Recovery/Prognosis – Page 4 – American ME and CFS Society

Illness and disability in Danish Chronic Fatigue Syndrome patients at diagnosis and 5-year follow-up

Abstract:

OBJECTIVE: Evaluation of the life impact of Chronic Fatigue Syndrome (CFS) over 5 years.

METHODS: Thirty-three adult patients meeting 1988 and 1994 CDC case criteria answered identical questionnaires at diagnosis and 5 years later, when a retrospective questionnaire was also completed.

RESULTS: Work disability was very high and increased further, social isolation remained high, emotional adjustment improved. There were increased problems with reading and with allergies. Two measures of improvement were used: The relation between these measures was weak. Length of illness, extent of disability and emotional adjustment were poorly related to measures of improvement. Average illness scores were unchanged, but most individuals improved in some ways while worsening or remaining the same in others. Only one participant (3%) neared recovery, one other was substantially better but still severely disabled.

CONCLUSION: CFS patients exhibit severe, long-term functional impairment. Substantial improvement is uncommon, less than 6%. Allergies and aspects of cognition may worsen, emotional adjustment often improves.

Source: 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 Feb;56(2):217-29. http://www.ncbi.nlm.nih.gov/pubmed/15016582

Chronic fatigue syndrome in adolescents: a follow-up study

Abstract:

OBJECTIVES: To compare the frequency of persistent symptoms up to 8 years after illness onset in adolescents diagnosed as having chronic fatigue syndrome, idiopathic chronic fatigue, and unexplained fatigue for less than 6 months, and to determine if hospital admission is associated with outcome.

DESIGN: A cohort study using questionnaire follow-up.

SETTING: A tertiary referral hospital.

PATIENTS: Consecutive adolescents referred for assessment of persistent fatigue were identified and retrospectively divided into 3 groups according to the diagnostic criteria for chronic fatigue syndrome and idiopathic chronic fatigue.

INTERVENTION: A questionnaire was designed and administered by telephone at a mean of 4.57 years after the initial examination.

MAIN OUTCOME MEASURE: The persistence of self-reported symptoms was compared with respect to patient group and admission.

RESULTS: Outcome data were obtained for 34 (69%) of the 49 eligible subjects. Twenty-five percent of the chronic fatigue syndrome group showed near to complete improvement, 31% showed partial improvement, and 44% showed no improvement. The idiopathic chronic fatigue group had near to complete recovery in 50%, partial in 10%, and no improvement in 40%. Those with unexplained fatigue for less than 6 months had all recovered. There was no difference between the outcome of the subjects admitted to the hospital and those managed as outpatients.

CONCLUSIONS: Adolescents with less than 6 months of fatigue have a good outcome. Unexplained fatigue lasting more than 6 months has a similar outcome regardless of the presence of minor criteria for chronic fatigue syndrome.

Comment in: Adolescent chronic fatigue syndrome. [Arch Pediatr Adolesc Med. 2004]

Source: Gill AC, Dosen A, Ziegler JB. Chronic fatigue syndrome in adolescents: a follow-up study. Arch Pediatr Adolesc Med. 2004 Mar;158(3):225-9. http://www.ncbi.nlm.nih.gov/pubmed/14993080

A population-based study of the clinical course of chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) presents a challenge for patients, health care providers, and health insurance groups because of its incapacitating nature, unknown cause, and poorly understood prognosis. We conducted a longitudinal population-based study to characterize the clinical course of CFS.

METHODS: Sixty-five CFS subjects were identified from a random-digit-dialing survey of Wichita, Kansas residents and followed for up to 3 years. We evaluated changes in CFS classification (partial or total remission, alternative medical or psychiatric diagnoses), CFS case-defining criteria, wellness scores, hours of activities and sleep, and treatments used to reduce fatigue. Associations between risk factors and outcomes were determined by use of logistic regression and generalized estimating equations models.

RESULTS: Only 20%-33% of the subjects were classified as having CFS at follow-up, 56.9% ever experienced partial or total remission, 10% sustained total remission, and 23.1% received alternative diagnoses, of which 20% were sleep disorders. Higher fatigue severity scores and total number of symptoms were negatively associated with ever remitting. Duration of illness < or = 2 years was positively associated with sustained remission. Unrefreshing sleep persisted in at least 79% of the subjects across all periods but, as with most of the CFS symptoms, tended to be less frequent over time. The number of activities affected by fatigue decreased over time, while wellness scores increased. At any follow-up, more than 35% of subjects reporting reduced fatigue used complementary and alternative medicine therapies, and of those subjects, at least 50% thought these therapies were responsible for reducing their fatigue.

CONCLUSIONS: The clinical course of CFS was characterized by an intermittent pattern of relapse and remission. Remission rates documented by our population-based study were similar to those reported in clinical studies. Shorter illness duration was a significant predictor of sustained remission, and thus early detection of CFS is of utmost importance. The persistence of sleep complaints and identification of sleep disorders suggest that CFS subjects be evaluated for sleep disturbances, which could be treated.

Comment in: Chronic fatigue and chronic fatigue syndrome in the general population. [Health Qual Life Outcomes. 2003]

Source: Nisenbaum R, Jones JF, Unger ER, Reyes M, Reeves WC. A population-based study of the clinical course of chronic fatigue syndrome. Health Qual Life Outcomes. 2003 Oct 3;1:49. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC269990/ (Full article)

The prognosis after multidisciplinary treatment for patients with postinfectious chronic fatigue syndrome and noninfectious chronic fatigue syndrome

Abstract:

The prognosis after multidisciplinary treatment for patients with postinfectious chronic fatigue syndrome (CFS, n = 9) and noninfectious CFS (n = 9) was clarified. After treatment, natural killer (NK) cell activity increased in the postinfectious CFS group but did not recover to within normal range in the noninfectious CFS group. In the postinfectious CFS group, physical and mental symptoms improved, and 8 patients returned to work. In the noninfectious CFS group, symptoms did not improve, and only 3 patients returned to work. The prognosis of postinfectious CFS group was better than that of noninfectious CFS group. Classification of CFS patients into postinfectious and noninfectious groups is useful for choosing the appropriate treatment in order to obtain better prognosis.

Source: Masuda A, Nakayama T, Yamanaka T, Koga Y, Tei C. The prognosis after multidisciplinary treatment for patients with postinfectious chronic fatigue syndrome and noninfectious chronic fatigue syndrome. J Behav Med. 2002 Oct;25(5):487-97. http://www.ncbi.nlm.nih.gov/pubmed/12442563

Recovery from infectious mononucleosis: a case for more than symptomatic therapy? A systematic review

Abstract:

Infectious mononucleosis is usually an acute, transiently incapacitating condition, but for some sufferers it precipitates chronic illness. It is unclear which patients are at risk of a prolonged state of illness following onset of infectious mononucleosis and if there are any useful preventive measures that would facilitate recovery. The aim of this study was to review all cohort studies and intervention trials that provide information on: (a) the longitudinal course of ill health subsequent to the onset of infectious mononucleosis; (b) the relationship between psychosocial and clinical factors and recovery rate; and (c) the effect of interventions on recovery.

A systematic review was conducted, based on a search of the PSYCHINFO, MEDLINE, EMBASE and CINHAL databases up to October 2001, and ISI Science and Social Sciences Citation Indices up to 22 November 2001. Eight papers were identified that gave data on illness following onset of infectious mononucleosis. The best evidence concluded that there is a distinct fatigue syndrome after infectious mononucleosis. Eight papers explored risk factors for prolonged illness following acute infectious mononucleosis.

Results varied on the association of acute illness characteristics and psychological features with prolonged ill health. Poor physical functioning, namely lengthy convalescence and being less fit or active, consistently predicted chronic ill health. Three trials reported on interventions that aimed to shorten the time taken to resolve symptoms after uncomplicated infectious mononucleosis. None of the drug trials found any evidence that drug therapy shortens recovery time. The trial that compared the effect of activity with imposed bed rest, found that those patients allowed out of bed as soon as they felt able reported a quicker recovery. More information is needed on the course of ill health subsequent to the onset of infectious mononucleosis. Certain risk factors associated with delay may be amenable to a simple intervention in primary care.

Source: Candy B, Chalder T, Cleare AJ, Wessely S, White PD, Hotopf M. Recovery from infectious mononucleosis: a case for more than symptomatic therapy? A systematic review. Br J Gen Pract. 2002 Oct;52(483):844-51. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1316091/ (Full article)

Natural course and predicting self-reported improvement in patients with chronic fatigue syndrome with a relatively short illness duration

Abstract:

OBJECTIVE: To describe the course of fatigue in chronic fatigue syndrome (CFS) patients with a relatively short duration of complaints and to test which psychosocial factors predict spontaneous improvement 1 year later.

METHODS: Seventy-nine patients with a complaint duration of less than 2 years were tested at baseline and 78 of the same group at 1-year follow-up. During this time period, no systematic intervention took place. Self-reported improvement and fatigue severity were the main outcome measures.

RESULTS: Forty-six percent (95% confidence intervals, 95CI = 35-58%) of the patients with a short illness duration reported to be improved. This was a significantly (chi(2) = 20.3, P < .001) higher percentage compared to the 20% (95CI = 15-26%) self-reported improvement in a previously published natural-course study among 246 CFS patients with a longer illness duration. Persistence of complaints after 1-year follow-up was associated with high baseline levels of experienced concentration problems, less strong psychosocial causal explanations for the complaints, and higher levels of the experienced lack of social support. Baseline fatigue severity predicted fatigue severity at follow-up.

CONCLUSION: The results showed that CFS patients with a relatively short duration of complaints had a more favourable outcome compared to patients with a long illness duration. The data also indicated that complete recovery only occurred in patients with a complaint duration of less than 15 months. This finding has important implications, since it suggests that after such a time period spontaneous recovery hardly occurs.

Source: van der Werf SP, de Vree B, Alberts M, van der Meer JW, Bleijenberg G; Netherlands Fatigue Research Group Nijmegen. Natural course and predicting self-reported improvement in patients with chronic fatigue syndrome with a relatively short illness duration. J Psychosom Res. 2002 Sep;53(3):749-53. http://www.ncbi.nlm.nih.gov/pubmed/12217448

Longitudinal assessment of neuropsychological functioning, psychiatric status, functional disability and employment status in chronic fatigue syndrome

Abstract:

The longitudinal course of subjective and objective neuropsychological functioning, psychological functioning, disability level, and employment status in chronic fatigue syndrome (CFS) was examined. The relations among several key outcomes at follow-up, as well as the baseline characteristics that predict change (e.g., improvement), were also evaluated.

The study sample consisted of 35 individuals who met the 1988 and 1994 CFS case definition criteria of the Centers for Disease Control (CDC) at intake. Participants were evaluated a mean of 41.9 (SEM = 1.7) months following their initial visit (range = 24-63 months).

Results indicated that objective and subjective attention abilities, mood, level of fatigue, and disability improve over time in individuals with CFS. Moreover, improvements in these areas were found to be interrelated at follow-up. Finally, psychiatric status, age, and between-test duration were significant predictors of outcome. Overall, the prognosis for CFS appears to be poor, as the majority of participants remained functionally impaired over time and were unemployed at follow-up, despite the noted improvements.

Source: Tiersky LA, DeLuca J, Hill N, Dhar SK, Johnson SK, Lange G, Rappolt G, Natelson BH. Longitudinal assessment of neuropsychological functioning, psychiatric status, functional disability and employment status in chronic fatigue syndrome. Appl Neuropsychol. 2001;8(1):41-50. http://www.ncbi.nlm.nih.gov/pubmed/11388123

Can we predict recovery in chronic fatigue syndrome?

Abstract:

PURPOSE: To determine if selected demographic or clinical features of chronic fatigue syndrome (CFS) are associated with recovery.

PATIENTS AND METHODS: A follow-up questionnaire was mailed to 341 patients who had been ill on average for nine years to ascertain “recovery” rate (defined as self-reported recovery on a visual analog scale). Baseline demographic and clinical features (functional status and psychological status) recorded at the time of the initial (baseline) clinical visit were analyzed for their association with recovery at the time of follow-up.

RESULTS: Of the 177 patients who responded to the follow-up questionnaire, only 21 (12%) reported “recovery.” Patients with higher levels of physical and social functioning and lower levels of anxiety and obsessive-compulsiveness at baseline were more likely to report recovery at follow-up (p < 0.05). No specific demographic characteristics were associated with recovery.

CONCLUSION: These findings support previous research that complete recovery from CFS is rare and that patients with less severe illness at the initial clinic visit are more likely to have a positive prognosis for recovery. However, considerable overlap in illness severity was observed between the recovered and nonrecovered groups, suggesting that accurate prediction of recovery in individual CFS patients is not currently feasible.

Source: Pheley AM, Melby D, Schenck C, Mandel J, Peterson PK. Can we predict recovery in chronic fatigue syndrome? Minn Med. 1999 Nov;82(11):52-6. http://www.ncbi.nlm.nih.gov/pubmed/10589213

Prognostic factors for persons with idiopathic chronic fatigue

Abstract:

BACKGROUND: The simultaneous examination of a large number of patient characteristics in a prospective study of patients with chronic fatigue.

OBJECTIVE: To compare the relative importance of these characteristics as prognostic factors.

METHODS: The data analyzed were from 199 subjects in a registry of persons who were aged 18 years or older and had idiopathic fatigue for at least 6 months. All subjects completed an extensive baseline questionnaire that provided information about fatigue, demographic characteristics, medical conditions, lifestyle, sleeping habits, psychological characteristics, and the presence of criteria for chronic fatigue syndrome. Changes in fatigue severity from baseline to 2-year follow-up were tested for an association with risk factors at baseline and with changes in symptoms other than fatigue during the follow-up period.

RESULTS: The following characteristics at baseline significantly and independently predicted greater fatigue improvement: less unclear thinking, fewer somatoform symptoms not used to define chronic fatigue syndrome, infrequent awakening, fewer hours sleeping, and being married. Of 29 subjects who at baseline reported no somatoform symptoms unrelated to chronic fatigue syndrome and who thought clearly most of the time, 8 substantially improved, compared with 1 of 29 subjects who had more than 2 somatoform symptoms and never thought clearly (P = .01). Improvements in the following symptoms were significantly and independently associated with improvements in fatigue: unclear thinking, depression, muscle aches, and trouble falling asleep.

CONCLUSIONS: This study identified characteristics of subjects that seem to be of prognostic importance for idiopathic chronic fatigue. Symptoms that change concomitantly with changes in fatigue may be intrinsically linked to fatigue.

Source: Hartz AJ, Kuhn EM, Bentler SE, Levine PH, London R. Prognostic factors for persons with idiopathic chronic fatigue. Arch Fam Med. 1999 Nov-Dec;8(6):495-501. http://www.ncbi.nlm.nih.gov/pubmed/10575388

Natural history of severe chronic fatigue syndrome

Abstract:

OBJECTIVE: To evaluate the natural history of chronic fatigue syndrome (CFS) in a severely ill group of patients at three points in time.

DESIGN: Patients were enrolled from April 1992 to February 1994 and were evaluated three times. Time 1 (at enrollment): history, physical evaluation, and psychiatric evaluation; Time 2 (median = 1.6yrs after initial evaluation): postal questionnaire to assess current condition; Time 3 (median = 1.8 yrs after Time 2): medical and psychiatric evaluations.

SETTING: The New Jersey CFS Cooperative Research Center, an ambulatory setting.

PATIENTS: Twenty-three patients fulfilled the 1988 case definition for CFS and had symptom complaints that were substantial or worse in severity. All patients were ill less than 4.5 years; and none had a DSM-III-R psychiatric disorder in the 5 years before illness onset; none had substance abuse in the 10 years before enrollment.

MAIN OUTCOME MEASURES: Severity of CFS symptoms was assessed by self-report questionnaires, laboratory tests, and medical examination. Psychological status was assessed using the Q-D15 and the Centers for Epidemiological Study-Depression Scale. At each time of evaluation, patients were categorized as severe, slightly improved, improved, and recovered.

RESULTS: Over the 4 years of the study, 13 patients remained severely ill, 9 improved but still fulfilled the 1994 case definition for CFS, and 1 recovered. Illness duration, mode of onset, psychiatric status or depressed mood at intake, or chemical sensitivity did not predict illness outcome. One patient was diagnosed with an alternate illness, but it probably did not explain her CFS symptoms. Mood improved for those patients whose illness lessened.

CONCLUSIONS: The prognosis for recovery was extremely poor for the severely ill subset of CFS patients. The majority showed no symptom improvement and only 4% of the patients recovered. Illness severity between Times 2 and 3 remained stable.

Source: Hill NF, Tiersky LA, Scavalla VR, Lavietes M, Natelson BH. Natural history of severe chronic fatigue syndrome. Arch Phys Med Rehabil. 1999 Sep;80(9):1090-4. http://www.ncbi.nlm.nih.gov/pubmed/10489014