stress factors in their lives, ME women react with outrage to similar suggestions from doctors. Marcia is "adamant that anxiety/depression was not going to remain on my records unquestioned". Ajay indignantly refuses a doctor's offer of therapy and anti-depressants. Valerie's daughter Abbey is hospitalised, misses months of school and suffers terrible headaches, but Valerie refuses to have family therapy or to let Abbey take anti-depressants: "I decided I wasn't going to have her drugged up to the nines." They think ME is caused by organophosphates, viruses, chickenpox, electro-magnetic fields; anything but their feelings and conflicts.

Such programmatic resistance to psychological explanations, diagnoses, or treatments is the single most characteristic trait of patients with chronic fatigue syndrome. But their resistance to psycho- therapy, medication and exercise - the most effective medical regimen for chronic fatigue - does not stop ME women from eagerly embracing the full range of crack-pot treatments, quack nostrums, alternative medicines, vaguely religious rituals and junk therapies of the Nineties. They try homeopathy, reflexology, Chinese herbs, acupuncture, Shiatsu massage, Jin Shin Jyutsu, astrology, anti-candida diets, aromatherapy, kombucha fungus, organically-grown vegetables. They enthusiastically recommend hugging, chanting, stroking a cat (Freud would love this one). They are also convinced that they have food allergies to wheat, sugar, salt, dairy products, chocolate, coffee, red meat, fizzy drinks and white bread.

Most of all, Duvet Women "give in to their bodies", stay in bed, sometimes for months or years, and often abandon outside relationships in the interests of what they regard as a healing focus on the self. In "Celibacy, ME and Me," Lydia explains that in concentrating on her own healing she did not want to be "distracted" by the demands of a lover, partner, or one-night stand. Instead she kept a diary, soaked in warm baths, and took up bird- watching, knitting, making "exciting puddings", reading trashy novels and painting her toe-nails blue.

Of course there is nothing wrong with exciting puddings or blue toe-nails. My scepticism about Knowing ME does not come from disparagement of ME women's distress or contempt for the traditionally feminine nostrums and comforts they recommend for coping with it. Many a blue mood of my own has been cured by an exciting pudding. But I am sorry to see the Women's Press publishing and endorsing this sentimental, superstitious tripe about a serious, if psychosomatic, epidemic, rather than trying to ask and answer tough feminist questions about why women are still so susceptible to neurasthenia and how it might be prevented or treated. Childish insults of doctors and a primitive trust in women's intuition are scarcely adequate to the situation. Two years in bed is too high a price for women to pay for their creativity; invalidism and pain should not be required before women can feel free to assert their own needs and limits.

Unfortunately, the environment in which ME or chronic fatigue can be discussed is now so polarised that any dissenter from the party line has to expect hate mail, threats and wrath. "Showalter, repent your crimes," rants my latest ME woman correspondent. But those who believe women deserve better partners than their duvets, more hope than home remedies, will remain unrepentant readers of women's ways of unknowing.

'Knowing ME', the Women's Press, 12 February, pounds 8.99. Elaine Showalter's most recent book is 'Hystories: Hysterical Epidemics and Modern Culture' and is published by Picador

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