My Concerns About the New CFS Research

The press has been all over the new studies that have been released regarding chronic fatigue syndrome and its link to genetics. The buzz phrase in the press is disturbing me – I do understand what they are trying to say, but the way they are saying it is harmful to CFS patients. The phrase I keep running into is,

“…chronic fatigue syndrome appears to result from something in people’s genetic makeup that reduces their ability to deal with physical and psychological stress…”

What they are trying to say, is a phrase from “medicalese” – it means that the body has a deficit that causes it to react differently to stressors (meaning illness, injury or any variety of severe psychological strain) than the “normal” population has. It doesn’t mean that a particular person can’t cope.

It is important to understand that the medical profession uses the word “stress” differently than the layperson uses it. It does not mean overworked, overtired, overwhelmed or being a nervous wreck. Stress, to the medical professionals, means any strain put on the human body that is abnormal. Breaking your arm is a stress to the body. Having the flu or having surgery is also. A traumatic life event is also a stress because of the mind/body connection. The mind can be at peace with no stress during a time that the body is undergoing tremendous stress.

It would be like saying that a person with osteoporosis broke their hip during a fall because they have a reduced ability to handle stress. It isn’t their inability to handle the stress; it is a problem within the biology of the individual that causes the bones to have a problem, that results in an easy fracture.

Do you see my point? This phrase, the one I bolded above, is just a step above, in the eye of the layperson, Mr. Joe Average, saying that CFS is all in someone’s head. We need that kind of publicity like we need a hole in the head.

The problem results from a nonmedical media reporting medical news. Or from a medical media relaying news to a laypublic that really doesn’t understand the meaning of the terms physicians and researchers use.

To say that CFS patients have an inability to “deal with” stress is totally misunderstood. The risk is that it can cause an inadvertent negative reaction to those who have the illness. CFS isn’t in our heads and isn’t a result of an inability to cope. It is a very real something that needs to be clarified to a public who just doesn’t understand.

Take a look at this article from The Charlotte Observer. This is a perfect example. And it worries me – the results of this study may be groundbreaking but it also may backfire. I am taking a position of guarded enthusiasm. Quote from the article:

Reeves (of the CDC) said the study demonstrates that people with chronic fatigue syndrome are unable to deal with everyday challenges and adversity. That could include injuries, illnesses, divorce, even stressful jobs, the researchers said. The CDC estimates more than 1 million Americans have the condition, with women suffering at four times the rate among men.

Forgive me… no, don’t. I don’t feel a need to apologize upon thinking about it. This is my soapbox and I’m not sharing it. The comment above is pretty degrading if you think about it. I know people with CFS and I see what they do and how they fight it – to say that they are unable to deal with everyday challenges and adversity is just plain nonsense. The CFS community does NOT need that kind of help.

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