From "Emerge" Winter 2003

 

 

 

In 2001 I contacted The Weekend Australian to ask  if I could publish in Emerge an article by Emma Tom (Fever When You Hold Me Tight – Emerge Summer 2001). I received an immediate, very friendly reply – no worries, mate – of course I could. They gave me Emma’s e-mail address, she e-mailed the article to me – no probs.

The UK papers are horses of an entirely different colour. Very interesting articles by CFS/ME sufferers appeared in The Scotsman (11 February 2003) and The Daily Telegraph (11 March 2003).  I have e-mailed both newspapers twice to ask for permission to publish. The Scotsman has not replied at all and The Daily Telegraph eventually sent a reply asking me to contact their parent company. I decided it was all too difficult and did not bother to pursue the matter.

So, not to be outdone,  I’ll précis the articles for you:

 

·         In The Scotsman Ciara MacLaverty tells us she is now 35 and was struck down with CFS/ME when she was at university. For four years she felt she was fighting for her very life, but six weeks of respite care and support led to a slow turning point in 1991, after which she was able to undertake a small amount of volunteer work, and finally made the leap to 12 hours’ paid work a week on a phone helpline. However, a severe relapse struck her down in 1998. She says:

 

“It’s been more than four years since my big relapse and my sense of injustice about ME still fuels my will to fight on for recognition of the scale of this terrible illness. Very little has changed for sufferers in the last 15 years and I fear it may take another 15 years before the levels of pain, suffering and daily impairment of severe ME are finally recognised as being on a par with end-stage MS, cancer or AIDS. We don’t die, but many of us are forced to live like this for decades.”

 

·         The Daily Telegraph featured an article by Shirley Conran who contracted CFS/ME in 1970 when she was women’s editor of The Daily Mail.

 

“I was unconscious in hospital with viral pneumonia for five days and when I came out I had ME. I was 40, but it was like being 70.”

 

She says the turning point was when she decided to ignore the “experts” and manage the illness herself and this is what led to her second career - writing a book called Superwoman. However, because of the trouble she had encountered being diagnosed and believed, she kept secret the fact that she had CFS/ME and travelled extensively promoting her book.

 

“There is no mention of ME in Superwoman, the book that gave women permission not to be enslaved by housework. ‘Being ill is very bad for business’ she says’. You’d never get that seven figure contract if a publisher knew you were ill. The only prudent thing to do was to keep it a secret.’”

 

She earned the reputation of being a prima donna because she had to rest every lunchtime, refused the limousines provided for her because she needed a van with a mattress and didn’t attend any promotional social functions. She also acquired a reputation for not answering questions when interviewed and she explains that it was because she could never remember the question.

 

However, with the publication of this article, she has now confessed to her sufferings with CFS/ME which has worsened since 2001.

 

Superwoman sounds as though it could be an interesting read – one quote is “Life is too short to stuff a mushroom”.

 

·         Welcher and Welcher, ABC TV 27 March 2003 stirred up a storm with some members taking offence at a comment in the programme.  A lawyer, when referring to a staff member with ME in a wheelchair, said “...hasn’t even got a real disability. Just laziness isn’t it, with a medical certificate?”

The Society feels we should not be insulted by this programme which sends up everything and everybody. Nothing is sacred. I personally feel that the programme was having a swipe at those who do not believe in CFS/ME, rather than the sufferers and I don’t think we should be too precious about it. After all, it was referred to as ME, which does show a certain knowledge of the illness.

 

·         It has always been the opinion of the CFS/ME community that both Florence Nightingale and Charles Darwin suffered from illnesses which could have been CFS/ME, so I was very interested to see how their illnesses would be depicted in programmes on SBS TV. On 28 December 2002 in a programme on the life of Florence Nightingale, her illness was referred to as a ‘nervous breakdown’ and she was described as being in bed for eleven years, but it was considered there was a physical root to her illness.

Charles Darwin’s story on 2 January 2003 was the first episode of  SBS’s screening of the series Evolution. His illness was referred to as ‘constant digestive problems’ which were cured. When this statement was made there was a shot of Darwin being sluiced down with freezing cold water whilst standing at a pump. Digestive problems?

 

·         The Herald Sun Health Supplement, February 2003, featured a question and answer page about growing up by Dr Edwin Knight. To the question “What is Chronic Fatigue Syndrome?” this was the answer:

 

 “This is a disorder where excessive lethargy is present. It has much the same symptoms as multiple chemical sensitivity, or what has been called ‘allergy to the 20^th century’. While there are recognised symptoms there are no physical or laboratory abnormalities to help in the diagnosis. It therefore appears to be an illness but not a disease. A recent supplement of the Medical Journal of Australia suggested it was the result of disturbed brain function. In the 19t^h century those with similar symptoms were said to have neurasthenia.”

 

It all sounds so simple, doesn’t it?

 

In other media, there has been wide coverage, although mostly brief mentions, but some highlights are:

 

·         Kelly Heath featured widely with us all admiringly wondering ‘How did she do that?’ She survived in the sea for ten hours despite suffering from CFS/ME

·         Layne Beachley has also been featured widely with various, sometimes brief, mentions of her CFS/ME.