Drs was Re: Hi Again

[Guest guest]

Alia wrote: The good thing about this doc is he'll give me what I ask for.

The bad is he doesn't come up w/ anything on his own and is just a GP.

Mine isn't 'just a GP' but a specialist in fatigue disorders - a believer in

ME, even - and still doesn't come up with anything on her own besides 'rest

& nutrition'. Since I was already eating very close to her recommendations,

having figured that out on my own 10 years ago, her main contributions was

to reinforce for my family the importance of me resting instead of

continuing to do housework, climb stairs etc. And that was only 10% of my

improvement, after which I was stuck again. Every other improvement I've had

'under her care' was from my own trolling of ME/CFS boards, newsletters, and

PubMed studies, analyzing and synthesizing as much as possible with a brain

deader than ten doornails.

She's resistant to every treatment or avenue or referral I come up with from

my extensive scouring of available research, and only grudgingly allows that

something might have helped me 'for unexplained reasons' a few months after

I start it on my own and see a consistent improvement. Her idea of ME is

that, if I live the perfect 'treatment life' consisting of lying still,

surrounded by pillows, cushioned from any potentially stressful situation

involving family, work, or even enjoyment, with my entire house at the

perfect temperature, and eating lots of high-quality protein, my brain will

eventually reset the switch that is messing up my autonomic nervous system

and I'll be fine again... as long as I continue to avoid over-exertion,

heat, cold, stress, or hunger.

And yet she's my best health care option in a major Canadian city with over

a million residents (at least she believes I'm really sick). So it's not

just those of you with options limited by geography or insurance who have

trouble getting quality care.

Jayna

(grumpy at the whole ME/CFS war that is keeping patients on both sides of

the divide from getting a coherent treatment plan that addresses BOTH the

brain and body issues)