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From Spring 2009 Forum

Don't get too excited about the title of this article. Yes, March is "National Chronic Fatigue Syndrome Awareness Month" according the DHHS's Offce of Women's Health. And what did they do last year to promote this? Well, if this year is anything like last March, they'll give grants to sponsor a lecture on "Women and Tobacco Use: Does Gender Matter?" at Harvard a talk on "Women's Health" in San Francisco, and even a meeting on "Women and Bleeding Disorders" at UCLA. What has any of that got to do with "CFS"? Not a thing. But just naming March as the awareness month for CFS is their way of pretending they care.

When "CFS" was put under the Office of Women's Health (OWH), many objected. Why? There are many of us who don't have a vagina who are victims of this illness. Sure, it has been found to affect 522 females versus just 191 males per 100,000 but that's no reason for it to be put under the OWH. Women get AIDS, too, but AIDS isn't under the OWH nor should it be. There was an uproar when it was first placed here by many and the OWH explained that it didn't just address women's problems at all. OK, let me quote the OWH: "The Offce on Women's Health in the U. S. Department of Health and Human Services (HHS) was established in 1991 to improve women's health. We have expanded that charge to include girls:' it doesn't mention men or boys. So why is my illness represented there? We haven't received any good answers for this and probably never will. It's just another way to downgrade a serious disease. Everyone knows women don't get a fair shake in this world and putting CFS under the OWH makes this a woman's illness. Of course, the OWH, when first told that, said, "No, no" because they didn't just represent women. Huh? Read their own words again.

When the outbreaks were first occurring and physicians were seeking federal help in the early 1980's, the NIH began to look at it and named it Chronic Epstein-Barr Virus (CEBV). it wasn't under the OWH then. In fact, they put it under the Department of Defense. Why? We never got an answer. The NIH spent a lot of money trying to prove it was a form of depression but that was soundly disproven. In short time, it was even proven that Epstein-Barr was not the cause. Angry and embarrassed, the NIH handed it to the CDC who changed the name to "CFS" and proceeded to make this women's illness into a mental illness. Their first criteria (1988 Holmes) didn't work. Physicians were still diagnosing people with "CFS" who had myalgic encephalomyelitis. So they came out with another diagnosis that was less strict (1994 Fukuda). Physicians still diagnosed ME patients. The Empirical Definition stopped that cold in 2005 (BMC Medzcine) using 3 psychological tests. But they had already removed ME from their diagnostic code. So what do patients have that come down with CEBV/CFIDS/ME today?

When we were first put under the Office of Women's Health years ago, there has been one good article that was put on their website about "CFS" in 2003. It was written by a "Guest Editor of the month" and was by a volunteer from the National CFIDS Foundation. It said there was objective evidence of central nervous system, immune, endocrine, cardiovascular, and autonomic nervous system abnormalities which point to it being "a biological, not psychologically determined" illness and went on to name the proven abnormalities. It also said "the name is not only completely misleading and inadequate but it also carries a negative stigma with medical professionals and the general public" and that "myalgic encephalomyelitis (M.E.) is a more specific and appropriate diagnosis" and it went on to describe just what ME was. Whoops! They no longer have that article on their website. In fact, they no longer offer it. You can get a copy from the NCF, but don't expect one from the OWH. After all, the new definition is not M.E. The NIH admits it isn't. The CDC admits it isn't.

Had enough? So have I. The OWH says March is our "Awareness Month" but we don't have "CFS" and we no longer can have M.E. Years before the OWH declared March "CFS Awareness", the NCF wrote up a declaration to have May 12th the Awareness Day. They sent it to President Clinton. When an aide saw it, he replied they only consider legitimate reasons for designating an awareness day. He, like the general public, thought the name the CDC gave to us was a joke. So is the NCF doing anything for March's "Awareness Month"? I think they'll leave that up to the CAA since they're the only group representing "CFS". May 12th is the international awareness day that began with RESCIND, Inc. (gasp, the head of RESCIND is another male with a women's illness!). I'll do my part in May Meanwhile, I'll just wait for the NCF to finish funding what will finally bring out the truth about this illness. I wonder, though, what our country will call our "subset" of CFS then!

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