Re: Experiences of Living with CMT Survey

[Guest guest]

Krishna,

Just wanted to let you know I completed the survey in about 5 minutes. In my

experience, I found it to be biased, and I hope you read through our Archived

Messages and current/new messages, for what's really going on with people who

have CMT. You may also want to check into the CMT Facebook pages and MDA pages

too.

Are you familiar with Dr. Vinci's article on the psychological distress of

people with CMT from 2009? You can find a pdf in our Files section.

I feel 100 people is WAY to low a group number for such a research project. With

6 million people in the world having CMT, this could be a major project if

numbers of survey participants were increased.

I would also like to know why you personally chose CMT to survey and how do you

expect this survey to 'help' people that are affected.

Gretchen

[Guest guest]

I also took the survey and found all of the " what caused my CMT " questions

disturbing and biased. I even added that to the " anything else about your CMT "

section at the end. GENETICS caused my CMT, it was nothing I or my environment

did to cause it. My actions and events in my life may have impacted the

progression of the disease, but there is certainly no way ever that it was the

cause of me having it.

Mark, NJ, 48 and lots of relatives with CMT

>

> Krishna,

>

>

> Just wanted to let you know I completed the survey in about 5 minutes. In my

experience, I found it to be biased, and I hope you read through our Archived

Messages and current/new messages, for what's really going on with people who

have CMT. You may also want to check into the CMT Facebook pages and MDA pages

too.

>

> Are you familiar with Dr. Vinci's article on the psychological distress of

people with CMT from 2009? You can find a pdf in our Files section.

>

> I feel 100 people is WAY to low a group number for such a research project.

With 6 million people in the world having CMT, this could be a major project if

numbers of survey participants were increased.

>

> I would also like to know why you personally chose CMT to survey and how do

you expect this survey to 'help' people that are affected.

>

>

> Gretchen

>

[Guest guest]

I took the survey in about 10 minute including a note to the author. I

too feel the survey doesn't address the problems we encounter and

assumes some that I don't think exist. There aren't places to really

say what is true for you.

I'm not depressed about my CMT, not at all. My dog died. Sure I've had a lousy

couple of months. I live in Canada. It's cold, dark, I experience social

isolation because I don't walk and can't get into friend's homes and I'm getting

older. I don't blame my CMT.

If anyone, I blame the architects who thinks stairs everywhere

are fine. That's why I'm a student and advocate of Universal Design

and Visitability. No place to put that little tidbit.

If you know your CMT is not your fault, and is inherited, then a

great many of the queries are irrelevant. Forgive me but it reads as

if it has been put together by a young person who doesn't really know

CMT very well and assumes that a great many people who have it don't

understand it either. I think she's wrong but the survey will bring

that to the fore.

[Guest guest]

I agree that the survey seems written by someone who is lacking a baseline

understanding of what CMT is.  I changed my mind about participating since my

responses didn't seem valid.

Lee

tlee629@...

[Guest guest]

The person may be seeking to find out if there is a basic lack of understanding

among US. However, unless he or she has a control group from the general

population, their results would be inaccurate.

Jerry Walfish

________________________________

From: Lee <tlee629@...>

Sent: Mon, March 14, 2011 12:56:07 PM

Subject: Re: Experiences of Living with CMT Survey

I agree that the survey seems written by someone who is lacking a baseline

understanding of what CMT is. I changed my mind about participating since my

responses didn't seem valid.

Lee

tlee629@...