ORIGINAL RESEARCH. Nine-Year Follow-Up of Danish Chronic Fatigue Syndrome (CFS) Patients: Impact on Health, Social, Vocational, and Personal Lives

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1 ORIGINAL RESEARCH Nine-Year Follow-Up of Danish Chronic Fatigue Syndrome (CFS) Patients: Impact on Health, Social, Vocational, and Personal Lives Mette Marie Andersen, MD Henrik Permin, MD, DMSci Frank Albrecht, Psych, PhD ABSTRACT. Objective: To determine quality of life (QOL) and health in Danish CFS patients 9 years after diagnosis. Methods: Thirty-four adults with CFS responded to questions regarding QOL at diagnosis, and again 5 and 9 years later. At 9-year follow-up patients also responded to questions regarding health, fatigue, use of Health Care system, alcohol and exercise. Mette Marie Andersen, Henrik Permin, and Frank Albrecht are affiliated with the Department of Internal Medicine L, Bispebjerg Hospital, DK-2400, Copenhagen, Denmark. Address correspondence to: Henrik Permin, MD, Department of Internal Medicine L, Bispebjerg Hospital, DK-2400, Copenhagen, Denmark ( HP16@bbh. regionh.dk). Journal of Chronic Fatigue Syndrome, Vol. 14(2) 2007 Available online at by The Haworth Press. All rights reserved. doi: /j092v14n02_02 7

2 8 JOURNAL OF CHRONIC FATIGUE SYNDROME Results: 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. Conclusion: After 9 years QOL was the same as at diagnosis, only mental health had improved. doi: /j092v14n02_02 [Article copies available for a fee from The Haworth Document Delivery Service: HAWORTH. address: <docdelivery@haworthpress.com> Website: < by The Haworth Press. All rights reserved.] KEYWORDS. Chronic fatigue syndrome, 9-year follow-up, quality of life, work disability, post-exertional malaise, mental health, hours sleeping and resting, physical health INTRODUCTION Studies on the natural course of CDC-defined CFS in adults have focused mainly on percent remission. In a systematic review, Cairns and Hotopf (1) found a median full recovery rate of 5% (range 0-31%). Work-related impairment with CFS was reviewed by Taylor and Kielhofner (2), who found unemployment ranging from 35-69% and job loss ranging from 26-89%. The present report of the natural course of CFS over 9 years is comprehensive, covering work, general health, social life, and long term disability. It is based on self-report quality of life (QOL) data from 34 Danish CFS patients at 3 points in time (1994, 1999 and 2003). In 2003 we also asked the patients about health-related questions. METHODS In 1994 the first 34 patients to be diagnosed with CFS were recruited for this study. These patients had been seen on referral from general practitioners by one of us (Permin), and diagnosed with CFS only if meeting both the Holmes et al. (3) and the Fukuda et al. (4) criteria. At

3 diagnosis mean age was 46.4 years and mean duration of illness was 4 years. Details of patients and methods were described earlier (5). Each patient responded to a 50-question QOL questionnaire. This instrument was re-administered 5 and 9 years later (the Repeated Measure ). At 9 years patients also responded to a 74-question questionnaire, Health in the Past 12 Months, covering general health, use of the health care system and health related behaviour (the New Health Measure, Appendix A). All patients were followed in the out-patient clinic from 1994 to Standard medical care was provided and symptoms (sleeplessness, pains, allergies, etc.) were treated accordingly. In 2003 patients were contacted by phone or and sent the questionnaires by mail. One patient was too ill to fill out the papers himself. Permin recorded his responses by telephone. We obtained information on patients disability benefits, pensions, and household access to a vehicle from other sources. Scoring of Data, Repeated Measure Responses to scaleable questions were scored on a 3 point scale (0, 1, 3), with zero indicating either no CFS-related disability or (on symptom-related questions) significant improvement. The highest score represented maximum disability or that the symptoms were much worse. Percent disability was defined as the actual score ( 100) divided by the maximum possible disability score. Nine outcome variables were constructed: work status, social impairment, hours per day sleeping and resting, cognitive disability, driving, neurological disturbances and allergies, depression/anxiety (D/A), sexual problems, and post-exertional malaise. Maintenance of a full or part time paid job defined normal work status. Normal functioning for other outcome variables was defined as a score of less than 30% of maximum disability. Scoring of Data, New Health Measure Original Research 9 CFS-Related Symptoms (Appendix A-1) were scored on a threepoint scale as with the Repeated Measure. Scoring of Nature of Fatigue was done (Appendix A-2). For data presentation the numbers were transformed from the 1-7 scale to a -3-3 scale. Disagreement with statements resulted in negative figures. Contact with Health Care System was recorded as shown (Appendix A-3). Alcohol intake was recorded in units (drinks) (Appendix A-4). Five outcome variables were

