Re: Our site/on search engines

[Guest guest]

You are correct about being listed as well as eGroups. What I referred to

is that a vast majority of people seeking information about CMT would not be

aware of or egroups. If you search Charcot-Marie-Tooth Disease, CMT,

HNPP, etc it does not show up with any engine I tried, including Web Ferret and

dogpile. You must search for and those that do not know about would

not know to.enter in a search. A page with META tags would show up.

Therefore, as I clearly said seconding the suggestion that a page be made that

was public that would refer people to the group and possible contain other links

to valuable resources such as CMTA, CMTI, MDA etc.

I have, in no way said that the group should be changed in any way, other

than the fact that I personally think it would be great if the wealth of

information was available to others than those on the list. Many people do not

have net access and many rely on computers at libraries etc to find information.

They may not have an email and could not join if they wanted to. I think it

would be great if a medical student seeking to learn more about CMT had access

to the real life stories rather than depending on texts that never mention some

of our problems. But those are beside the point. The list is excellent and

what I have mentioned is only making the list and CMT better known. What is

wrong with a sign that says, " Excellent online CMT Support group and information

sources may be found at : "

I have personally recommended the group to the Patient Service Coordinator with

MDA for my area. (By phone of course since her office is about 300 miles away

and I have never met anyone from MDA other than the area person in charge of

fund raising.)

----- Original Message -----

From: Maxwell

egroups

Sent: Saturday, December 30, 2000 06:40 PM

Subject: [] Our site/on search engines

Infoseek has both and eGROUPS listed.

eGroups

eGroups - Free, easy email groups

local/ew/ew121399.html

. DIRECT email community

This Web Forum is not moderated in any sense. Anyone on the Internet can post

articles or reply to previously posted articles, and they may do so anonymously.

Therefore, the opinions ...

http://dem0nmac.mgh.harvard.edu/forum_2/CharcotMa...

Go.com also has them listed.

Alta-Vista has egroups listed several times under CMT and they have the CMT

chatonline listed too. They have egroups: listed.

Northern Lights search has both eGroups and listed.

is out there and easy to find when searching info on CMT. This is just

a sample of the search engines its found on. Of course more info is needed on

CMT so the more the better. ~>Becky M.

[Guest guest]

Lamar here,

The below URL is out of date. The current one is:\

http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics & forum\

=Charcot+Marie+Tooth & number=17 & DaysPrune=20 & LastLogin=

----- Original Message -----

From: Maxwell

egroups

Sent: Saturday, December 30, 2000 06:40 PM

Subject: [] Our site/on search engines

. DIRECT email community

This Web Forum is not moderated in any sense. Anyone on the Internet can post

articles or reply to previously posted articles, and they may do so anonymously.

Therefore, the opinions ...

http://dem0nmac.mgh.harvard.edu/forum_2/CharcotMa...

[Guest guest]

-----Original Message-----

From: Lamar son <lls@...>

egroups <egroups>

Date: Saturday, December 30, 2000 8:24 PM

Subject: Re: [] Our site/on search engines

>You are correct about being listed as well as eGroups. What I

referred to is that a vast majority of people seeking information about CMT

would not be aware of or egroups. If you search Charcot-Marie-Tooth

Disease, CMT, HNPP, etc it does not show up with any engine I tried,

including Web Ferret and dogpile.

>>>Lamar, thats how I found and eGroups! I typed in

Charcot-Marie-Tooth! On all the search engines I listed in my former

post. Don't know why your having trouble finding it. It may take

several pages to go thru to come across it, but its there and anyone seeking

information would keep looking and reading the sites listed on the search

engine I would hope so, I did when I wanted info, and I assume others would

to and not just read the first couple of sites and say wow know I knnow all

I need to know about CMT, no need to look farther! LOL...

I agree more infor and access to info on CMT is needed, as I also said

in an earlier post on this subject. But is on the search engines,

and no you don't have to type in !!!! <As you stated. You just have

to have a little patience, ~>Becky M.