HAPPY (?) ANNIVERSARY TO ME

20 years ago today, I got my diagnosis.

Who would have ever believed that two decades later, we'd still be waiting for an FDA-approved treatment?  That there would be no cure?  That CDC would have done almost nothing toward finding the real cause of the problem?

Instead, CDC has spent the past 20 years obfuscating.  When they couldn't make the original patient cohort provide the test results that they wanted (proving we were just depressed), they re-wrote the criteria so that they could do research on people who really were depressed, and then pass off their depression-caused fatigue as the same thing as our viral-onset fatigue.

Because the research pools were polluted with people with fatigue from every cause under the sun, they couldn't find a common denominator.  However, as a long-time CFS researcher observed about their failure to duplicate Elaine DeFreitas' viral research (because they refused to follow the same protocols), "they don't WANT to find anything."

Like everything else in Washington, the answer is money and politics.  That soon after the AIDS virus, CDC didn't want to admit they had another incurable virus on their hands.  And, since CFS patients weren't dying, they would collect disability benefits for a long time, which was not acceptable to the insurance lobby.  However, if they could portray CFS as mere depression, under many disability policies there's a two-year limit on benefits for mental illness, and if they could portray it as hypochondria, then there would be no benefits due at all.

Despite a Social Security Department ruling saying that CFS is a "medically determinable illness" and that it is physical in origin, my first SSDI judge thought it could be cured with counseling and anti-depressants, and denied my application because I wasn't getting either (both of which have repeatedly been proven useless against CFS).  The second judge has ignored what the Court of Appeal has said about the disabling nature of CFS, what they have said about the limits of what accommodations ADA requires to be provided, and continues to insist that with my qualifications, some firm would be very happy to hire me and give me accommodations that are far in excess of what the Court of Appeal has said ADA requires.

At this point, I expected to be cured.  I certainly didn't expect to be fighting a losing battle for disability benefits, and haveCDC's website saying that it's not necessary to do the tests which would be abnormal.  Yet, here we are -- and some people have been fighting the battle even longer than I have -- still basically at the same point that we were 20 years ago.  Still sick, still disrespected, still having to prove every damn day to some uninformed person (including doctors!) that the problem isn't depression or laziness, it's documentable immune and neurological abnormalities caused by a virus.

Tags: CFS, CDC, anniversary, immune, neurological, money, politics, disability