Chronic Fatigue Syndrome: An Illness Gone Political

CFSimageandmsg Some of you, especially close friends, know that I’ve struggled with a strange illness called Chronic Fatigue Syndrome (CFS) since 1997-98. When I was initially diagnosed the illness was just beginning to get notice in the wider press. Now articles appear in the mainstream press routinely.

The very conservative Mayo Clinic, which for many years did not recognize the disease, says:

Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that may worsen with physical or mental activity, but doesn't improve with rest. Although there are many theories about what causes this condition — ranging from viral infections to psychological stress — in most cases the cause is still unknown.

Because its symptoms are difficult to measure, CFS wasn't widely accepted as a real medical condition for until about a decade ago. Today, however, doctors and researchers almost totally agree that this chronic condition should be taken very seriously.

The disease has also been referred to as myalgic encephalomyelitis (ME), a term used in the United Kingdom, or post-viral fatigue syndrome (PVFS), designation used in other contexts. In the US, CFS has remained the name.

Fatigue is a common symptom in many illnesses, but CFS is comparatively rare. Symptoms of CFS include post-exertional malaise; un-refreshing sleep; widespread muscle and joint pain; sore throat; cognitive difficulties; chronic, often severe, mental and physical exhaustion; and other characteristic symptoms in a previously healthy and active person. CFS patients may report additional symptoms including muscle weakness, increased sensitivity to light, sounds and smells, orthostatic intolerance, digestive disturbances, depression, and cardiac and respiratory problems.

I would describe my own struggle with CFS as one that ranges from mild to moderate symptoms, with an occasional period of some months where there can be almost complete exhaustion (often in the winter months or when I contract a viral illness; a cold, the flu, etc.). One of the more difficult stress points for me is the loss of my cognitive ability to think as clearly as I would like. I often feel overwhelmed with various complex (and racing) thoughts and find a rise in noise, extreme light and human conflict creates huge cognitive stress. I can read, but not for sustained periods, and I can still write. (Writing, for me, can actually prove quite therapeutic. This is likely because it is my creative ability and thus relaxes me!)But I have problems dealing with various stressors that require me to make choices and face some daily decisions. One of the reigning medical theories is that CFS creates an inflammation in the central nervous system. It seems, at least in my case, that this theory makes a lot of sense. For me, ibuprofen helps when things are at there worst.

Physician I have sought medical care from so many sources that I have stopped counting. I have tried therapies ranging from new sleep habits, biofeedback and cognitive behavioral modification to several drugs. I have changed diets numerous times and supplemented my body with vitamins, herbs and hormones. There is one drug that helps with the cognitive struggle and gives me better sleep. I have gone on and off this drug but now prefer to remain on it. There is nothing that remotely cures or removes this disease. Some people do get better but most who’ve had it as long as me will not get over it. I am, after much trial and error, at peace with this fact. God’s grace is sufficient.

Over the past thirteen years I have changed lifestyle, traveled a lot less and rested a lot more than I would like. My central problem is that I am a high-end Type A person with a great desire to accomplish more and more. Eventually, through great trial and error, I have accepted this illness for what it is and begun to learn how centering prayer helps me to better cope with chronic illness. (A chronic illness, you must understand, means that there is never a time when you do not have these symptoms, only that they might lessen, or they may get much worse. Each day is different and brings its own challenges.)

One other discouraging part of my own journey is how often people have insisted that could cure me. Most of these well-meaning people had products, supplements, courses or therapies that may have helped them in some way. They do not help me. With my wife’s help I have learned how to tell people, “Please, I do not need another offer for help. I am doing what my physician advises and had the care of numerous doctors.” I have also been prayed over by gifted Christians and by pastors/elders who anointed me according to James 5.

The number of people with properly diagnosed CFS is hard to determine since many never actually get a proper diagnosis. Studies have said that there are 7 to 3,000 cases of CFS for every 100,000 adults, but national health organizations have estimated that more than 1 million Americans have CFS and approximately a quarter of a million people in the UK have it. CFS occurs more often in women than men, and is less prevalent among children and adolescents, though they do have the illness. A number of well-known physicians, scientists, authors and famous athletes have told stories of dealing with CFS.

There is no agreement on the cause of CFS. There is even less about treatment. But now, as opposed to the 1990s, there is wide scale agreement that CFS is a genuine threat to health, happiness and productivity. Various physicians' groups, researchers and patient advocates promote different nomenclature, diagnostic criteria, etiologic hypotheses and treatments, resulting in controversy about so many aspects of the disorder. The name CFS is itself controversial with patients and advocacy groups, as well as some experts. Some, and I tend to agree with this opinion, would like to see the name changed because they believe CFS stigmatizes the problem by not conveying the seriousness of the illness. I have had so many people, for instance, say something like, “Well, I am often very, very tired so I guess I have the same illness that you do!” When they smile and laugh I am sometimes deeply hurt, though by now I am over that reaction to a large extent. What I do know is that well-intentioned people who say this most likely do not have CFS. I listen and if they seem to have the illness I encourage them to see a good doctor who understands the illness and can treat it with the best that we have for now.

In recent years CFS has created a considerable storm among two major research and advocacy groups in the US. First, there is the Center for Disease Control and Prevention (CDC), which is more guarded in its conclusions and has argued for about twenty years that the illness is “a psychological problem.” The National Institute for Health (NIH), on the other hand, has been more open to wider and more sympathetic conclusions, at least according to the various advocacy groups for CFS. The NIH has gone so far as to suggest that this illness is very likely rooted in a retrovirus, making it something like the HIV virus in some ways. This conclusion has even led some to no longer accept blood from people who are diagnosed CFS patients. And this has led to a major conflict between advocacy groups and government agencies. Science and politics make bad companions in most cases and this is clearly the case with research and development on CFS.

This entry was posted in Chronic Fatigue Syndrome, Personal. Bookmark the permalink.