ME and Ophelia

Saturday, April 03, 2004

Of the way we were

Did you know that 25% of all ME sufferers are severely affected? That means either house, wheelchair or bedbound.

The above message is on a black and white poster that I received in the mail yesterday from the 25 percent M.E. Group. It's to mark International ME Awareness Day on May 12, 2004. I've been a member of the Group for the past 3.5 years.

The A5 poster is a black and white photo. It's a close-up of a young woman. Pale faced and dark haired. Laying flat in bed. With her head on a crisp white pillow. She's looking straight into camera. Her clear dark eyes reach out to me.

A length of slim see-through plastic tubing leads from the left side of her neck, along her cheek and into her left nostril. It's taped to her face to keep the feed in place.

Beside the bed, on her left, is a side table. On the table stands a modern photo frame. Silver grey with wide borders. Inside the frame is a brightly coloured photo. Of a young fair haired girl. Maybe 10 or 13 years old. Standing up at an awards presentation. Wearing a cheery pink athletes leotard. Her right arm hangs down beside her. Plush emerald green velvet curtains, like on a stage setting, are the backdrop behind her. Cupped in her left hand, is a trophy on a small square plinth. Her eyes are on the award in her outstretched hand. It's a dainty golden dancer.

On the photo frame's top border, engraved in large letters, is the word memories.

On the poster's lower half, in large letters, is the wording, "...of the way we were."
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Spent the last 50 years of her life virtually bedridden with ME

Florence Nightingale lived a long and remarkable life. Although she is known as the founder of modern nursing and one of the most famous women in history, few people know that she spent the last half of her life confined to her home and often bedridden, suffering from an illness similar to what we now call ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) [via Florence Nightingale Biography]
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Who inspired the founding of the International Red Cross

For the past eight years, May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). These diseases include ME (Myalgic Encephalomyelitis, the term used in most of the world)/CFS (Chronic Fatigue Syndrome, the term used in the United States), Fibromyalgia Syndrome, Gulf War Syndrome and Multiple Chemical Sensitivity Syndrome. They have been combined under the umbrella of CIND based on existing research and commonality of symptoms.

May 12th date was chosen to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale contracted a paralyzing, CIND-like illness in her mid-thirties and spent the last 50 years of her life virtually bedridden. Despite her illness, she managed to found the first ever School of Nursing. It is fitting that this determined woman of the late 19th century now shines as a ray of inspiration and hope to victims of CIND in the late 20th century - and 21st century.
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And handing of a petition to No 10 Downing Street

This year, The ME Association is joining forces with Castleford Aid for ME (CAME), Research into ME (RIME), the 25% M.E. Group, Tymes Trust and other ME groups in the demonstration at Whitehall on 12 May 2004, the handing of a petition to No 10 Downing Street and subsequent lobbying of MPs at the House of Commons.

10:30am: Static demonstration in Whitehall outside Richmond House, headquarters of the Department for Health. Carers, supporters and people with ME/CFS are encouraged to attend.

1.00pm: Presentation at 10 Downing Street of a petition requesting urgent funding of research into the aetiology (underlying physical causes) and pathogenesis (underlying disease process) of ME by specialists in physical disciplines such as endocrinology, neurology, etc.

So far, I've only managed to collect half a dozen signatures because I've not been up to many visitors over past month. Hopefully, I'll manage to contribute one page of signatures for the petition to our Prime Minister. We are trying to top our last petition of 17,000 signatures.

# posted by Ingrid J. Jones @ 4/03/2004
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