Letter #4 in reply to "You ain't crazy. It might be Chronic Fatigue Syndrome

Letter #4 in reply to "You ain't crazy. It might be Chronic Fatigue Syndrome" in Frost Illustrated, Fort Wayne, Indiana, USA, 8 July 2008

I'm reposting Mary Schweitzer's letter here, as the link is a bit
confusing~~Liz

Thank you for taking the disease so misnamed, "Chronic Fatigue
Syndrome," more seriously than the media normally does. I have been
fighting this illness for two decades, however, and, regrettably, at
this stage of the game everything is NOT going to be all right for
those who have it.

I have been in cutting edge studies that show I have an abnormal
immune
defect in the body's biochemical antiviral pathway which makes it
extremely difficult to fend off viruses, and I also have a low
natural
killer cell count. I have chronically recurring Epstein-Barr, and a
vicious virus originally discovered in AIDS patients called HHV-6A
(Human Herpesvirus 6, Variant A), which gave me muscle pain,
encephalitis, and significant CNS disruption - in other words,
Myalgic
Encephalomyelitis, which was what the disease was called in Britain
before the U.S. NIH came up with the name "chronic fatigue syndrome"
(at the time believing it was chronic Epstein-Barr virus). A
scientific committee voted (not unamimously) for the new name, but it
was promoted by the head of infectious diseases at NIH at the time.

HHV-6, Variant B, causes roseola and is very common. It is not
possible
at the moment for commercial laboratories to distinguish between the
variants, so there can be a lot of confusion. However, an active
case
of HHV-6 in an adult usually means they have Variant A.

The disease caused terrible pain in addition to the muscle aches:
migraine-level headaches, and constant severe pain behind my eyes and
in the back of my neck. I had trouble understanding what was said to
me, and trouble saying what I meant - I would often use an entirely
wrong word, such as "map" for "tablecloth". I once poured an entire
cup of coffee into a silverware drawer convinced it was a cup. I had
ataxia, which made it difficult to walk and impossible to perform
normal functions like loading a dishwasher - I would slam one glass
unto another, unable to gauge the distance properly. Eventually I
became too weak to walk even a few feet. I only left the house if
someone in the family took me in a wheelchair, which they had to
push,
and I was mostly bedridden. Years later, when I was much better, I
still scored so low on an oxygen-reuptake treadmill test that I would
be considered permanently disabled on that basis alone.

I benefitted from an experimental drug that was both an antiviral and
an immune modulator, "Ampligen," which is unfortunately still in
Phase
III development. In six months, my biomarkers were gone. I could
read
again, walk again (though slowly), drive a car again. I cannot
explain
the sheer joy of being able to walk on a beach when you thought you
never would again. And I danced at my son's wedding that August.

The cost to my family for that one drug,which required twice weekly
infusions, was $20,000 in cash. I lost the drug in February. The
last
time I had to go off it,I did well for a year, and then relapsed
badly.
I am not looking forward to a repeat of that relapse, and hope that
perhaps a combination of an antiviral such as Valcyte (being used at
Stanford by Robert Montoya) and perhaps IM gamma globulin can help me
stave off a reappearance of HHV-6A and the 37kDa Rnase-L immune
defect.

I am fortunate in having been a college professor, married to a
college
professor, and therefore familiar with the means to find out what
testing, and what experimental drugs, might be available to me. It
took four years from my first collapse in my office before I finally
tested positive for something, however. And I was lucky that
Ampligen
worked for me, and that my family was willing (and able) to sacrifice
so we could pay for it.

Think about what was said in your own article: only 15% (10% by some
studies) of patients have any idea what is wrong with them. The vast
majority of those with a diagnosis are white and upper middle class.
That tells you something about who is not being diagnosd. I live
near
a major east coast city and there is no doctor in driving distance
who
understands my disease. Nobody in public clinics understands it.

I was sicker than most people who have it - I seemed to have a
progressive form, what some British patients call a "twenty-five
percenter" because they believe 25 percent have the disease that
badly. But imagine what my life would have been like without my
family, and without access to medical care. For me, it was not a
matter of finding work difficult - even working a cash register at
McDonald's would have been impossible. I know people with the
disease
who had to live on the streets for a time - I am certain there must
be
more. I used to have blackouts - what happens to a person who has
blackouts but nobody believes there is anything wrong wih them? What
happens to people as sick as I was, without medical care or a family
to
take care of them?

Three years ago, the 23-year-old son of a dear friend died in his
sleep. He had been diagnosed with chronic fatigue syndrome since
puberty. But the autopsy showed that he died of a longstanding viral
infestation - he died of myocarditis. There have been other deaths.
The CDC simply change the diagnosis when one is brought to their
attention.

Ultimately, Chronic Fatigue Syndrome is a misdiagnosis. I have an
abnormal immune system and am beset with disabling viruses, and I
have
the biomarkers to prove it. Other people diagnosed with CFS may have
different medical problems - but they are all serious. In bundling
them all together unto a vague concept of tiredness, the CDC has done
us all a great disservice - and in the process, endangered the health
of the nation. A million people have CFS according to the best
independent study - and many of us were contageous at some point in
the
disease. The name tells you nothing - chronic fatigue on this level
is
also part of congestive heart failure, tuberculosis, hepatitis - most
serious diseases. It did lead me to scientists working on biomarkers
and treatments, but for most of the public the name has prevented
appropriate diagnosis and treatment.

Thank you again for bringing this heartbreaking disease to the
public's
attention.

Mary Schweitzer