ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
Closed while relocating
1300 128 339
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.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Theda's desperate fight against a chronic killer
Wednesday 3 March 2010
Western Australian newspaper WA Today has a profile of ME/CFS sufferer Theda Myint (pictured, with mother Carol Adams and partner Blake Graham):
Theda's desperate fight against a chronic killer
Theda Myint had the world at her feet.
Bright, beautiful and vivacious, the budding investigative journalist was weeks away from starting her dream career.
Now, 10 years later, she is fighting for her life.
She is unable to move beyond the confines of her home - and usually not beyond her bedroom, unable to speak for more than a few seconds before getting tired out, unable to tolerate lights or sounds, unable to remember what happened a few minutes previously, unable to live anything like a "normal" life.
"Thank you very much for coming," she tells WAtoday.com.au when visited at her Willetton home.
Saying those few words will leave Theda drained of strength for several days, so strenuous is the effort.
However, she was prepared to go through the torture of having a photograph taken, because the publicity might help end her torment.
Theda, 34, suffers from a form of myalgic encephalomyelitis, or ME, better known as chronic fatigue syndrome.
Though the two terms actually refer to different diseases, they are usually used interchangeably. But it's a disease that little is known about, and which is often the target of mockery.
But it's no laughing matter to Theda. Her case is severe.
There are no reliable statistics as to how many people die from ME/CFS, with most fatalities put down to organ failure. Her mother and full-time carer, Carol Adams, puts it bluntly.
"Is my daughter going to die because we can't give her the medicines she needs?" she said.
"It breaks my heart that she's lost her life. I've been told Theda's at the same level AIDS sufferers are (at) two weeks before they die."
But treatment has been even less reliable to date. Theda, like many ME/CFS sufferers, has had no joy after years of visiting local GPs, specialists and hospitals.
Most either gave up perplexed, or told her the disease was all in her mind. She even underwent electro-shock therapy and put herself through an exercise regime, which only made matters worse.
It was only when a nutritionally-oriented GP diagnosed ME/CFS that the type of treatment changed. But even this did not work.
For about nine years Theda had been unable to live normally, but she was at least partly mobile. That all changed for the worse last year when she suddenly deteriorated, to the point where she is now effectively bed-bound.
Her desperate family have one last hope. They want to send Theda to doctors in the UK and Belgium in the hope of finding a cure, or at least helping her get the remnants of a life back.
But the catch is the cost. With no federal or state funding available, the family have to pay for the trip themselves.
So, with the help of friends, they have launched a fundraising drive. The target is $100,000, which would enable Theda and her mother to travel to Europe in the hope of successful treatment.
Even sending blood for specialised testing to Europe will cost about $1600 for each sample.
A young life destroyed
Ms Adams said her daughter probably contracted ME/CFS after getting a variant of Hong Kong flu on a trip to the UK.
"She kept going through that, she backpacked around Europe and everything. She always pushed through everything and never recovered."
Since then, Theda's tale had been a nightmare. The UWA arts graduate's - and keen actor's - health nosedived when she was just weeks away from finishing a broadcasting course at the WA Academy of Performing Arts.
"She only had to do her final 10-week placement and had got that with (renowned television broadcaster) George Negus," Ms Adams said.
"She'd been offered work on Channel 10 and the ABC. Her dream was to be an investigative reporter and work for the BBC."
But Theda's condition got worse and worse, and she was unable to even start her placement.
The once-vivacious social butterfly's weight plummeted to 37 kilograms about six months ago - she has since put on 10kg as her family have managed her diet. Her main interaction with the world is listening to audio books, she is ultra-sensitive to any noise above the merest whisper, as well as to light, most types of food and many allergens.
The only constant is her devoted pet poodle-cross Maggie, who rarely ventures far from her side.
The search for a cure
For the past five years, Theda has rarely ventured far from her bedroom, except to go to a doctor or hospital. But that had sometimes proven worse than the illness, Ms Adams said.
"The awful thing is that doctors wouldn't believe her illness at first. Specialists didn't want to know, and when she went to hospital (Theda's partner Blake Graham) and I would do the nursing."
Various doctors prescribed psychiatric treatments - and even worse, exercise - which only made her worse.
Even when drugs seemed to work, they were taken away, Ms Adams said.
"There was a painkiller that really helped that one doctor gave her, but when we went to get some more we were told she wasn't eligible because it wasn't for the right illness. I wrote to the drug company and they sent me 10 boxes. We're on to the last one."
Any medication is expensive. Both Ms Adams and her daughter are on pensions and one of those pensions is swallowed up by drug costs of about $1000 a month.
Treatment in a hyperbaric chamber in Midland helped somewhat, but even that was stopped after the Health Department refused to allow it to continue because Theda did not meet the disease eligibility criteria.
The only state government funding they have been able to get is for an air-conditioner for Theda's bedroom and a special vacuum cleaner.
"I then wrote to (Health Minister) Kim Hames and said my daughter is dying, we strive to be a First World country, and he needed to do something about it," Ms Adams said.
Theda was then taken to hospital, where her mother said doctors again told her the illness was psychiatric.
But, unwittingly, one doctor probably saved her life.
