“But you don’t look sick.”

If I hear it one more time I may get sick. A friend of mine sent me an email about an ABC reporter looking for someone to interview about Chronic Fatigue Syndrome today. So I emailed her and she called and we ended up talking for awhile about the thing I’m almost more passionate about than homelessness - Chronic Fatigue Syndrome and Fibromyalgia.

I have them both and have had since I was 36, although it took much longer to get the diagnosis. Doctors told me I had everything from Multiple Sclerosis (I did/do not), Lyme’s Disease (I did, but not until 10 years after the onset of symptoms and definitely related to a tick bite that left the classic bull’s eye on my back). No one knew what it was, so failing a diagnosis, they opted for the stand by of most doctors - “It’s all in your head. You’re stressed. You’re crazy. You’re lazy. You’re depressed.”

No. I’m a journalist, a writer, an investigator. And so I dug. I questioned. I kept going to doctors and eventually a Nurse Practitioner was able to test the sore knots on my body and pronounce that I might have Fibromyalgia. Her supervising physician came in, agreed and I finally had a diagnosis. That took a tremendous weight off my shoulders since (1) I’d never heard of it before and now I had a name for what I was experiencing. That meant that other people had it too. So I was not alone. And (2), it meant I had a starting place, an anchor, a place to begin looking from. So I did.

It took awhile, but I found out that a lot of doctors believe CFS and Fibro are related to a virus. The official medical community disagrees, mostly because it’s not in their financial best interest to do so. After all, the push to sell pills and cures means more to doctors than finding answers.

Like I told the reporter, doctors want a blood test, or some proof in a repeatable diagnosis so that they can show insurance companies that treatment is (1) justified and (2) they won’t have to spend so much time with patients. They can pop in, charge $300 for 3-minutes, pop out, order a $99 blood test and then prescribe a round of expensive pills. That’s what modern medicine is all about these days.

Apparently someone came down hard on the folks who found that CFS was probably related to a virus. Because a new report came out claiming the study was bogus. Not surprised. I think it’s interesting that the blood banks still won’t let people with CFS and Fibro donate blood tho. If it is in the blood, then it can be transmitted. Which means, it’s a virus. Virus’ are too small to be seen with the equipment we have today. They replicate inside of cells and the little bastards are hard to find, harder to categorize and harder to test for. So, since science only believes in what it can see, prove and replicate, a CFS virus doesn’t exist - yet.

If doctors did what doctors used to do, which is take our histories, get to know us, and evaluate us based on a holistic view of who we were, onset, symptoms and history and treated us based on their diagnosis rather than on the results of some overworked, underpaid, undereducated lab tech somewhere, we’d be a lot better off. But that’s not economically rewarding. If doctors can move 20 patients through their office in an hour, order a test and prescribe expensive pills then the doctor, the office, the pharmaceutical company and everyone in the supply chain wins (eg makes buttloads of money). The patient, that would be me and you, loses.

So until money is no longer a factor in discovering a cure for Fibromyalgia and CFS, we’re left with a handful of doctors who do care and who do it the old fashioned way. Doctors like Jacob Teitelbaum. He’s not only a medical doctor, no quack. He had CFS and Fibro himself when he was in med school. He dropped out for a year to heal, became homeless, then went back to school and finished his degree. Now he only treats CFS and Fibro patients. And, he has trained other doctors in clinics around the country that are helping thousands of people just like me. He knows that we don’t have money to get the treatment we need because we can’t work full or even part-time in some cases. So he goes out of his way to make things affordable, and even has protocols and advice on his website (free) that people can try to see what helps.

It’s a start. In the meantime, I continue to work as I can and hope for a cure.