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The Politics of Disease
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Rik Carlson
May 12, 2015
30 years ago, 30 years, there was an outbreak of an unexplained flu in Incline
Village Nevada. Incline Village is a world class tourist destination on the shores
of Lake Tahoe. Hundreds of patients streamed into the office's of Dr. Dan
Peterson and Dr. Paul Cheney with flu-like symptoms unusual in their severity:
crushing fatgue, fever, flu, memory loss, sore throats, exacerbated symptoms
after exercise, muscle aches, headaches. It was such a profound “outbreak”
that it was reported to the CDC and they investigated. Activated Epstein Barr
Virus was a common denominator, EBV. Because Incline Village is such an
exclusive town, the media called it “Yuppie Flu”. The local Chamber of
Commerce did not want an “epidemic” and a state health officer said these
people would just as soon have EBV as a BMW and labeled them as neurotics,
difficult personalities and malingerers. The doctors were treated as a pariah on
the town, were refused service at local restaurants and their children were
taunted at school. 30 years ago.
The CDC studied the cases and because there was no known cause,
determined it to be a mass fantasy, a coordinated social hysteria and those
patients in particular to be a “sub-culture of invalids”.
Physicians who claimed it to be valid were openly ridiculed. Researchers were
denied grants, insurance companies denied claims for Chronic Epstein Barr and
medical reimbursements for drug treatments and therapies wre denied. The
numbers were growing and now across the country tens of thousands were ill. It
wasn't going away. The CDC had to act. Some called it Neurasthenia, in Japan
and Europe, Myalgic Encephalomylitis, here in the States, maybe a post viral
syndrome or a chronic viral syndrome. They chose the name chronic fatigue
syndrome. CFS because it sounded benign and gave plenty of wiggle room for
physicians and insurance companies to explore the psychiatric definition which
they did.
Dr. Robert Gallo worked for the NIH and was credited with discovering the HIV
virus. He also discovered Human Herpes Virus VI, or HHV-6 and most patients
from the Peterson/Cheney clinic tested positive for this virus. At that time the
theory went like this: If you were postive for both HIV and HHV-6 it was bad
news, your immune sytem was under-active and that usually lead to pneumonia.
However, if you tested positive for HIV but not HHV-6, you could live with it, see
Magic Johnson. Now, if you tested positive for HHV-6, but not HIV, you
presented the symptoms of CFS, because your immune system was overactive.
They called it the mirror image of AIDS. You would have thought that to
gather more attention. 30 years ago.
20 years ago it became personal. I got the flu and it never went away. My story
is in the book and the film. And the history of this organization is on our web site.
As patients, we are Type A Personalities. We work long hours. We work hard.
We work smart. We attack projects with the grip of a pit bull. We attract a
following because we lead the way. As expected, we respond to disease with the
same fervor and passion that we do all of life. There is no other option but
success, and in this case, success means full recovery.
So why is it that after 30 years, it's such a hideous struggle? Why is it that such
a significant portion of our population is so terribly misunderstood, maligned,
and belittled?
I'll tell you why.
First, because it's mostly women and we all know that women are helpless,
weak, and prone to whining. It's a pervasive attitude. I'm sorry.
Second, it's the name. A real disease has a real name, a name that casts fear:
Cancer, Typhus, Malaria, Polio, AIDS.
When I got sick, I knew it was bad. I knew that it had such a grasp on my body
that I might never recover. When you spend years flat on your face, drained of
any strength, dumb as a bucket of rocks, watching your life's assets being
dismantled through a distant fog, you suspect the worst.
It was made clear to me by a true and insightful friend, that every time we use
those three words (cfs) we lose. Every time. To convert those three words into
the ghastly lifelong disease they represent is impossible. Just by saying them,
we lose. We're disregarded as whiners, malingerers, looney-bins. Case closed.
What about Fibromyalgia? Multiple Chemical Sensitivities? Lyme Disease?
Third, it's the insurance companies. They're not prepared for an inflammation of
the brain or an obscure virus that disables for decades with no cure in sight.
They're not prepared for people who stay sick. Not on their watch. They will
never understand that money well spent could reverse the billions evaporated in
lost productivity. They will never understand that doing the right thing can be
profitable. The world is soiled by greed. As long as we are given the psychiatric
misdiagnosis, they think they win, and that's all that matters. (Deny claims and
stall, this week, this month, this year, until I get my pension.) Graft within the
political structure is not uncommon. Disease is business, but don't get me
And finally, we lose because we're fractured. The more groups there are for
whatever variation of this disease we choose, CFS, Fibro, MCS, Lyme, the more
diminished our message. When I see single flashes of activism, a card table in
the Mall, or that fantastic banner at HHS, it breaks my heart because I know the
price they paid to be “active” and how that activism gets turned against them.
Organizations like this one teeter on the edge because those at the helm have
involved health issues . The Coaltion4ME/CFS is on the right track, while
the IACFS/ME and their newly released ME/CFS Primer for Clinical Practitioners
and Consensus Manual gives more power to patients and their providers than
ever before. Kudos. The ME/CFS Human Subject Pilot Project at the University
of Vermont needs to be funded. Research we can do at our own University can
have global impact.
But first on the list of needs is respect, which we lose because of those three
awful words, don't say them. The blatant lack of respect, the sneers, the jokes
on radio and TV, all make any semblance of recovery infinitely harder. I refer to
Al Franken, who, in his previous life wrote a really thoughtless, book, and
smeared our population on Letterman and again on the Today Show or to how
cruelly Laura Hillenbrand was treated on Imus in the Morning, when they
laughed at her, scoffed behind her back. And just like that we're back to the
name thing and we lose. Lose, lose, lose. Until we have a name that strikes fear
in our heart, we'll run in circles til we're exhausted and die. Insurance
companies know this.
That we need help is an understatement. This organization has been held
together with a song and a prayer for 20 years. We have an august group of
brilliant, talented, and passionate medical professionals at our core. Dr.
Maughan, Dr. Naumann, and Dr. Friedman are the best you'll ever find in this
field. Vermont should be proud.
So,... please,
Log in to our web site. See our scholarships, our book, our film, our manuals for
patients, for families, for physicians, for school nurses, watch one of our many
videos, share this as you can, with those you know who need help. Everyone
knows someone. Let us know how you can help. Let us know which project
deserves your support.
Thank you for attending today.