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Winter 2003  

Readers’ Forum
Correspondence with the Chronicle editor
In the Fall 2002 issue, the Chronicle asked readers to respond to this Hot Topic question:

“If you could explain one thing about your condition to a doctor, what would it be?”

I would like to be able to explain exactly how I feel. I would ask my doctors if they’ve ever had a severe flu that kept them sick in bed for a week or more. You sit at the edge of the bed and every muscle and bone seems to ache, and you feel weakness you can’t describe. Yet you know you have to get up and go back to the job. You can’t just stay in bed.

Combine this with brain fog, complete exhaustion and, in my case, fibromyalgia. Then add the phrase, “But you don’t look sick…”

That’s CFIDS. That’s me. And it doesn’t go away.

Carol E. Gottshalk, Florida

I would explain that, although no one clinical marker has been identified for CFIDS, physiological irregularities in many different body systems have been found in significant numbers of people with CFIDS. These include: lesions in the cortex of the brain; HPA axis irregularities (including low levels of CRH and cortisol); elevated blood plasma levels of cytokines that promote inflammation (such as IL-1 alpha); high CD4/CD8 ratios and T-cell disproportions; diminished numbers of natural killer cells; low molecular weight RNase L; sub-clinical hypothyroidism; adrenal gland dysfunction; alpha-delta wave sleep disruptions; statistically significant high incidence of irritable bowel syndrome; low levels of serotonin and norepinephrine, etc., etc.

Sue Hamilton, Vermont

Show true self during FCE test

In his recent commentary (“Finding a Fix for the FCE,” Fall 2002), Dr. Richard Podell described a patient who rested for several days prior to taking a Functional Capacity Exam (FCE) in order to “be able to do her best.” Unlike this patient, I did not want to be at the peak of my energy when I took the FCE.

I had to fly from Hawaii to Los Angeles for the test. I took an overnight flight and arrived feeling fairly tired and frazzled — much as I normally do when I have over-extended myself. 

Let me emphasize that I did not cheat on my FCE. I took my FCE feeling like I usually do on a bad day. I was a full college professor, a chair in my department, and I wanted to present an honest picture of my daily tribulations.

All of us with CFIDS know that there are things we can do on some days that we can’t do on others. Telling this to the unbelieving won’t convert them; they have to see for themselves. That alone justifies taking the FCE only when you are at your worst.

The results of an FCE may be critical in the determination of insurance benefits. Since the severity of our illness waxes and wanes, very careful planning for your pre-examination activities may be necessary. You do want a flare-up to occur during the FCE. Otherwise, you’ve left your insurer with negative evidence of your disability.

Herbert Jensen, PhD, Hawaii