Saturday, October 31, 2009

My CFS Journey, Part 4

Here's some information that might possibly help other PWCs.

I got involved in an internet support group for pwcs and at one point we were discussing the wide assortment of symptoms. I did an informal survey and about 45 of the 250 or so active members participated. I had been an English major and knew nothing about how to do scientifically accurate surveys. There was no control group and the information was just narrative replies to the questions I had asked.

However the informal survey showed a clear pattern and a member who did know how to work with statistics said the results were significant.

Nearly all the people who participated had either had what they called "drop dead flu" and not seen a doctor for it or had been diagnosed with one of several viruses including mono (Epstein Barr,) herpes, and Coxackie. A member who had been in the medical field said all those viruses were known to cross the blood-brain barrier.

Perhaps they have an effect on the neurological system, but lots of people get them and recover completely in a reasonable amount of time.

But the interesting result of the survey was that most of us had also had a severe accident, major surgery, or another serious illness within a few years of getting CFS. Apparently the combination of attacks on our systems had something to do with why we didn't just get over the viruses like most people do.

I've wished for years that someone would do a genuine scientific study taking that information into account. If there are any interested scientists out there, please contact me.

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