Tuesday, September 7, 2010

Mystery disease specialist snubbed by WA doctors

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

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

"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

"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.

Details: mecfswa.org.au
* * *
There you have it -- proof that doctors are closed-minded when it comes to CFS. 
To some extent, I can understand the ego thing that they don't want to learn about it from patients, but they will not even go to a lecture by another MD that would cause them to have to acknowledge that they've been in error all these years in assuming that it's all in our heads. 
Just as one of our experts noted that CDC couldn't replicate DeFreitas' virus because "they don't want to find anything", neither do these doctors want to find anything that would cause them to have to change their opinion.

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