4 10 JOURNAL OF CHRONIC FATIGUE SYNDROME constructed: CFS-related symptoms, physical health in general, mental health, nature of fatigue, and fitness. Statistical Analysis Wilcoxon Matched-Pairs Signed Ranks test (Wilcoxon) was used to compare the outcome variables from 2003 with those from Analysis Of Variance between groups (ANOVA) was used to correlate individual 2003 outcome variables. Three patients with secondary diagnoses were excluded from statistics. RESULTS The 2003 response-rate was 100%. Two patients (6%) fulfilled criteria for full recovery. One (male) patient was seriously ill (bed-bound for 24 hours a day, body weight 45 kg, requiring constant care). The remaining patients managed their own lives to varying degrees. Three patients had received secondary diagnoses prior to 2003 (breast cancer, Addison s disease and chronic hepatitis C). We did not exclude these 3 patients but, as already mentioned, did not use their data in the statistical analysis. Repeated Measure, 2003 Compared to 1994 Disability scores in Tables 1 and 2 are shown in order of decreasing severity. 1. Work: One patient worked full-time but had changed to a less physically demanding job. Two had part-time jobs. Twenty-six patients received disability benefit or retirement pension, while 3 were provided for by their spouse. Four patients stated they had free-lance jobs (as writer, congregation worker, voluntary editor and artist, respectively) but each of these also received disability payments. 2. Post-exertional malaise: PE-malaise scored the second highest, and was unchanged compared to Sexual problems: Only 6 patients were as sexually active as before becoming ill, while 19 reported less or no sexual contact with their partner. The majority (78.9%) were too fatigued to have sex, while 36.8% had reduced libido, or a combination of

5 both. Nine patients had no partner. This was an increase compared to previous years (6 in 1999 and none in 1994 had been alone). Information on whether loss of partner had anything to do with reduced sexual contact was not obtained. 4. Neurological problems: Sleep problems (87.3%) scored the highest among the neurological problems. 5 Depression/Anxiety (D/A) factor: The D/A score in 2003 was 55.1%. This represented a significant improvement compared to 1994 (Wilcoxon p < 0.02). Panic attacks scored especially low. 6. Cognitive disabilities: With a mean disability score of 53.4%, the 3 items with the highest score were tip-of-tongue problem, attention deficit while reading, and forgetting names. 7. Social impairment: Reduction in out-of-home entertainment and time spent on former hobbies had the highest disability scores. 8. Driving: Among the 21 patients having a drivers licence and access to a household car, the mean driving disability score 36.7%. This included 9 who felt safe when driving and 12 who were more or less afraid to drive. The score was unchanged compared to 1999 and Two patients did not have a drivers licence. We do not know if the disposal of a car in 11 households was health related or for economic reasons. 9. Hours sleeping and resting: The mean number of hours sleeping and resting was 13.6 hours a day. This (non-significant) reduction compared to 1994 was due to a reduction in sleep only. New Health Measure, 2003 Original Research 11 Disability scores are in order of decreasing severity, Tables 3 and Fitness: Twenty-four patients judged their fitness as much worse. Six patients judged their fitness as being the same or better, while 4 judged it somewhat worse. 11. Physical health in general: Eight patients judged their health as being good, 12 judged it as tolerable and 14 patients judged their physical health as poor. Patients who judged their health as poor, slept and rested for 15.1 hours a day, while those with tolerable health slept and rested for 14.0 hours a day. Patients who judged their health as good slept and rested for 10.2 hours a day (mean) (ANOVA p < 0.037). Physical health showed no correlation with fitness.

