Results from a 9-year follow up study of patients suffering from chronic fatigue syndrome reveal the impacts it has on every area of their lives.
Chronic fatigue syndrome (CFS) is a disabling condition which can disrupt the lives of patients (and those close to them) to a huge degree. In an attempt to identify exactly how the condition impacts on sufferers' lives, Danish researchers followed a group of CFS patients for a nine year period following diagnosis.
The study involved Thirty-four adults with CFS who responded to questions regarding QOL (Quality of Life) at diagnosis, and again 5 and 9 years later.
At the 9-year follow-up the researchers also asked patients to report on their general health, fatigue, use of the health care system, use of alcohol and the type and frequency of any exercise they are able to engage in.
The results of the research make depressing reading for those recently diagnosed with CFS with the general picture being that patient's quality of life is the same after 9 years as it was at the time of diagnosis.
The researchers report that:
- Two patients (6%) had recovered and 3 patients (10%) had received secondary diagnoses.
- Overall, there was no improvement, except with depression/anxiety.
- The order of severity among disabilities remained the same.
- Work had the highest disability score, followed by post-exertional malaise.
- Patients slept and rested 13.6 hours a day (mean).
- Self-reported physical health correlated with hours sleeping and resting.
- Rheumatic symptoms dominated the health symptoms.
- Alcohol consumption was low, and the use of the Health Care system was modest.
The results provide a stark insight into what life with CFS is like.
They are consistent with previous figures which indicate that a few patients (often the most severely affected) will have a spontaneous recovery. It is also common for CFS patients to be diagnosed with a number of other conditions, most commonly fibromyalgia, irritable bowel syndrome, and psychiatric disorders such as depression and anxiety.
The study shows that a high number of CFS patients are unable to work. This highlights the fact that mental work and crowded/noisy and bright environments tend to exhaust patients as much as physical exertion.
The information about sleep also ties in with the work figures. Someone who needs to sleep for over 13 hours per day just to function at a reasonable level will obviously be unable to hold down a full-time job. It also highlights the importance of sleep for recovery.
Only 'modest' use of health care services also demonstrates both that help for CFS patients is limited and that patients are not 'malingerers' as has often been suggested in the past, and still is to some degree.
Although this research won't do much to help sufferers stay positive, perhaps it will help to demonstrate to the public (and health care professionals) just how devastating this illness actually is. CFS patients deserve to be taken seriously when it comes to health care and financial help.
Source: Andersen MM Permin H Albrecht F (2007) Nine-Year Follow-Up of Danish Chronic Fatigue Syndrome (CFS) Patients Impact on Health, Social, Vocational, and Personal Lives Journal of Chronic Fatigue Syndrome 14(2):7-23