Re: Kudos to you/XMRV

[Guest guest]

Very well said ladies!

Kudos to you!

From:

Jeannie Bonetpels <gemstar727@...>

To:

Date:

08/24/2010 01:38 PM

Subject:

Re: [ ] Re: XMRV

Sent by:

Hi Leann,

Very well said! Thank you for posting that and coming out of the shadow.

I

used to lurk, but have become my best health advocate. I have been sick

for 18

years and at first it was so difficult (no internet to find out

information),

but now with the internet there is no limit to what you can learn.

I have lost my 20 year marriage, my job and a few times almost my life. I

am

here today because people like you show support and help others, either by

your

views or advice or just by being there. This is the most lonely illness

that I

wouldn't wish on anyone.

I'm sorry you are sick, but maybe just maybe within a couple of years at

most,

we will be feeling better. I was told there was no healing or cure from

this

illness, I never believed it and I never will - guess it's that gut

feeling

again.

Well wishes to you Leann,

Jeannie

________________________________

From: Leann <leann_sweeney@...>

Sent: Tue, August 24, 2010 7:00:15 AM

Subject: [ ] Re: XMRV

I generally lurk on this list, but I have Lyme/fibro/CFS as well. This

retrovirus news is a huge step forward for us in many ways. I can best

illustrate what I mean by telling a story about schizophrenia. When I was

a

young nurse working with psych patients, I saw lots of schizophrenics. At

the

time, it was considered a purely mental illness NOT the severe

neurological

illness we now know it is. But I knew as I watched patient after patient,

with

different and unique delusions, yes, but who in many many other respects

looked

so much alike, that these people were suffering from the same

physiologically

based disorder. In my mind I was saying, " There's something much bigger

than

'mother issues' going on here. "

It is the same for the invisible fatigue based illnesses. Yes, the blood

tests,

the symptoms, the treatments that offer some relief are as unique as each

individual (thank God for andrographis), but I KNOW that all of this comes

from

the same root problem. We have now moved from " yuppie disease " to " YIKES!

This

could be serious. It's in the blood banks now. " That gives me hope that

intense

attention will be paid to the illnesses that have stolen our lives and

have

caused us so much heartache because we are looked upon like those

schizophrenics

once were.

We are not crazy, there is a reason why we are sick--but it is very

complicated.

We are dealing with the brain, after all. So listen to your heart and

believe

that someone, somewhere will now have enough research money to find the

answer--and treatments that will work for ALL of us.

Leann Sweeney

www.leannsweeney.com