NIH study

[Guest guest]

Hi all

I have been reading with interest all the posts regarding this study. I sure can

feel the excitement of those that maybe will finally get a diagnosis, or help

with their chronic pain, or suggestions on how to deal with things. I think it

is wonderful that these doctors are doing this. Maybe it will help other docrors

take note and listen to their patients and know that it is not all in their

heads. I also thought it would be interesting to participate in it to find out

more about VEDS if possible, however it is impossible for me to make it down

there. The problem is not financial, but time and my anxiety would never let me

travel anywhere by myself, but the biggest reason is that everyone else needs

this study way more than I do, I have no medical issues for myself. I don't live

in constant pain (except emotionally without my son) but physically I can do

basically what I want......I work, drive, shop go out for walks clean my house

whatever. I guess what I really am saying is that perhaps it is not necessary

for me to do this even though I have the VEDS diagnosis.....it is not affecting

me at the moment. I would rather have someone who really needs to go fill that

spot. SOmetimes I even wonder why I am on this list, but I sure have " met " some

great , caring , supportive people and when I do get into a funk I just turn on

the computer and help is there.

SO thank you guys, you are truly appreciated.

Betty