ME and Ophelia

Wednesday, May 12, 2004

Wear a blue ribbon on International Awareness Day

In order to shed light on ME/CFS, for the twelfth consecutive year, May 12 has been designated as International ME/CFS Awareness Day. Sufferers of this illness, and the people who care about them, are urged to express their concern about the devastation that is ME/CFS. The strength of May 12 event lies in the fact that it offers individuals around the world an opportunity to communicate the devastation of ME/CFS on the same day.

The May 12 date was chosen to commemorate the birth date of Florence Nightingale, the British nurse who inspired the founding of the International Red Cross. She apparently contracted a paralysing ME/CFS - like illness in her mid-thirties, and spent the last fifty years of her life virtually bedridden. Despite her illness, Florence Nightingale managed to found the first ever School of Nursing. It is fitting that the "Lady of the Lamp" now shines as a ray of inspiration and hope to victims of ME/CFS from the 20th and into the 21st century.

Wearing a blue ribbon today, May 12th, shows support for International ME/CFS Awareness Day.

What is it like to grow up having an invisible illness?
A brochure with lots of information straight from teenagers about what it's like to be sick. A great resource to send to family and friends.

Free Brochure about CFS and ME
Explains what CFS and ME is, and what the symptoms are, along with other useful information.
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And wear a blue ribbon on May 12th

My post here today, along with the previous three on M.E (dated Monday May 10th), is dedicated to my fellow sufferers, and especially for all the young children and teenagers growing up with such a devastating invisible illness.

Sending love here - via Technorati - to fellow bloggers:

Student Wendy in Scotland
Nature lover Adagio in Wales
Artist Michael in Wales
And for Librarian and Needlework specialist Hazel in England, also suffering long term chronic illness
Along with Daisy-Winifred in Wales
And a very special hello to Cass who is dying of cancer.

Tip of the Day for May 12, 2004

Carbohydrate cravings are especially common during exacerbations when energy is low. Although a psychological basis for these cravings has been proposed, evidence suggests that the source is largely biochemical, possibly related to abnormalities in neurotransmitter levels and metabolism. Consumption of simple carbohydrates may increase pain, cognitive dysfunction, and fatigue, causing a "boost and crash" cycle (in which blood sugar level rises and then plummets quickly and dramatically). Further, carbohydrates may be best tolerated in the evening.

(Source: Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses - The Comprehensive Guide, by Katrina Berne, Ph.D. Published by Hunter House books and available at This tip provided courtesy of

Further reading:

Carers Together
The 25 % M.E. Group
ME-Web Main Menu: The ME-WEB is linked to all CFIDS/ME databases in the World.
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My complaint re The Scotsman's reporting

Having completed my post for today, I was about to publish to my blog when I came across an article in The Scotsman entitled "Lady with the Lamp sheds light on ME".

Now I've decided to contact Simon Lawrence, Chair of The 25% ME Group (of which I am a member) to bring the article to his attention. I feel it needs a robust response, our objections raised - and an enlightened correction and apology published.

In my view, ME is more fully understood than implied in the article. One quarter of all ME sufferers spend very long periods of their lives in bed and NOT, as is stated in the article: "only a very few of them". Consider at least one million ME sufferers worldwide: that amounts to one quarter of a million children and adults hidden in their homes - invisible, neglected and forgotten.

Articles such as the one in The Scotsman could raise awareness of the real shocking - and hidden - truth. I strongly object to the statements made by the so-called 'ME specialist' Prof Hutchinson. He needs to be informed asap by The 25% ME Group (the only organisation in Britain that supports seriously affected sufferers of ME).

As for the article's content re Florence Nightingale, it states, quote: "Her own doctors decided she had been suffering from what was then called neurasthenia". If my memory serves me correctly, ME was once classed as neurasthenia - before ME was defined in Britain over 50 years ago.

If reporters did their jobs properly, there would not be so many misconceptions and such poor understanding of an illness that has been documented for well over 70 years. Perpetuating misconceptions about this illness is cruel. It does huge harm to all sufferers and their carers - and drives some to commit suicide.
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Medical history - University College London

Clio Medica "Cultures of Neurasthenia, Edited by Roy Porter and Marijke Gijswijt-Hofstra, excerpt:

"Neurasthenia, meaning nerve weakness, was ‘invented’ in the United States as a disorder of modernity, caused by the fast pace of urban life. Soon after, from the early-1880s onwards, this modern disease crossed the Atlantic. Neurasthenia became much less ‘popular’ in Britain or the Netherlands than in Germany. Neurasthenia’s heyday continued into the first decade of the twentieth century. The label referred to conditions similar to those currently labelled as chronic fatigue syndrome. Why this rise and fall of neurasthenia, and why these differences in popularity?"
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By Ian Johnston in The Scotsman, 11 MAY 2004

Myalgic Encephalomyelitis (ME) was accurately defined in Britain, some fifty years ago, by Dr A Melvin Ramsay. Before then, during a time when little was known about the illness as we know it today, ME was referred to as neurasthenia. British nurse Florence NIghtingale died in 1910. For 50 years she suffered ill health and was, just like myself, virtually bedbound. In those days, her own doctors diagnosed her illness as neurasthenia.