6 12 JOURNAL OF CHRONIC FATIGUE SYNDROME 12. Mental health: Fifteen patients judged their mental health good and 12 who judged it tolerable. The remaining 7 patients judged their mental health to be poor. Mental health was significantly correlated with physical health (ANOVA p < 0.001). 13. CFS-related symptoms: Patients suffered from a mean of 7 symptoms among the 18 symptoms listed. Fibro-pain, fibrostiffness and joint pain had the highest symptom severity-scores; but restless legs, tingling of hands and feet, irritable bowel, headache, and brainfog also had high scores. Symptom score was significantly correlated with physical health (ANOVA p < 0.02), but not with mental health. In addition, there was no significant relationship between age and the following measures: fitness, physical health, mental health, symptom score and sleep/ rest time. 14. Nature of fatigue: Most patients agreed with the statements fatigue prevents lasting physical performance, physical activity makes me fatigued and following physical activity I feel fatigued for a long time (Table 4). Most patients disagreed with the statements inactivity makes me fatigued and fatigue is worst in the morning. New Health Measure, Other Results, 2003 Use of the health care system: Thirty patients had seen their general practitioner and 20 patients had seen a specialist in the past 12 months. Twelve patients had visited alternative practitioners. Ten had seen a physiotherapist. Six had had a hospital admission. None had seen a psychiatrist. Alcohol: Sixteen patients (47%) never drank alcohol. Those who drank had a mean intake of 1.76 units (drinks) of alcohol per day. In Denmark, mean adult alcohol consumption is 2.1 drinks per day. Exercise: Walking was the most common form of exercise, engaging 19 patients (56%) for 2 hours or more a week. Seven patients did sports for 2 hours or more a week, while a total of 11 patients exercised less than 2 hours a week. Medicine for CFS Symptoms Five patients took low doses of thyroid hormone and 3 took low doses of corticosteroids. Thirteen patients were taking sedatives, 5 took anti-depressants periodically. Fourteen took sleeping medications.

7 Original Research 13 TABLE 1. Disability scores in 34 CFS patients *

8 14 TABLE 2. Disability scores in 34 CFS patients

9 Original Research 15 TABLE 3. Fitness, Health and CFS-related symptoms 2003 Twenty-five patients took over-the-counter medicine, mostly painkillers (aspirin and acetaminophen), 21 patients took nutritional supplements, including multivitamins and minerals. DISCUSSION This 9-year follow-up study of QOL in CFS showed that our patients as a group had neither improved nor deteriorated since diagnosis. The relative order of severity for the outcome variables stayed the same; the disabilities which were most severe or disturbing at diagnosis remained so throughout. As reported previously (5), we found full and sustained

10 16 JOURNAL OF CHRONIC FATIGUE SYNDROME TABLE 4. Nature of Fatigue 2003 recovery in 2 patients (6%). Three patients had received secondary diagnoses, but in each case the specific treatment given had not improved their CFS symptoms including fatigue. Our results underscore the chronicity of CFS and provide prognostic guidance for physicians, patients, and their families. The high score for work disability is probably an inevitable consequence of the fact that most patients suffered from post-exertional (PE) malaise, with massive needs for sleep and rest. In addition, patients needed to control the timing of their energy expenditure, a need that is not compatible with almost all forms of regular employment. The high score for PE-malaise supports other studies showing PE-malaise as one of the cardinal markers of CFS (6).

11 Original Research 17 Patients slept and rested for a mean of 13.6 hours a day, with sleeping accounting for 9.0 hours. Patients reporting better health in general reported sleeping less than those reporting poorer health, not surprising in an illness characterized by fatigue. The mean score was also high on the question Do you have difficulties sleeping (either sleep much more than before, cannot fall asleep, wake up frequently)? Scores for night time urination, and for nightmares, indicated that patients woke up frequently. Almost half the patients took sleeping medication, suggesting problems with falling or staying asleep. Most patients reported one or more kinds of sleep problems after 9 years. Our patients had significant problems with sexual relations with partners. The majority attributed these problems to fatigue. Jason et al. (7) found the presence of sexual problems indicative of CFS, whereas Vermeulen and Scholte (8) did not find problems with sexual interest or desire with their patients. This topic deserves more study. Among those who felt depressed, the vast majority said they were feeling depressed about the illness. This indicates adjustment reaction rather than depressive illness. Only 5 patients took anti-depressive medicine in 2003, supporting the finding by Ax et al. (9) that antidepressants are ineffective for treatment of CFS fatigue. None of our respondents had felt the need to see a psychiatrist over the preceding 12 months. Statements about fatigue that scored the highest were related to physical activity, stress, work, and concentration difficulties. The statement fatigue is worst in the afternoon/evening scored high, while fatigue is worst in the morning scored very low. This is another indication that patients do not suffer from major depression. Overall, the D/A factor improved significantly from 1994 to This finding is supported by patients low scores on mental health related disability in 2003, supporting the view that mental health problems in CFS are adjustment reactions. Over time emotional integration and coping skills improved despite lack of physical recovery. Our patients have been ill for many years. They probably have obtained extensive experience with their exercise limitations. More than half of our patients took walks for 2 hours or more a week, suggesting that walking is not experienced as a strenuous activity. Lehman et al. (10) found that patients who believed that the path to recovery was through limiting their physical exertion had significantly lower depression and anxiety scores than their counterparts. We feel confident that our patients were able to respect their own limits and exercise as much as they possibly could. Until more information is presented on the

