Tuesday, September 21, 2010

The Awful Disease Washington Forgot

The Awful Disease Washington Forgot

By Llewellyn King
Published September 21, 2010 – 11:32 am

In the end, as with so much else, the fight against disease leads to
Washington. There are big diseases with big lobbies, like AIDS,
Alzheimer's, cancer, diabetes and heart. Their millions of sufferers
have associations and lobbies to push for federal research money and
to shape its expenditure. Most have their celebrity backers, like
Elizabeth Taylor for AIDS, Jerry Lewis for muscular dystrophy, and
Mary Tyler Moore for diabetes.

Big lobbies mean big federal dollars, the attention of the National
Institutes of Health in Bethesda, Md., and the Centers for Disease
Control in Atlanta. If the disease is the kind for which a single or
series of silver bullets can produce a cure, Big Pharma comes in with
big funding, in the hope that it can develop a lucrative line of
medicines, patentable for long-term profits.

Yet there is a vast archipelago of diseases as cruel in their impact,
horrible to bear and crying out for research that is not sporadic,
underfunded or, through ignorance, misdirected.

One such is Chronic Fatigue Syndrome (CFS), a name so gentle that it belies the ghastliness of this affliction. Sufferers accuse the U.S. government, abetted by other governments, of choosing this name over the older and more commanding name, myalgic encephalomyelitis.

CFS is not about a name game. It is about debilitation lasting
decades, essentially from inception to death. It is about years of
lost living, terrible joint pain and total collapse, as the immune
system more or less shuts down. It is like some great constricting
snake that denies its victims the final convulsion.

Enter Sen. Harry Reid (D-Nev.). While he is not generally regarded as
a man on a horse these days, to CFS sufferers he is a figure of hope.
He has stood up for CFS research.

This is not because the Senate majority leader sought to know a lot
about a hard-to-understand and terrible affliction, but because CFS
was found in two clusters in his home state. The largest outbreak was
at Incline Village, Nev. In New York state, there is a cluster too.

In the 1980s government scientists looked at these clusters, but
refused to accord them the respect the suffering deserves. It was then
that the name was changed; "fatigue" was less politically incendiary
than myalgic encephalomyelitis.

Incline Village is significant because it shows that CFS is
infectious, or that it has environmental causes. The thinking is that
while clearly not having a strong transmission path, it does happen.

Recently a sufferer in England wrote to The Daily Mail, saying that
her husband, who had cared for her for nearly 20 years, had become
infected. This is particularly serious in England, where the medical
establishment has insisted on treating the disease as a psychological
disorder, despite recent research suggesting strongly that it is
retrovirus XMRV.

Now, at last, two world-famous pathogen hunters, Anthony Fauci of NIH,
previously seen as a debunker of CFS science, and Ian Lipkin, a
celebrity pathogen hunter, are heading a major safari into the dark
world of retroviruses.

For the first time, the loose global network of sufferers–nobody knows
how many there are in the world, but in the United States there could
be as many as 800,000—are beginning to apply political pressure.

Their plight is pitiable. The full horror of the disease is described
in a paper by Deborah Waroff, a gifted New York writer who was
stricken in July 1989.
An energetic cyclist, skier, squash and tennis
player, Waroff wrote in a paper for a Washington conference:

"My sickness began with a flu-like illness. After a week, thinking I
was pretty much well, I went back to my ordinary activities, like
tennis and my biking. A week later, I was sick again. This repeated
several times that summer until I soon got to a point where I was
never well again. I had classic symptoms. After a little activity I
would just collapse, totally fold up. I also had symptoms like fevers,
dizziness, upset tummy, swollen lymph glands and a new type of
frequent headache. I had cognitive problems embarrassingly often,
including dysphasia—putting the wrong words in sentences. I was often
too weak to talk on the phone, or after five minutes of talking I
would fold."

In 2003, things got worse. But two years later, Waroff regained some
of her life through the controversial treatment of ozone therapy. This
treatment cannot be prescribed in most states. Allowed in New York, it
is hard to come by and expensive. Some other countries, particularly
Canada, have been more committed to fighting CFS and the use of ozone

Harry Reid, and others, there is more work to be done.

In 1997 Llewellyn King launched "White House Chronicle" in Washington,
D.C., as a radio companion to White House Weekly, part of his King
Publishing group of quality newsletters. He also became host and
executive producer of the program.
Soon after its launch, King and director Michael Marlow interested
WHUT-TV, Channel 32,  a PBS station in Washington, D.C., in carrying
"White House Chronicle."
"Our aim was to look at the news with a good sense of fun, and to
bring to television gifted journalists whose bylines, or voices, were
more familiar to the public than their faces," said King.
In this "White House Chronicle" has succeeded enormously, introducing
more than 300 new faces to television—some of whom have gone to be
broadcast fixtures.

No comments: