A recent article in the Wall Street Journal underscored the problems schools and parents face whose children suffer from Chronic Fatigue Syndrome (CFS). Amy Marcus tells the sad story of increased conflicts between parents and school districts as they seek to educate children with CFS who cannot cope with the daily routines of class and study.
By federal law public schools are required to provide a “free appropriate public education” in the “least restrictive environment” to children with special needs. But is CFS a “special need?” Most agree that it is. But it was not always this way. Until the Center for Disease Control and Prevention (CDPC) took CFS seriously this was not the case, perhaps for several decades at least. The CDCP estimates that one million Americans have CFS. As many of you know I am one of those Americans.
Amy Marcus correctly says CFS is a condition characterized by debilitating pain and severe fatigue, among a cluster of other related symptoms. These related symptoms include many things but the Mayo Clinic, which at one time did not recognize this illness seriously, now recognizes the illness in the way that has become common in the medical community.
Besides the central condition, from which this illness gets its name, Chronic Fatigue Syndrome has eight (additional) official symptoms:
- Overwhelming Fatigue
- Loss of memory or concentration
- Sore throat
- Enlarged lymph nodes in your neck or armpits
- Unexplained muscle pain
- Pain that moves from one joint to another without swelling or redness
- Headache of a new type, pattern or severity
- Un-refreshing sleep
- Extreme exhaustion lasting more than 24 hours after physical or mental exercise
Reports on CFS are numerous but a recent one in the UK proved helpful to me. There is no diagnostic or blood test for CFS and no known cure. Diagnosis is based upon a pattern of self-reported symptoms, which tend to flare and subside, or ebb and flow. For me there have been times when I felt “almost” normal and times when the illness seems to overwhelm me like a force that wants to make me give up on life. One has to fight with the emotional and mental aspects of this almost every hour of every day. My best moments are times when I am so absorbed in something that I enjoy, like a baseball or football game, a movie or a book (though concentration is extremely difficult), that I forget (for only a moment) that I feel so badly. I have come to believe that living with a CFS patient is extremely difficult and acquaintances cannot completely grasp how much this has impacted my wife, family and friends. My wife bears the worst of this since she sees me at my very worst and hears me confessing how badly I feel more than almost anyone else.
Increased awareness of CFS has led to more and more calls for research, especially among adolescents. This is particularly related to the problems created by students who cannot cope with school but who want an education and have good minds. Researchers at DePaul University in Chicago now suggest that as many of one in one hundred adolescents have CFS. For educators CFS is one of a growing group of “hidden disabilities” that are increasingly diagnosed in children. Many of these are not “visible” so how do schools deal with them? (Some illnesses included in these include fibromyalgia, multiple chemical sensitivities, Crohn’s disease and migraines.) It is quite likely that you know someone, or have a family member, who suffers from such an illness. If you do you are aware that these symptoms are very real yet the sufferer can do little about them but find ways to cope and face each day without hope of really getting a lot better. (This is especially true if you’ve had the illness for more than a decade!) The good news is that many younger adults will likely improve over time.
A Washington-based institute on research in education says that students diagnosed with various chronic health impairments that sap energy is one of the fastest growing groups of special-education students in America. Their numbers have doubled since 2004. Only autism has grown faster in number.
One high school student with CFS says of her trial, “Some days I can talk about Plato’s Republic. And some days, I don’t remember my address.” That says it quite well as far as my experience goes.
You try to come up with a plan that works for you. There are days that begin well and by 10 a.m. you are done. There are other days that do not begin as well and somewhere, during the day, you find some strength. There is no rhyme or reason it seems. Changing diets, climates and doing nothing have had no great impact on me. I have been to seminars on the mind, classes on biofeedback type thinking and healing sessions. I have been prayed over by gifted Christians and leaders. I have supplemented my body with so many things a list would be too long to provide. Worst of all I still have people who insist they know “the cure” for this strange illness that is most likely rooted in a virus of some yet to be identified type. The best research lies here but even if we discover the virus, and the way it enters the human system, there is no guarantee we can treat it.
There is one medication that helps me cope to a limited extent. I am considerably better with this medication than I am without it. I struggled mightily, for several years, with taking this drug because I was taught that an illness like this is mostly in my mind and I should simply trust God more. I had to fight this until one evening I prayed and took the drug and have never looked back. I’m glad I made that commitment and now give thanks for the moderate help this medicine provides in granting me restful recovery by slowing down my nervous system.
One of the most insightful discoveries has been the suggestion that CFS brings about the inflammation of the central nervous system. I am fairly convinced this is true. I respond to stressful moments, and even to ones that are not all that stressful, as if I feel under intense (unexplainable) pressure all the time. I can’t explain this but things that come at me quickly cause me to shut down and react in unhelpful ways. It seems my system is overloaded. I must learn to sort out things into manageable small doses and know when to say “no.” For me this is a huge learning curve to be managing so late in life.
For children there is less adult experience and maturity to handle this trial. If your child has CFS learn the signs and symptoms and be prepared to cope (with great difficulty) when your adolescent has no desire to engage with activity and mental work. You will need grace and patience to cope. Find people who understand and work at this with all your might in the Lord’s grace. It will be a huge trial I assure you.
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John, I will continue to pray for your fight in this area. My wife struggles with something similar, fibromyalgia, so I understand a little bit of your pain.