Where is the Massive Gay Chronic Fatigue Syndrome Epidemic? Where is the HHV-6A

[Guest guest]

Intriguing & interesting questions.

blessings

Shan

A Question for Dr. Joseph Brewer

http://hhv6.blogspot.com/2005_07_08_hhv6_archive.html

 

Dr. Joseph Brewer has offered an interesting paradigm for Chronic Fatigue

Syndrome as a kind of variable HHV-6A Syndrome. Click here for an explanation of

the paradigm: http://www.plazamedicine.com/hhv6/hhv6_1.html

 

Here's our question.

 

Where is the HHV-6A Syndrome epidemic in the gay community?

 

HHV-6A is transmitted in a number of ways, including sexually. One would

expect there to be a major epidemic in the gay community. So where is it?

 

This rhetorical question was addressed a few years ago (in a slightly

different way) in the Op-ed piece below.

 

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 incidence is 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--or more--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 CFI

DS 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 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?