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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

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ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

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David's been bedbound for 7 years

Thursday 26 May 2011

From Irish newspaper the Andersonstown News:

 

Antoinette Christie
Antoinette Christie

David's been bedbound for 7 years

By Gráinne McWilliams
Andersonstown News Thursday 23rd of May 2011

A LOCAL mother-of-three has spoken out about her fight to get treatment for her son whose life has been put on hold because of a serious neurological condition.

Antoinette Christie from Orchardville Avenue spoke to the Andersonstown News this week ahead of a special presentation in Belfast by a groundbreaking researcher on ME from a top neuro-immune disease research facility in Nevada, USA.

Nineteen-year-old David Christie was diagnosed with severe Myalgic Encephalomyelitis, or ME as it is commonly known, when he was just 12 years old after coming down with a viral infection.  The debilitating condition, which attacks the immune system, has left young David bedbound and housebound for the past seven years.

“Since our son became ill we have been searching for answers to try and find something that will help him recover his health and retrieve the life he had pre-illness,” said Antoinette.

“His condition is so severe that it affects every aspect of daily life and he lives with pain on a daily basis.  His symptoms include sensitivity to noise and light; he is unable to regulate his body temperature so he is cold one minute and boiling hot the next; he has concentration and memory problems; problems with his balance and fine motor control (the ability to use small muscles such as those in the hand); disturbance of vision and hearing; and gastrointestinal upset.  

“He also suffers from mouth ulcers, rashes, immune deficiencies, poor control of infection, chronic inflammation and overwhelming fatigue.  He has not returned to school since he was 12 years of age.”

Antoinette explained that when David was first diagnosed she felt a “real sense of relief that there was a name for what he was suffering from”.

“But then they told us that it couldn’t be treated,” she said.

“David unfortunately is one of the 25 per cent of ME sufferers who have a severe form of the illness.  He’s been given no treatment from the Health Service here as there are no facilities to treat ME sufferers.  He gets tablets for his pain and tablets for all his other symptoms, but that’s it.  We have a very understanding GP, but other than that, nothing.”

Once diagnosed, David could no longer attend St Mary’s Christian Brother Grammar and had to abandon sports such as his beloved Ju-Jitsu, at which he excelled and won medals.

“It is only within the last year that we’ve been able to get a home tutor for David since he left school, which can be blamed on a combination of him not feeling up to it and getting an available tutor from the local education board,” said Antoinette.

“But since being home-schooled he has taken his GCSE Higher Maths, which he got an A in, and just this afternoon he will sit his English GCSE.

“Since becoming ill David has reached many milestones, the most recent being his 18th birthday,” Antoinette continued.

“Whilst day-to-day life is by no means normal in comparison to other 18-year-old young men – he has to spend every day at home, with one afternoon a week of home tuition and the occasional outing, which always results in increase in symptoms – we are now at a place after seven years of living with the condition where with careful management David can once again begin to enjoy a better quality of life. This has only been done by learning to pace himself within the limits of the condition and not pushing beyond this, as to do this has led to dreadful consequences for him. A few hours out with friends or family will still result in his symptoms becoming worse.  This is daily living for all ME sufferers, the more they do they worse the symptoms become. Even careful, incremental increases cause  this, which is why graded exercise does not work for them. The main defining feature of ME is how the sufferer responds to exercise, be it physical or mental exercise.”

Faced with nowhere to turn for help for David, the Christie family have been steadily raising funds for the charity ME Research UK, raising £17,000 in total, along with searching for medical advances on the disease across the world.

“As a family we have learnt a lot about ME, and have come to the conclusion that without biomedical research we will never find a cure for this condition or find appropriate treatments,” said Antoinette.

“In our search for answers we came across the Whittemore Peterson Institute (WPI) for Neuro-Immune Disease in Nevada and became aware of the research they are carrying out in relation to ME. Dr Judy Mikovits at the institute formed a research team to look into the disease and her efforts have produced amazing results in the area, including the discovery of the infectious retrovirus XMRV in more than 95 per cent of ME patients studied at the institute.

“Dr Mikovits will be giving us an overview of her work at the weekend’s presentation so I would urge anyone who wants to learn more about ME or has a loved one suffering from the condition to come along.

“I would also urge anyone from the medical profession to attend this event as more needs to be done locally to help treat this disease.”

If you would like to attend Sunday’s presentation, which takes place at 2pm in the Holiday Inn, Ormeau Avenue, please book your place in advance by calling Antoinette on 07809370811, Jeanette Marley on 07936378881 or by emailing joanmcparland@live.co.uk.

To learn more about Antoinette’s efforts to raise awareness of ME, visit http://familyfights4me.blogspot.com.

 

The above originally appeared here.

 


 

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