12 18 JOURNAL OF CHRONIC FATIGUE SYNDROME pathophysiology underlying PE-malaise, recommending strenuous exercise to CFS patients is hazardous. The disability score for cognitive abilities and memory covered a range of problems in addition to the issue of car driving. Coping with modern traffic demands more cognitive skills than available to most of our patients. The driving disability score was recorded among those with a car, and some patients may have disposed of their car because they were unable to drive it. Scores for social impairment were also unchanged over time. Sleeping and resting for 15 hours a day leaves little time activity or recreational hobbies. Many patients stated they felt they lived only half-a-life. Almost half the patients abstained from drinking alcohol, and for those who did drink, the mean intake was low compared to Danish adult population. Alcohol intolerance in CFS patients was also found by Woolley et al. (11), and may be of interest in connection with research on the pathophysiology behind CFS. Thirty patients had seen their general practitioner at least once during the past 12 months. This is much below the norm for doctor visits in the Danish population (mean = 6.5 visits per year). Our high response-rate at the CFS clinic and the low use of other health care utilities could be attributed to the quality of the relationship of Permin with the patients, as well as to vigorous follow-up with potential non-responders. Our findings were based on self-report questionnaires. Such instruments have well-known limitations, such as recency effects, faulty memory, and problems with understanding the questions. In 2003 the vast majority of patients stated that they experienced daily, weekly, or monthly symptoms fluctuations. Because the focus of our instruments was current symptoms and problems, we were unable to shed any light on this important and interesting topic. In addition, rheumatic symptoms dominated the list of health problems troubling our patients. We had not previously asked about these symptoms, so we do not know whether these problems have worsened since REFERENCES 1. Cairns R, Hotopf M. A systematic review describing the prognosis of chronic fatigue syndrome. Occup Med 2005; 55: Taylor RR, Kielhofner GW. Work-related impairment and employment-focused rehabilitation options for individuals with chronic fatigue syndrome: A review. J Mental Health 2005; 14:

13 Original Research Holmes GP, Kaplan JE, Gantz NM, et al. Chronic fatigue syndrome: A working case definition. Ann Intern Med 1988; 108: Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: A comprehensive approach to its definition and study. Ann Intern Med 1994; 121: Andersen MM, Permin H, Albrecht F. Illness and disability in Danish chronic fatigue syndrome patients at diagnosis and 5-year follow-up. J Psychosom Res 2004; 56: Taylor RR, Jason LA, Curie CJ. Prognosis of chronic fatigue in a community-based sample. Psychosom Med 2002; 64: Jason LA, Torres-Harding SR, Jurgens A, Helgerson J. Comparing the Fukuda et al. criteria and the Canadian case definition for chronic fatigue syndrome. J Chron Fatigue Syndr 2004; 12: Vermeulen RCW, Scholte HR. Chronic fatigue syndrome and sexual dysfunction. J Psychosom Res 2004; 56: Ax S, Gregg VH, Jones D. Coping and illness cognitions: Chronic fatigue syndrome. Clin Psychol Review 2001; 21: Lehman AM, Lehman DR, Hemphill KJ, Mandel DR, Cooper LM. Illness experience, depression, and anxiety in chronic fatigue syndrome. J Psychosom Res 2002; 52: Woolley J, Allen R, Wessely S. Alcohol use in chronic fatigue syndrome. J Psychosom Res 2004; 56: doi: /j092v14n02_02

14 20 JOURNAL OF CHRONIC FATIGUE SYNDROME APPENDIX A. The New Health Measure Questions regarding the past 12 months

15 Original Research 21

16 22 JOURNAL OF CHRONIC FATIGUE SYNDROME

17 Original Research 23

PATIENT REGISTRATION PERSON TO NOTIFY IN CASE OF EMERGENCY. Name: Relationship: Phone:

PATIENT REGISTRATION PERSON TO NOTIFY IN CASE OF EMERGENCY. Name: Relationship: Phone: PATIENT REGISTRATION Patient's Name (Last, First, MI): Date of Birth: Age: Sex: M / F Social Security Number: Address: Apt. # City: State: Zip: Home Number: Mobile Number: Work Number: Employment Status: