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But You Look So Healthy!
By Joe Bellefeuille
It's not easy to help someone whose problem you don't understand. Here's some information that can help you help people who suffer with chronic fatigue syndrome (CFS).
while back I was having a bad day. Although not feeling well, I dragged myself to church services. The details are a bit fuzzy now, but I believe before services I met a nice, quiet, older gentleman. We exchanged pleasantries and our names. Services were about to begin, so I got seated. Afterwards, I met a nice, quiet, older gentleman. I introduced myself. He looked puzzled and explained we had met before services. I apologized.
We had a potluck meal that day. After going through the line and selecting my food, I sat down across from a nice, quiet, older gentleman. Of course, I introduced myself. Once again, he stated we had met earlier. Of course, I was embarrassed, but I had no memory of his face or his name. Was this an example of Alzheimer's? In my case, no. I have chronic fatigue syndrome, and sometimes my short-term memory is very poor. Although I look perfectly well, my general health is poor. I can be up about three continuous hours, but then I need to rest. Some days--unexpectedly--I need to rest most of the day.
So, what exactly is CFS? According to the Centers for Disease Control (CDC), the 1994 case definition for CFS is:
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Clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is of new or definite onset (i.e. not lifelong), is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction in previous level of occupational, educational, social or personal activities.
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The concurrent occurrence of four or more of the following symptoms:
- substantial impairment in short-term memory or concentration
- sore throat
- tender lymph nodes
- muscle pain
- multi-joint pain without joint swelling or redness
- headaches of a new type, pattern or severity
- unrefreshing sleep
- post-exertional malaise lasting more than 24 hours
These symptoms must have persisted or recurred during six or more consecutive months of illness and must not have pre-dated the fatigue.
The CFIDS Chronicle, a magazine for people with CFS, estimated (based on a number of prevalence studies including the 1999 DePaul University study in Chicago) that there are 200,000 to 500,000 adults in the United States that have CFS. It seems that many congregations have at least one person with CFS (or a similar disease, fibromyalgia). In my small congregation I know of three or us who have been diagnosed with CFS.
How can you help people with CFS?
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Be patient with us. Some days our memory or concentration or energy level may be very poor. Help us. We may need you to repeat things a few times or remind us to write things down. Some of us think very slowly. Please talk about a subject first and gradually ease into questions or decisions that have to be made. When people spring unexpected questions on me--especially on bad memory days--my mind tends to go blank or I may give a knee-jerk response that may need to be changed later. We appreciate invitations to go out or to fellowship. Regretfully, we may have to decline because of fatigue or because our energy is about gone. But don't stop inviting us--we need the fellowship with brethren. All too often brethren with CFS only see other brethren at services when health allows us to attend church.
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Be flexible. When planning an activity that includes people with CFS, please be flexible. Because our health is so unpredictable, we cannot guarantee our attendance at future events. Please do not schedule activities that require or rely on us to be there. A few years back I was accompanying a vocal group for special music. However, when the day came to perform, I was sick. Thankfully, the group was able to sweet-talk another pianist into playing at the last minute. It is always a good idea to have a Plan B--just in case.
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Be encouraging. Many of us with CFS have to battle major health problems along with a myriad of other challenges. Because of our health, we may not be able to attend church every week. When we are able to attend, please be supportive. Take the time to listen to how we are doing. Add us to your prayer list and pray about our health and other needs. Since there is no known cure for CFS (as there is no cure for many other diseases), please remember it can be very discouraging living with CFS. Please bear in mind that it is not encouraging to be lectured on the "cure" for CFS which you are selling to brethren at a special price. By the same token, it is also not encouraging to be "exhorted" to do what is physically impossible.
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Telephone people with CFS. Walk with us through our triumphs and our trials. Please check with the person to find out what is the best time for them. Please do not assume that 6:30 a.m. (your best time) is also the best time for others. Along the same lines, please do not "pop" over unexpectedly for five-hour visits. Although people with CFS appreciate your good intentions, some days we may be in relapse (resting most of the day) and simply cannot entertain people then.
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If you are ill with a contagious disease, please avoid contact with people who have CFS. Our immune system may be extremely weak and we may have the tendency to catch every "bug" that is going around. By the same token, please do not expect us to visit people in hospitals or in places that have contagious diseases.
CFS is an overwhelming chronic disease. In order to help people with CFS: be patient, be flexible, be supportive and, when contagious, avoid contact with us.
If you want more information about CFS, you can contact:
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The CFIDS Association (a national CFS group) at 704-365-2343 or toll-free at 1-800-442-3437 or on the Web at www.cfids.org.
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The National Institutes of Health (NIH) at 301-496-5717 or on the Web at www.nih.gov.
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Those who will try these suggestions will be greatly appreciated by those of us with CFS!
Copyright 2000 by United Church of God, an International Association All rights reserved.
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