"She was wearing an opiate patch for the pain and we didn't know but she was getting a reaction to it. He took her off the patch cold turkey, and she screamed with pain, but he did save her life," Ms Adams said.
Mr Graham, an ME/CFS sufferer himself, a clinical nutritionist and president of the WA ME/CFS Society support group, first met Theda about two years ago when Ms Adams took her daughter to see him for possible treatments.
He soon recognised what was needed.
"She's tried so many different treatments it's kind of ridiculous," Mr Graham said.
"There are probably only a handful of doctors around the world who really have the expertise."
Now unable to talk to Theda for more than five minutes twice a week, he has been in contact with medical professionals around the world seeking the best options for her.
"These international experts have a wide range of methods which they use to treat these cases," Mr Graham said.
"It's very possible she can recover from this. I think there's a good chance she can. At the very least, she can substantially improve.
"But it's very specialised and even many of the drugs are only accessible through international pharmacies, and some are frightfully expensive."
Ms Adams admits the odds are against her daughter.
"I want to believe it but I have read there's only a 3 per cent to 5 per cent chance for very severe cases. Theda told me it might be too late for her, but she doesn't want other people to go down the same road."
The onset of ME/CFS is commonest in younger adults, but it has affected everyone from pre-school children to octogenarians.
Mr Graham said ME/CFS is about four times more common in women than men.
"A typical profile is of a 25-year-old woman, much like Theda, but I've met very young kids with it. That's very sad."
Ms Adams said she knew of a nine-year-old boy who died last year, and had the disease for seven years.
There is also little funding for research. Analysis by the ME/CFS Society of Australia indicated about $117,000 was committed on average by the federal government in the past decade.
Other statistics are also sketchy. According to various studies, anywhere between 100,000 and 250,000 Australians may have some form of chronic fatigue.
It's a scenario familiar to Colin Neathercote, who spent about $130,000 to get himself treated by a US doctor after suffering from ME/CFS for several years.
Once unable to walk further than his letterbox, the 49-year-old has made a remarkable recovery. He is now preparing to run in this year's Berlin Marathon, and holds down a senior management position with the GESB super fund.
Mr Neathercote - a former president of the ME/CFS Society of WA who describes Theda's situation as one of the most severe cases of the disease he has come across - said a lack of understanding of the disease by the medical profession meant it was difficult to treat.
"Doctors fall into three categories," he said. "The first kind have read textbooks with nothing about the disease in them, they dismiss it as in the mind.
"Then there are doctors who know nothing about the disease but fundamentally understand they don't know everything about everything. They're still unable to do anything for you, so that's a dead-end diagnosis.
"But then there are doctors who just keep trying. They recognise there's no real treatment but they try various methods. I was lucky enough to find one of those.
"I reached the conclusion that going to a GP wasn't the way to go. I was lucky enough I had property I could sell, and basically spent the proceeds of that getting better."
Mr Neathercote was a former British Army pilot who was forced to give up his love of aviation, but has now started flying again.
He believes he contracted the disease after suffering heavy metals poisoning.
"The (medical) literature describes ME/CFS as akin to late-stage kidney failure, but what's added to that is that is just goes on for bloody ever and there just don't seem to be any answers," he said.
"A lot of friends and family just dismiss it. To have everyone turn their back on you rather than reach out and support you, it's like AIDS was when it was first around.
"The uncertainty leads to rejection and social dislocation - it's a double-whammy. I've had to find out both what the diseases was and an answer to get better."
While the latest research points to a retrovirus being a possible cause, much like HIV/AIDS, Mr Neathercote believes genetics also play a part.
"There's something that makes them sensitive to (the after-effects of a) toxic experience. That's why people never seem to recover. Hardly any people have been lucky enough to have fallen into the situation I find myself in."
Friends, family rally to help
The fundraising campaign is being spearheaded by Jane-Ann Crowley (nee Barnes), who first met Theda at UWA.
Mrs Crowley has already raised about $5000 through private fundraising initiatives. She also set up a Facebook page to try to get in touch with Theda's old friends, many of whom have lost touch as the illness increasingly cut her off from the outside world.
"I spoke to Carol (Adams) in January, and when I got off the phone I thought, 'my God, Theda's going to die, we have to do something'," Mrs Crowley said.
Like many, she knew of Theda almost by accident at university.
"We met when I was doing an arts degree about 12 years ago," Mrs Crowley said.
"She was like a social butterfly on campus and organised lots of different events. I wouldn't say then I really knew her that well but she's one of those people you really like to be around.
"She just had so much life and so much energy."
For more information on ME/CFS, go to www.mecfswa.org.au.
To make a donation to the Help Theda Fund, you can deposit funds into the following account: BSB - 126-566, account number - 21397904, account name - Help Theda Fund. This is a Bank of Queensland account.
If you would like more information about Theda, or to be added to a database to be kept informed of her progress, email email@example.com.
The above originally appeared here.
Articles about Theda have also appeared in the following publications:
Please note: This article contains references to death. If you have feelings of helplessness, or of suicidal thoughts, seek help immediately. Lifeline is an excellent starting point: Lifeline – Suicide Prevention resources and links.
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