The Herald article - Invisible ME

As you know, this blog is meant to be a mixture of observations on living with ME and living in general. It's been a bit ME-heavy recently and I hope to write about other topics soon, but for the record, here is the recent article from The Herald newspaper.

The Herald (Glasgow), December 4

The invisible sufferers of ME by Alison Chiesa

Awakening to the sharp winter sunshine of December 6, 1986, a young university student believed she had a future filled with potential. Apart from a touch of flu, Ciara MacLaverty, at just 18, was confident in her ability to realise her dreams. Perhaps she would become a writer, taking after her father, Bernard, the Irish author who moved to Scotland in 1975 and has since held university posts in Aberdeen and Glasgow. If not a writer, maybe a teacher, a psychologist, or a dancer. She would then marry, she thought, and have three children.

Time passed and the intervening years brought changing governments, scientific discoveries, and medical breakthroughs. But Ciara never recovered from "the flu". Today, at 38, she has yet to make any of her dreams a reality. Although unaware of its grim significance at the time, that date in December marked the start of a war with Myalgic Encephalomyelitis - a continuing struggle that has left Ciara largely bed-bound for two decades. "I'd never even heard of ME before then," she said, as she lay on the sofa of her home in the west end of Glasgow, "But it has robbed me of what I could have been."

As the inauspicious anniversary approaches, the decision to speak out by Ciara and her mother, Madeleine, her primary carer, is political. It is fuelled by fury at the "gross injustice" being done to the ME community. "I am very ambivalent about having my life exposed," said Ciara, "but I feel I must speak out to highlight a situation that hasn't changed in the last 20 years. Biomedical research into our condition is still being ignored by the medical establishment. We are being made to feel invisible."

Her comments coincide, and have been galvanised by, the recent publication of a new independent report, the Gibson inquiry, which calls on the government to "invest massively" into researching a physical cause for ME. Released by a committee of MPs, and led by Dr Ian Gibson, a Scot, the inquiry took nearly a year to complete and found that many of the estimated 250,000 people in the UK with ME are written off as neurotic because a minority have been misdiagnosed. It also concluded that the medical establishment's belief that ME is "all in the mind" has biased research against investigating a physical cause for the condition. Most funded research studies have been directed at psychosocial management strategies, such as pacing energy levels and coping with limitations. "This is a bit like using carrot juice or exercise to treat cancer, or talking therapy to treat Parkinson's disease," believes Ciara, who spent the earlier years of her illness with a constant migraine-type headache, so severe that she would bang her head against the wall above her bed in a futile bid to relieve the pain.

Although currently slipping into a relapse phase of her fluctuating condition, her determination not to be portrayed as a victim is firm. She dressed, washed her hair, and put on make-up before being interviewed, even though this exhausted her to the extent that she had to retreat to bed for the rest of the day. Like many sufferers, who feel their whole system is "poisoned", she finds demeaning the popular term used to describe her condition - Chronic Fatigue Syndrome. Welcoming the inquiry's findings that scientific research into ME may lead to a proper diagnostic test for the condition, she said: "It is as much about extreme tiredness as Alzheimer's is about extreme forgetfulness. ME should be recognised as on a par with end-stage MS or cancer." Having renamed her condition the "Living Death Syndrome" it leaves her, at its worst, in constant severe pain, unable to sit upright because her brain feels like it is "slopping about in a solution" in her skull. She has also gone through periods of being unable to see properly, chat, or hold a knife and fork. Her mother, Madeleine, whom Ciara admits "bears the brunt" of her battle, has had to cut up her food for her, and even wash her hair, while she has lain pained and exhausted.

On better days, however, she can venture out of bed for around three hours. If she feels well enough to step outside, she must travel even short distances by car. She also wears earplugs in public places. Her sensitivity to noise is so extreme, that even the sound of a hand dryer causes "wincing pain" through her skull. No conventional coping treatment has helped. Neither has the £15,000 worth of complementary therapies she has paid for in her desperation to lead some semblance of a "normal" life. "You clutch at anything," she said. "What you're really clutching at is hope. But there must now be definitive scientific research done. I want someone to be paid to look through a microscope."

Her mother could barely contain her frustration when asked to sum up how she felt about seeing her daughter's potential drain away. "I have had to watch Ciara suffer over the years and she's as ill now as she was 20 years ago," said Madeleine. "She has missed out on so much. I've gone beyond being sad about it. Now I'm just so angry because nothing is being done. This does a gross injustice to ME sufferers. I've been so frustrated I've even considered lying outside the doors of the medical research councils in protest." She added: "While not wishing to take away from other causes, I get angry when thinking about how much money is put into researching something like bird flu…Yet, here are all these people with ME being ignored. Some are being drip-fed, others are reaching the age of 20 without ever having gone to secondary school."

Around 25,000 children are thought to have the illness in the UK. According to the ME Association, it is the biggest cause of long-term sickness absence in schools. On the MPs' report, which also finds the UK is falling "way behind" other countries on ME research, Dr Charles Shepherd, medical adviser to the ME Association, said: "Those who have been named and shamed in this report can no longer ignore its very powerful messages."

One of the few charities worldwide that is privately funding biomedical research into its root causes is Perth-based ME Research UK (MERGE) which last year uncovered biochemical abnormalities in the circulation of adult ME patients, suggesting a persistent infection that keeps the immune system working overtime. Dr Neil Abbot, its director of operations, welcomed the report's assertion that "the origins and causes of the whole ME problem will only be found through further scientific research". He added: "This is a vital step. It is marvellous that the inquiry has recognised psychology cannot be the answer to the illness, and that the 'UK precedence [that] has been given to psychological research' should cease." Ciara believes a cure can be found in her lifetime only if policy-makers pay heed to the report. While she waits, she is at pains to achieve "bite-sized" pieces of past dreams. Spending time with her younger sister's children is a great source of joy. She has also published her first collection of poetry. It was written largely while bed-bound, from where she could look into a townhouse used by the medical research department of Glasgow University. Her collection, Seats for Landing, contains a poem called Overlooked, which she hopes best describes her "incarceration". "I try not to think too much about the future," she said. "I live one day at a time, appreciate the smallest things, and take nothing for granted."

-C