Where is the Massive Gay Chronic Fatigue Syndrome Epidemic?

By Charles Ortleb

While AIDS has dominated the medical news for the last
two decades, another potentially major epidemic which
the media has generally ignored or minimized, has
grown exponentially. Originally mocked as "Yuppie
Flu," the name "Chronic Fatigue Syndrome (CFS)"
eventually evolved into what is now known as "Chronic
Fatigue and Immune Dysfunction Sydrome (CFIDS)."

The Centers for Disease Control and the National
Institutes of Health (for very mysterious reasons)
have been slow to respond to the potentially
catastrophic epidemic of CFIDS which began to manifest
itself at the same time as AIDS. Given that there have
been many reports of CFIDS breaking out in families,
schools, and communities, there is little doubt among
serious observers that it is contagious. If this is
so, why is it not spreading like wildfire in the gay
community? What biological wall around the gay
community has prevented CFIDS from being a major gay
health problem?

Neenyah Ostrom, who reported on CFIDS for a decade at
"New York Native," has written three books giving a
detailed history of the research on CFIDS. She has
reported on a long list of symptoms and immune
aberrations have been found in Chronic Fatigue
Syndrome; virtually all of them can also be found in
AIDS patients. These include problems with T-cells,
natural killer cells, B-cells, and monocytes. There
are serious neurological, digestive and cardiac
symptoms that AIDS and CFIDS share. Where are all the
gay men with the often serious CFIDS problems? Do they
have some special immunological protection against
CFIDS? Or is it that every gay person who has AIDS
also has CFIDS? How does that work? How do doctors
treat CFIDS in an AIDS patient? How come we never read
anything about that?

The medical literature is full of suggestions that, at
the very least, CFIDS is AIDS-like. Some research
suggests that an even stronger statement about its
relationship to AIDS could be made. Nancy Klimas, one
of the pioneering CFS researchers, led a team of
scientists who concluded in 1990 that Chronic Fatigue
Syndrome could be considered "a form of acquired
immunodeficiency." Paul Cheney, one of the first
medical doctors to look closely at the epidemic of
CFS, has referred to it as "AIDS minor." Others have
somewhat bizarrely called it an epidemic of something
that could be called the "mirror-image of AIDS." Well,
what about the gay community? Where is the epidemic of
the "mirror image of AIDS" in the AIDS-besieged gay
community? What is the difference between a gay person
with AIDS and a gay person with "the mirror-image of
AIDS." I bet that virtually no members of the gay
community are aware that there could be thousands of
members of their community with the contagious "mirror
image of AIDS."

Saying that CFIDS is not a fatal condition and doesn't
deserve any serious attention is not really a
fact-based statement. A number of people with CFIDS do
seem to have died of complications of their
conditions. A Massachusetts-based organization for
CFIDS patients has a page of obituaries in every issue
of their newsletter and many of the deceased people
they report on seem to have died from problems related
to their CFIDS. When was the last time you heard of a
gay person dying of complications of CFIDS? And even
though it may not always be fatal, many CFIDS patients
describe their lives as living hells. Why do we not
read a steady stream of stories in gay publications
about gay people coping with CFIDS?

Some estimates of the number of people suffering from
CFIDS in the United States go as high as 14 million.
If we use the 5% number which is often used to
estimate the number of gay people in America, where
are the 700,000 cases of CFIDS in the gay community?
How about just 100,000? That should still be a
noticeable blip on the medical radar screen.

The gay community has been living under a medical
microscope for two decades. If there is a major
contagious epidemic that is AIDS-like, one would think
that there would be all kinds of studies of this
AIDS-like epidemic in the gay community. Some people
seem to have made careers out of studying the
illnesses of gay people. And yet one never hears of
public health warnings about the transmission of CFIDS
in the gay community. There are no gay CFIDS
commissions, no gay CFIDS ribbons, no gay CFIDS subway
posters, no GAY CFIDS benefits, no CFIDS quilts.

If the worst estimate of CFIDS are accurate, it would
seem reasonable to suggest that for every gay AIDS
patient a gay doctor has in his practice, he should
have one or two gay CFIDS patients. And given the
similarity of their symptoms, how does the doctor keep
his patients straight? It is theoretically possible
that a new AIDS patient will have more T-cells than an
old CFIDS patient. If a gay person has the symptoms
and immune abnormalities of CFIDS which look just like
the symptoms and immune abnormalities of AIDS, and
tests negative for HIV, is he given a clean bill of
health? And why are gay doctors not warning the gay
community about the possibility of contracting CFIDS
and giving it to others? Gay people are issued every
other imaginable kind of medical and lifestyle
warning. Why none for CFIDS?

Are we supposed to believe that the gay community is
somehow miraculously immune to CFIDS? That would
certainly be a fascinating finding. And perhaps a
bogus one too. There is a far more parsimonious
explanation for why we don't hear about a massive
CFIDS epidemic in the gay community. Let's just say
for now that it is very curious that most CFIDS
patients tend to be neither gay nor Black while most
AIDS patients tend to be gay or Black or both. Nothing
political is going on here, right?

Gay men are told that the key to protecting their
immune system is knowing the HIV antibody status of
their partners. But what if their partners have CFIDS?

Why are gay men and lesbians not warned to ask the
about the CFIDS status of their partners, and not
urged to inform their partners if they have any CFIDS
symptoms? For that matter, given that CFIDS has been
presented by research an an essentially heterosexual
AIDS-like illness, why are heterosexuals not warned
about transmitting or contracting CFIDS? Where are
CFIDS warning posters in heterosexual bars?

Needless to say, I think there is a Pandora's Box of a
story here. It is one that could lead to a change in
the way we look at AIDS and CFIDS. It might even lead
to a major medical and scientific paradigm shift.

But for the time being, can someone just answer this
simple question: where is the major epidemic of
Chronic Fatigue Syndrome in the gay community?