Thursday, June 2, 2011

30 Years On

This Sunday marks the 30th anniversary of the first reported case of AIDS.
In that time, AIDS has gone from a death sentence to merely a chronic condition thanks to proper research and pharmaceutical therapy.
In 3 years will be the 30th anniversary of the Lyndonville and Incline Village CFS outbreaks. 
In that time, it's gone from a life sentence (often served in solitary confinement) to ... a life sentence (often served in solitary confinement).
Many patients are offered nothing but antidepressants.  When you report that the first one doesn't help (or makes you sicker), you're offered another and another.  Rather than accepting that perhaps his diagnosis is wrong, the doctor will reassure you that the reason there are 300+ varieties of antidepressants on the market is because the same one doesn't work for every person.  And some doctors are determined to try all 300+ antidepressants (i.e., 30 years of experimentation) before they will admit that maybe the problem is not depression and try something else.  Meanwhile, the patient has suffered permanent physical damage from the decades of medical incompetence.
The only medication that seems to work miracles for CFS patients, Ampligen, has been stuck in FDA limbo for decades ... which boils down to politics: the FDA will not approve an anti-viral treatment for a disease CDC says is purely psychiatric.
Dr. Mark Loveless, an infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, proclaimed that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death."
Dr. Nancy Klimas, who also treats both illnesses, states: "My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.  I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."
Why?  AIDS patients were healthier longer after infection and had a circle of physically able friends who were willing to do something pro-active.  CFS patients are often disabled from the first day and their friends and family are often not supportive, accusing them of laziness or depression, rather than accepting that this is a physical illness.  Therefore, we're not able to stage huge demonstrations ourselves, because we're home in bed, and our friends and family are confused because we "don't look sick" and therefore they're not particularly motivated to hold a demonstration, either.
Another difference: men were at the forefront of the AIDS epidemic; most CFS patients are female.  When I first got sick, my boss had similar symptoms.  His doctor sent him all over the state for more and better tests with the goal of keeping him well enough to work.  My doctor did one round of basic blood tests and when they came back normal (because he hadn't done the right tests), told me to grow a backbone "tell your husband you don't want to work, you want to be a housewife".  He never did get it that I wanted to go to work, I had no desire to "stay home and watch soap operas"; that's what his wife wanted to do, therefore that's what every woman wanted to do.
No, most of us physically can't attend a protest march, and we would have to hold a sleep-in rather than a sit-in, but we now have something the first AIDS patients didn't: the internet.  We don't have to spend money on long-distance calls or postage -- we can e-mail for free.  Write e-mails to the government agencies, elected officials, and media.  When you see something that proves CFS is physical, not psychological, send it to them.  Eventually, the barrage will get their attention.
Mind your manners -- there's a way to be forceful and polite at the same time.  Hysterical rantings laced with profanity serve only to prove the point that we are whackjobs rather than physically ill.
Let's not reach our 30th anniversary having made almost no progress from Day One.

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