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Mystery disease specialist snubbed by WA doctors

Wednesday 8 September 2010

Just six Perth doctors have signed up for a free
Chronic Fatigue seminar.

WA Today reports:

Mystery disease specialist snubbed by WA doctors

Katherine Fenech
September 7, 2010 - 7:50AM

West Australian chronic fatigue syndrome sufferers are disappointed that only six Perth doctors had indicated they would attend a free seminar by a world-renowned expert.

Little is known about myalgic encephalomyelitis, better known as chronic fatigue syndrome, even among doctors. Statistics are sketchy, with various studies finding there were anywhere between 100,000 and 250,000 Australians suffering from a form of chronic fatigue.

The disease was dragged into the spotlight earlier this year by WA sufferer Theda Myint, who has had such a severe form of ME/CFS for the past 10 years that she is bedridden, often able to do nothing but lie in a dark, quiet room.

Her mother, Carol Adams, said Ms Myint's appeals for help from doctors or hospitals were often met with derisive remarks or mockery. She said many doctors have told her daughter the illness was in her head and to "get up and go have a coffee".

"Half the doctors don't believe it's a real illness, they believe that it's psychiatric, even though it's proven not to be, they still believe it because they don't know how to treat it," Ms Adams said.

"You get laughed at in the hospitals, doctors look at me directly and tell me it's my fault because I look after her."

Ms Adams said other doctors were at a loss to help because so little information on ME/CFS treatment was available and research money was scarce.

To combat that knowledge gap the WA ME/CFS Society support group invited Canadian doctor Byron Hyde to the state to speak on treatment options and his research into the disease.

Dr Hyde founded the Nightingale Research Foundation, dedicated to understanding and developing treatments for ME/CFS, more than 20 years ago and has written numerous books on it.

But the society's president Blake Graham said despite flyers and a newspaper advertisement just six doctors and five health professionals, like pharmacists, had indicated they would attend.

Health Minister Kim Hames was invited but said he would not be able to attend.

"Unfortunately I have a conflicting appointment that evening however I have written to Theda's partner, Blake Graham, expressing my apologies and also wishing the best for Theda's ongoing treatment," Dr Hames said.

"I would certainly encourage any doctor with a special interest in CFS to consider attending the presentation by Dr Hyde who has an extensive personal and research experience of working with patients suffering from this challenging condition."

Mr Graham said the abysmal list of attendees was quite disappointing given the calibre of the speaker and the need for doctors to get a better understanding of the disease.

"To me it's really mind-boggling that we have quite literally one of the world experts coming and lecturing for free and right on people's door step and there has been so little interest really," Mr Graham said.

"It's very disappointing because Dr Hyde is very technical and scientific in nature and his work is really oriented to doctors and not to patients."

A Health Department spokeswoman said the number of doctors and health professionals under the department was so large that it would be impossible to know if any would attend the seminar.

Dr Hyde's health professionals’ seminar runs on September 11 from 9am-1pm at 11 Aberdare Road, Nedlands.


The article originally appeared here.



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