I have had this iLLness since 1998, I feel I do not have the right to
post here, but to know people who have the iLLness is a wonderful
support area for me as I have yet to meet anyone here in my State, City
or online that has this horrible disease.  I wish that America's CDC
would call it ME because to me it sounds more like what I deal with.
This Dr. you sent the post out about, can the UK really make ya'll give
your medical records rather make them public?  Do you know if this is
the thinking in the US CDC as well? (Centers For Disease Control)
I thought after Mary Schweitzer spoke here from Canada to the CDC that
a drug had been found in England although experimental to help her and
she made great strides in recovery to her iLLness.
I am very sick, this has been the worst year with the iLLness since
1998.  In the fall 2005 I developed narcolepsy and it took from Sept.
until April 2006 to find a drug to keep me awake. (Provigil)  Then I
thought things would get better, we went to Alaska in June, a family
vacation to the lake in July, then
to see family over labor day weekend.  Slowly things worsened and I
developed severly painful ulcers in my mouth on my tongue and in my
nose.  I am in a hiatus now but expecting them to return at any moment
since this has been a reaccuring pattern. I also am not driving I am
homebound and have a profound sense of weakness and I just can't go
anywhere.  Once in a while I go out just to run my son to church with
my husband at the wheel, but otherwise that is it.
When it started in 1998 I had headaches that changed in a severe way,
24 hours a day 7 days a week.  After much testing, and finally being
put on medications (anti-seizures) for the headaches and requip for my
legs because I had myalgias from top to bottom and the anti-seizure did
not handle the legs, so they put me on requip and said I had
Fibromyalgia, and I kept saying to her, (my Dr. at that time) "no, I
believe it is this thing called CFIDS or CFS"  She would say no and
that I didn't have Epstein-Barr, well it lies dormant in my body
because I had mono in high school. I could still drive, go everywhere
and do much of anything I wanted to.
But now my cognitive abililties are different, it seems like a switch
turned off and won't turn back on ever again.
Do you all struggle with anything similar in your disease?  Have you
experienced the profound sense
of loss, grief and sadness that comes with it because you are not like
you used to be.?  Please I have resourses as you have in Canada, but I
need someone or many someones to say I have it and this happened to me.
 You know, support.
It is our Christmas season here, and I did not decorate for the very
first time for Christmas ever and did not go out to shop for gifts
because of the situation with the iLLness turning the lights in my
brain off.
Blessings to you by the Lord for your stand in the UK for this horrible
disease against the government of health and that horrible Dr, I
personally thank you.for your advocacy in the battle to win respect for
CFS/ME or ME/CFS.
Beauty