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Eunice Beck, RN, on Chronic Fatigue Syndrome & Fibromyalgia: What's In a Name? More Than Most People Think

  [ 253 votes ]   [ Discuss This Article ]
www.ProHealth.com • May 19, 2004


Dear Friends,

Linguistics is defined as a study of sound, structure, meaning, vocabulary, and development of language. How words are used has certainly caused a great deal of difficulty for many of us. That the disease we have has been named chronic fatigue syndrome has done a great disservice to all of us. Most people in our society are “chronically fatigued.” None of us can imagine comparing that to the devastating exhaustion, weakness and pain that encompass our lives.

Finally, I think linguistics may be in our favor. In a recent article quoted on the Co-Cure email newsgroup, Dr. James Le Fanu was quoted regarding CFS symptoms in teenagers. He said "Teenage symptoms of chronic fatigue syndrome are in the brain - not in the mind." "There can be few more grievous misfortunes than to be struck down by an illness that your doctor does not believe in." "Most now recognise, albeit belatedly, that chronic fatigue syndrome, or ME, involves a devastating disturbance of the brain's functioning, with severe disruption of sleep patterns and the autonomic nervous system, which controls blood pressure and temperature regulation." I think Dr. Le Fanu has put it very succinctly. The disease is in the brain, not in the mind. The disease is physical, not mental. The changes which cause symptoms are in the brain, the seat of nervous system controlling neural coordination. There are changes in the physiological functions of the brain. The disease is not mental, defined as affected with a disorder of the mind. The differences between the brain, defining the physical functions, and the mind, defining mental or psychological functions, are something most of us can understand. It should also aid in the explanations of our diseases to friends and family.

I won’t deny that there are some overlaps. Many of us have the symptom of depression, usually seen as a mental health issue, or of the mind. But there are now many studies that indicate that depression is strongly related to the physiological functions in the brain. Certain chemicals called neurotransmitters have many functions, some of which are related to our mental health, as well as our physical wellbeing. So many of us have heard “it’s all in your head” so many times that we even have an abbreviation for it (IAIYH). Most times this has been used by doctors and others to dismiss our physical symptoms as being unreal, and symptoms of some mental disease state. I expect some of us have even begun to doubt the reality of our symptoms at times. But there is no doubting the devastation they bring to our lives. Many of us have lost relationships, jobs, homes, loved ones because of this disease (I include CFS and FM as one entity although some may not agree with me).

Seeing that at least some in the medical community now recognize our symptoms as those of a physical disease should give most of us a boost. Dr. Le Fanu has given us an explanation in very simple words that definitely show the difference between physical and mental. His words give us a way to clarify the details of our disease in a manner easily understood by ourselves and others. Believing in oneself is the first step in maintaining some control over one’s life. If we are to feel comfortable that what we are feeling as part of this disease is physically real, we are much more able to pursue treatment for ourselves. We also have more investment in seeing publicity given to the change in quality of life all of us see as PWCs/PWFMs.

In my many contacts from writing this column, I see some of us having become activists in the politics of providing adequate recognition and research funding to find both adequate treatment, and potential cure for our disease. That activism is important because research money tends to go the more high profile diseases. Sometimes it is because these diseases cause many deaths in the society. In other cases it is because patients, as individuals or groups, have invested themselves in an organized advocacy effort. Having a famous name involved is certainly helpful (Christopher Reeve and spinal cord injury or Michel J. Fox and Parkinson’s Disease) but not necessary. ImmuneSupport.com (ProHealth, Inc.) is very involved in both research funding and advocacy, as are a number of other organizations and individuals.

Linguistics are important, both in understanding for ourselves and in advocacy for these diseases in the public arena. How we explain our disease will certainly influence our lives and interactions with our families and friends. How our disease is represented in the press and to the public will not only improve how we are viewed as individuals, but will affect the amount and type of research that is done on cause, treatment and cure. So, thank you, Dr. Le Fanu, for giving us words that make sense. Yours in health,

Eunice

Please note the change in the Coping Corner email address!
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I welcome your comments and questions at: copingcorner@prohealth.com. My articles and email responses are not being offered as those of a health care provider. The information and opinions included are intended to give you some information about your disease. It is very important that you empower yourself with knowledge and participate in your own search for care. Any advice given is not intended to take the place of advice of your physician or mental health care provider. Always follow your physician's advice, even if contradicted by something written here. You and your physician know your situation far better than I do. Thank you and be well. Eunice



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