Re: info cfs?/Co-Cure list-docs-Peggy and all!

[Guest guest]

Peggy,

I would REALLY love it if we could do this! Even if it took us some

time to do it since I know some of us at any given time aren't able

to write alot or organize our thoughts too well because we're in a

bad place. Maybe we could just start a list via one of the links

on the left side of messages page that's most appropriate, like

" Database " or " Files " or whatever works best. Then we could ask

those able to do so now to list docs, city/state, their specialties,

their tx. approaches and patients experiences with them w/ contact

info. and any websites connected to them.

Then every couple of weeks we could post a reminder for any new or

current members who hadn't had a chance to post their docs on the

list to do so as soon as able, this could be invaluable.

For instance, I'm looking for an endo. that's aware or teachable re:

CFIDS and how it uniquely affects neuro-endo issues. Haven't found

one, REALLY NEED ONE.

Calling all computer wizards-how could we start this in best fashion?

Easily accessible and easy to input our info.??

If those on the list want to have this resource, let me know and I'll

try to help(along w/ the computer wizards we have in this group)get

it started. This would be invaluable for us and all new members to

this group. I vote YES! What a great idea, Peggy! Hope others are

interested as well.

If interested in the group starting a good doc list, bachchannel me

at nightowl202@.... Thanks and best of health to all!

K.

> ,

>

> I agree with you - I am so glad that list exists but some of the

doctors

> there are a little sketchy, and many seem to be fibromyalgia-

oriented. I

> think a lot of fibro doctors think they know about CFIDS but

actually don't -

> they know about fibro-related fatigue.

>

> I wonder if there is any way THIS group could compile its own good

doctors

> list? I think with all of our collective experience, we could give

pretty

> detailed run-downs on a huge number of doctors out there, which

could be very

> useful to seeking people.

>

> Anyone interested in this?

>

> Peggy

>

> In a message dated 12/29/01 4:03:32 AM, @y...

> writes:

>

> << Message: 8

> Date: Fri, 28 Dec 2001 13:12:12 -0600

> From: " " <lindaj@h...>

> Subject: Re: Re: where can i get lastest info on cfs?

>

> the co-cure list of " good " cfs doctors includes doctors that don't

treat

> CFS. The doctor listed for my state is a rheumetologist, and the

one that

> originally diagnosed me with FM, and he told me that he does not

diagnose or

> treat CFS patients. (And he didn't seem to have any clue who

would.) And his

> basic treatment for FM patients is to relax, exercise, and learn to

just

> ignore the pain. He doesn't believe in medications or supplements

of any

> kind for the treatment of FM, and treats it as though it is just an

> emotional thing. When I originally called to set up the

appointment, I asked

> the receptionist if he approved of alternative medical treatments,

and she

> said he did. His " approved " alternative treatments seem to be

limited to

> yoga classes, water aerobics, relaxation therapy, and join a

support group.

> A long time ago I sent an e-mail to co-cure informing them that

they need to

> specify what the doctors listed will treat, but they never made any

changes.

> It makes me warey of any of the other doctors listed. Unless I hear

of

> someone else who has personally gone to any of these doctors and

their

> experiences, I don't consider them " good " cfs doctors.

>

>

> lindaj@h...

> >>

[Guest guest]

Whoever decides to do this list, please contact me, i have some valuable

input for you.

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.