Chronic Fatigue Syndrome is one of the most controversial problems – perhaps the most controversial – when it comes to chronic illnesses in children. Some clinicians even debate the existence, particularly in children, of this most unfortunate diagnosis.
Why “unfortunate?” Because the diagnosis is so controversial and effective treatment so elusive that these patients often suffer, along with their constantly concerned parents and puzzled siblings. This condition frequently leads to not only fatigue in the patient, but also in the whole family, teachers, coaches and even sometimes the doctors who want to help, but seem
unable to do so. The often-persistent inability to help the patient frustrates more than just the chronically fatigued child. This frustration drains everyone. The longer it lasts, the worse it can become. It feels like being pulled down by the wearing of heavy lead clothing all day long.
There is no specific or objective diagnostic test to identify chronic fatigue syndrome (CFS.) Diagnosis in adults depends on having more than 6 months of unexplained fatigue along with at least 4 of 8 so called somatic complaints: sore throat, tender lymph nodes, painful muscles, headaches, sore joints, unrefreshing sleep, fuzzy thinking and post exercise tiredness, lasting more than 24 hours. In children, this diagnostic criteria has never even been
validated, adding to the already controversial nature of CFS among young patients.
CFS is an illness of unknown cause. The debilitating fatigue, some speculate, may be related to a viral infection such as the Ebstein Barr Virus. This virus causes Infectious Mononucleosis. However, no specific infectious agents have been consistently linked to the illness. Other clinicians see CFS as a primary psychiatric disturbance, yet there are many adolescents with CFS who have no demonstrable emotional illnesses. More recent studies point towards abnormalities in the autonomic nervous system, which is the system in our bodies which runs on auto pilot, where we have no conscious control as opposed to the conscious use of our neurological equipment.
One of the first paediatricians to study CFS in children and adolescents, Dr. David Bell, lives in upstate New York. Dr. Bell recently published data, looking at a thirteen-year follow-up study of 46 children who developed an illness suggestive of CFS. The purpose of the study was to describe the educational, social and symptomatic outcome of children and adolescents with
CFS. Data were obtained concerning medical diagnosis, amount of school missed, presence and severity of current symptoms and subjective assessment of degree of illness resolution.
The participants were mostly female (68%) and the average age at onset was 12.1 years. In 77.1% of the cases the onset was gradual. No participant received an alternative medical diagnosis that could have explained the symptom complex. After the 13-year follow-up, 37.1% considered themselves resolved of illness; 42.9 % considered themselves well but not resolved;
11.4% considered themselves chronically ill and 8.6% considered themselves more ill than during the early years of illness. Missing school seemed to be an important issue: 22.9% missed more than 2 years of school and 5 out of the 8 who missed that much school were still ill at follow-up. The amount of school missed correlated with both illness severity and perceived social impact. Generally speaking, 71% of children who missed “little or no school” reported that they recovered completely and the remainder “never recovered completely but felt pretty well.” For more details on this excellent, current study, see “Pediatrics” Vol 107 No 5, May 2001 p994-998; David S. Bell MD et al or look online at www.pediatrics.org
Studies, although intellectually interesting and sometimes of practical use, can help us understand CFS better. But what about the management of this frustrating problem? What should a concerned parent do to help the debilitated child? My advice to families includes the following fundamental ideas:
- Make sure you use a doctor who is patient, open-minded and above all, listens sympathetically. Managing CFS patients is not for speedy, shortcut-taking, impatient physicians;
- Ensure the appropriate tests are done but avoid over investigating the child. This alone may sometimes add to an already frustrating situation;
- It is increasingly common for frustrated families to use alternative therapies. When doing this, ensure the traditional physician is told about it. It is better to work together as team than to do things behind each other’s backs;
- Be patient and focus on the positives more than the negatives and do so one day at a time. The majority of patients eventually do get better. Never lose hope!
- Consider joining a credible and recognised support group. There is strength in numbers, and although the danger of these groups is that gripe sessions may aggravate the CFS, the positive is the benefit of mutual support and encouragement;
- Do your own research and limit it to peer-reviewed publications only. Be aware of less credible, opportunistic entrepreneurs who have great articulation and marketing skills.
I am always fascinated by how little we really know in paediatric and medical medicine, despite all the recent exponential growth in knowledge. CFS in children illustrates this point. Yet, the optimist in me wants to believe that within the next decade we will not only find which infectious agent causes CFS, we will even be able to immunize our children against it. Time alone will tell…
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