OSLERSWEB.COM

You may be recieving gazillion e-mails like mine, but I wanted to thank you for
writing Osler's Web. I am in the middle of reading it and am captivated by the
historics of this nasty disease. I am also horrified by the stake holders and their
decisions to deny thousands of taxpayers the right to care, the right to dignity,
the right to compensation from insurance companies.

I have been ill since November 2008, 40 years old registered nurse.Incidentally
working with cancer patients, and I truly think I got EBV by saliva contact from a
cancer patient (spitting when he was talking to me) but try to prove that!!! I have
a hard enough time trying to prove I am sick and not fit to administer lethal doses
of chemotherapy to patients.

My family doctor will have a christmas present from me this year, I guess for
putting up with test requests, lack of results (which happens when the wrong tests
are done) and refusal to go see a psychiatrist. She will be given Osler's Web. I
hope that each day, she reads a few pages and that she begins to understand that
it's not in my head, that there are a few drugs out there to help control this
disease.

Again thank you for your careful study of what really happened, and what really went
wrong.

(anonymous)

Losing Family- Shattering the Glass Terrarium of my life

After suffering from ME/​CFS for over 18 years mostly on my own, last week was one
that shattered my already fragile life into pieces. I had never been to doctors
(other then at five years old with a cold) or had any heath problems before I got a
severe flu and for the first time I had to take off of work. I have two degrees in
Computer Science and Mathematics (cum laude). I had a wonderful life ahead of me
and I was a very normal and healthy person. I was diagnosed with EBV after having
very high fevers, stiff neck, headaches, light sensitivity and bone crushing
fatigue. I was in my twenties. After six months I was then told I had CFS.

My family never really understood what was wrong with me and they did not take CFS
serious no matter how bad I told them I was. They would say it is a syndrome. So is
Downs Syndrome.

In the last five years I have progressed to the point that I cannot walk or drive
due to muscle weakness. I began to have neurological problems about four months ago
where my left leg was giving out, slurred speech, burning pain in my soles of my
feet and hands and tingling sensations and muscle weakness. I have all of the
regular ME/​CFS symptoms but the others are new. The first neurologists thought I may
have MS, but the brain scan did not show large lesions. But the cervical spine I
did have a lesion and I forget the language but two neurologists thought I needed
neurosurgery. My parents were really worried about me for they never saw me this
bad. I have tremors and I now can only walk around the house.

My brother insisted that I see his neurologist in NY. It is a long story but the
neurologist thought I may have myositis, so I went back up only to be seen by a
Rheumatologist who met me for 20 moments of my life who told my brother and I that I
had mental problems.. My brother all along never believed I was ill so this doctor
just gave him the ammunition to destroy me with my parents who were really trying to
help me.

Just going to the doctor's office creates so much more suffering as sitting is
unbearable. I also have a speech problem where I slur my words at times. I am also
in extreme pain.

I wanted to make sure that something other then ME/​CFS was causing me not to be able
to walk and maybe I could get treatment of some kind.

Now my brother told me on the way back to the airport that this was the best two
days for he was able to observe that I was much worse in the doctor's office then
when I was at home. Yes I am better laying down at home, without all the lights in
an office and noise, etc. It does not matter if you take me to a doctor's office or
to a store; I am worse as soon as I leave the house. My brother has never been a
brother and left the house when I was around five and I lived in CA or Fl and he in
NY. So he only saw me on occasions as few as they were.

Now my mother who has been very supportive does not want to talk about what happened
and my dad said what is he to think that doctors cannot find anything wrong with me.
I have lab tests that are not normal. Even the neurologists in NY wrote that I have
a small lesion in the frontal lobe of my brain. That my EBV is active. He seemed
to really want to help me and he understood when I told him that immunoglobulin IV's
helped me.

I have been trying to see Dr. Peterson but I am told he has not asked us to call me.
I cannot walk, and I have HHV-6a, EBV, subclass IgG deficiency and other immune
markers. It does not have to be Dr. Peterson I just thought he would be the best in
dealing with neurological problems.

Losing my mother especially has shattered my world for her phone call during the day
really helps me coping. I do have a husband and I am lucky that I have him as he
takes care of me. However, I still am feeling such a deep loss. I lost my sister
to a train crash who would have been there for me as we were very close. I have
another sister who still seems to believe me.

There are no words to express what this is doing to me. I am so scared for my
future. I really need to somehow find support in strangers somehow.

I appreciate all you have done to expose the truth of what is going on with us. I
just do not see anything changing. Unless ampligen gets approved I just do not see
doctors helping us. We cannot be traveling all over the country in search for
doctors as this illness is hard enough. Why are there year waiting lists and how do
they get away with charging people for there clinical study using ampligen. They
are not doing this with HIV patients. Why can't ME/​CFS doctors hire more doctors to
see more people? Also, are my new symptomns something that others will get in time?


Again, thank you as always you have been our best support. You are not only a great
reporter but you really understand how we are suffering. Why can't a ME/​CFS doctor
create a video on how bad ME/​CFS is so that can be shown to people's families? We
really need something like this. We deserve it.

Again, Thank You,

Carol

Dear Hillary,

I read the utterly brilliant Osler's Web when I first was sick in the 1980's and
indeed, many of the docs you mentioned were people I saw. That book was the only
voice out there that told the heinous story of how the government agencies
suppressed information and diverted funds from our disease. So thank you.

Barbara

To Ms. H. Johnson - I have the original copy of Osler's Web (and the same year of
birth as your Mom). As a child, I had malaria, chicken-pox, measles and anemia. In my
50's I was 'diagnosed' with CFS and my dr.(who believed me--his wife had it) did
everything he could think of. I eventually had to take chemo for non-Hodgkins
Lymphoma, and now I have leukemia and go to MDAnderson (Houston)-no longer have
treatments. I KNOW what it is like to socially have folks almost to my face make fun
of the idea. The book was/​wasn't a revelation of how it's reacted to. I cannot
believe our medical profession is so stupid (I'm old enough to know). Not at all
surprised (at this stage) of the political stuff (and it will get worse) Thanks for
all your hard work on the book. I am convinced that CFS is connected to the anemia
factor.