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Re: NIH study/Betty

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Betty --

If you go, perhaps we could arrange to be there at the same time - two VEDSer's

at once, what would they ever do?????? LOL!!!!!

Please think about it,

Love, Patti

NIH study

> 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

>

>

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