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Rik Carlson and Chronic Fatigue Syndrome on ImmuneSupport.com

Posted Sep 14 2008 5:21pm

(Posted by Patrick Sullivan Jr.)

Here's a really touching story on ImmuneSupport.com about Rik Carlson, a Chronic Fatigue Syndrome Patient and 10-Year President of the Vermont CFIDS Association.

A few lines that stood out to me:

I am President of the Vermont CFIDS Association, almost 10 years now, and I have been at the receiving end of an 800 number. Patients form support groups when conventional medicine fails. There’s nowhere else to turn, but to find others. No one wants to do this, and to even imagine a group of CFIDS patients as “activists” is absurd. I have taken hundreds of calls - and over and over again I hear the same thing. “Do you know a good doctor? My doctor doesn’t believe this to be real.”...

You can’t imagine what it’s like to be so ill that you can barely stand, filling out a new-patient form in a doctor’s office, and when you get to the part about Chronic Fatigue Syndrome, watching the eyes roll at the other end. When that scene is repeated to exhaustion, there becomes nowhere to go, no one to turn to, no one who understands. And they find me. I refer them to our “Buddy List” and our newsletters on the Web page which is the most I can do. I talk.

Many doctors revert to a psychiatric profile first, encouraged by the awkward CDC definition… and CFIDS here has been mostly treated as illegitimate. When that comes from a physician, and then from a series of physicians, it leads to broken marriages, bankruptcy, and public housing. I’ve seen it, and I’ve heard it, over and over. And then people just disappear.

...

When CFIDS is treated as a psychiatric disorder and when the viral illness is ignored or denied, every time and I mean every time, no exceptions, the patient worsens.

...

You’re not sick if it’s only a syndrome. It’s not officially a disease, and it’s been given that foolish, foolish name. “Chronic” means you’re a whiner, “fatigue” means you’re tired, and a “syndrome” means it’s not real. I hate that name because so many in the traditional Vermont medical community have determined that it’s an unwarranted claim, making the search for a treating physician in my neighborhood fruitless.

Insurance companies are having a field day. From the first day that there is any indication of the need for a psychiatric profile, the patient has lost. A doctor is going to believe another doctor before he believes the patient, and then these distorted reports build on each other. They cast suspicion of secondary gain. They judge what they don’t know. As a result, the road to recovery is booby-trapped with red-flags and road blocks and terribly ill people are made far worse, and that stinks.

...

The overwhelming power of the medical/pharmaceutical/insurance cartel stomps and smothers, crashes and trashes, dominates and destroys.

Very similar doctor experience to what Pat has been through. Normally, I'm fair and balanced when talking about the pros and cons of allopathic vs. natural/alternative medicine. But after reading that, I'm not so happy with the " town of allopath" today.

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