Today is International ME/CFS Awareness Day and I am lodging a complaint with the Chair of the 25% ME Group re the Scotsman's article referred to in my post above. Here is a copy of the article, in full (note, I've highlighted my "issues" in bold typeface; I also object to the unhelpful term "yuppie flu" being perpetuated by people who should know better, including the media):

"...SHE was the founder of modern nursing who worked so long into the night to help injured soldiers in the Crimean War that they came to know her as "the Lady with the Lamp". But she was also later derided as a malingerer and a hypochondriac for taking to her bed on and off for more than 20 years.

Now sufferers of ME are claiming Florence Nightingale had the condition and have been holding a series of awareness-raising flag days in Scottish cities to mark her birthday on 12 May. But the claim that Nightingale was a sufferer of a condition once dismissed as "yuppie flu" has sparked controversy among leading historians.

During her lifetime, Nightingale’s condition was treated seriously by doctors, who saw it as a form of nervous exhaustion thought common among women at the time. Later scholars have viewed her retreat to her bedroom as a way to escape public life as she struggled to cope with the horrors of the Crimea.

But for Kelly McLellan, 32, the convener of the Edinburgh ME Self-Help group (MESH), the suggestion that Nightingale - who died in 1910 at the age of 90 - may have been a fellow sufferer could help increase understanding of the condition. "It goes to show that ME, or at least a poorly understood illness which causes serious chronic fatigue, is not a recent phenomenon and is an illness which can strike anyone," he said.

"But I think that we still have a long way to go. Recognition is not just about getting treatment - it is also about respect. A lot of ME sufferers are not treated well because people don’t recognise their illness. I hope that Florence Nightingale’s life shows that ill people deserve respect even if their illness isn’t understood."

Mr McLellan, of Barnton, Edinburgh, was forced to give up a PhD in biochemistry at Oxford University in 1996, two years after contracting ME, and now works as a private tutor. "Florence Nightingale’s story sounds a lot like many of the ME sufferers that I know. We all try to work round the condition in some way," he said.

Nightingale’s illness has been the subject of much debate since an academic paper in 1995 suggested she had chronic brucellosis, a bacterial infection often found in the Mediterranean. Her own doctors decided she had been suffering from what was then called neurasthenia, an obsolete term now associated with a psychosomatic illness. They recorded her symptoms as including headache, nausea at the sight of food, breathlessness, an irregular heartbeat, palpitations and a generally neurotic disposition.

Last year, a conference in the United States which looked into her illness decided she had "bipolar depression", which combines periods of depression with manic behaviour over a long period of time. However, it is the claim by Dr Robert Fekety, of Michigan University, that chronic brucellosis should be classed as a form of chronic fatigue syndrome (CFS), or can lead to it, which has been seized on by ME sufferers.

Allen Hutchinson, a professor of public health at the University of Sheffield and an expert on ME, said the condition was still not fully understood - studies are ongoing in UK, Australia and the US - and was used as an umbrella term for a range of ailments. "There’s no doubt that a few people with CFS spend very long periods of their lives in bed, but only very few of them. But if there is a truism it is likely to be that CFS has more than one underlying cause," he said.

Prof Hutchinson dismissed claims that ME was "yuppie flu", or all in the mind, as "simplistic and ridiculous". He said: "Clearly, these people need to be helped in some way or another. "I think it is possible that someone like Florence Nightingale had CFS; it’s almost certainly not a new illness. The notion of it being yuppie flu is not very likely."

Professor Lynn McDonald, of the University of Guelph in Ontario, a leading expert on Nightingale, said: "There’s an enormous amount of speculation as to what her ailment was, but obviously none of us is going to know. "I just don’t see the point of speculating - it’s something we cannot possibly know. "I think Nightingale is very interesting and her strategy for coping with her condition is interesting. But what she was coping with ... I think this is far-fetched, speculating about somebody who died in 1910."

Alex Attewell, the director of the Florence Nightingale Museum in London, said: "I can see why it’s been suggested that Florence Nightingale may have had ME, because having a famous person who suffered from it helps to promote understanding of it..."
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The 25% M.E. Group

I am a member of The 25% M.E Group. Approximately 200,000 people in the UK suffer from M.E.   Some do recover. However, approximately 25% of sufferers remain long term ill and severely disabled by the disease. Many are left isolated, housebound or even bedbound by the effects of the illness. It affects people from all walks of life, all age groups and can strike when you are least expecting it.

The 25% M.E. Group exists to support all who have the severe form of M.E. and those who care for them.  This includes people who are housebound, bedbound and wheelchair users.

Our Group's Patron is the Countess of Mar, who has a Message for us. Our medical advisor is Dr. Betty Dowsett.   We have lottery funding support for two part time secretarial and clerical workers.

At present there is no other organisation concerned specifically with the needs of the severely affected.

Wearing a blue ribbon today, May 12th, shows support for International ME/CFS Awareness Day.

# posted by Ingrid J. Jones @ 5/12/2004
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