Recent Research into Diagnosis, Treatment and Prognosis of Chronic Fatigue Syndrome
Ludwig Lowenstein PH.D. Southern England Psychological Services
Abstract :
An attempt will be made to review the very recent literature and research (2003-2005) on chronic fatigue syndrome (CFS), concentrating especially on diagnosis, treatment and prognosis. Currently structured interviews, self-reported forms and tests have sought to diagnose CFS.
A number of treatments are currently in use, including CBT, and BT on its own, medication, nutrition and exercise, and self-help approaches. The comprehensive use of a combination of therapies that deal with the somatic and psychological features is also followed. A good prognosis is dependent on the effectiveness of treatment. This occurs haphazardly in individual cases only.
Diagnosis
A number of investigators have sought to diagnose the condition of CFS. Among the methods used have been questionnaires such as the Chalder's Fatigue Severity Scale (CH) and the Composite Fatigue Impact Scale (FI) which has three subscales; cognitive, physical and social. Naschitz et al. (2004) utilised these two questionnaires and also studied 30 additional questionnaires revealing correlation of CH versus FI cognitive scores. Fatigue severity as assessed by the uni-dimensional CH scale and the composite FI scale was comparable. The simple CH scale was adequate for assessment of the feeling of fatigue, in general, and for monitoring the severity of fatigue in CFS in particular.
Structured diagnostic interviews and self-rating scales were also of value, as noted by Friedberg (2003). Both formal and psycho-diagnostic interviews and psychometric instruments were applied to CFS in studying the population. Also measured by these tools was the capacity for coping by individuals who suffered from this condition, the amount of social support they had and the locus of control, as well as pain and illness attributions. The overlapping nature of the symptoms between physical and psychological were considered by Sharpe (2005). He felt it best to provide a separate diagnosis between medical and psychiatric signs. A number of investigators including Jason et al. (2005) considered the need for appropriate diagnosis of CFS subtypes. The review of further findings suggested that sub-typing individuals with CFS, on sociodemographic, functional disability, viral immune conditions, neuroendocrine problems, neurology, autonomic and genetic biomarkers, could provide clarification for researchers and clinicians who encountered CFS.
Afari et al. (2005) noted that debilitating fatigue was a common symptom of CFS and it appeared to affect all aged and socioeconomic groups as well as all races and ethnicities. CFS was frequently associated with irritable bowel syndrome and major depression. Bowen et al. (2005) felt that GPs needed evidence and guidance to help them diagnose and manage chronic fatigue syndrome. A postal questionnaire was sent to 1,054 GPs who served an area in England . The GPs attitudes to 9 statements about CFS (ME) were assessed and the factors associated with positive or negative responses were determined. The results were that 811 GPs (77%) returned the questionnaire. 48% of the GPs did not feel confident with making a diagnosis of CFS/ME and 41% did not feel confident in its treatment. 72% of the GPs accepted CFS/ME as a recognisable clinical entity and those GPs had significantly more positive attitudes towards patients and their complaints. Despite the publication of guidance for GPs on CFS/ME competence with making a diagnosis and management was found to be low. One of the later studies by Nijs et al. (2005) favoured the use of a participation questionnaire constructed on a retrospective analysis of Karnofsky Performance Status Questionnaire and the Activities of Daily Living Questionnaire. The CFS-APQ (Activities and Participation Questionnaire) correlated with visual analogue scales for pain (r = 0.51) and fatigue (r = 0.50).
Treatment and Care for those Suffering from Chronic Fatigue Syndrome
From the research literature it may noted that a number of treatment approaches are currently favoured. These include: a combination of somatic and psychological approaches, nutritional and medical procedures, behaviour therapy and cognitive behaviour therapy, exercise therapy, self-help and care, and other specific/general therapeutic methods.We will now consider the research into each of these procedures in turn.
Combination of Somatic and Psychological Approaches
Two questions were addressed by Jason & Taylor (2003). The first was: How could ecology-based responses be initiated to deal with multi-layered problems caused by CFS which severely interfered with the quality of life? The second was: What contributions could the ecological model offer to those interested in CFS research? Unfortunately no convincing answers were produced but this is made up for by Fennell (2003b) who asked clinicians to assess and treat patients in 3 domains: the physical-behavioural, the psychological, the social interactive. This model emphasised the importance of the interactions among the biological, psychological, and social domains of patients' lives. An earlier study by Fennell (2003a) indicated that it was necessary to apply a more comprehensive intervention that took into account interactions among the multiple domains in which patients experience CFS. A multidisciplinary approach which was comprehensive was also advocated by Jason, Fennell & Taylor (2003). The treatment included cognitive behaviour therapy, exercise therapy and nutritional approaches. These will be discussed.
Therapy needed to be an individually tailored procedure in regard to underlying or assumed causes. This was emphasised by Gaab (2004) who favoured a tailor-made programme which included psychobiological, psychotherapeutic and other methods used simultaneously.
Nutritonal and Medical Approaches
Three reasons for the use of nutritional methods were provided by Van Konynenburg (2003). The author blamed inadequate nutrition as possibly contributing to CFS. He considered nutritional approaches to be helpful in the treatment of CFS and considered that there was some evidence that some nutrients could act pharmacologically to produce beneficial effects in CFS. There were also foods or substances that were considered dangerous to CFS sufferers. This included the use of alcohol which was advised should cease altogether by Woolley, Allen, &Wessely (2004). A consecutive case series of 114 patients fulfilling UK criteria for CFS were found to be improved by the reduction of alcohol intake. It was noted that this decreased the tendency towards tiredness, sleep disturbance, and the capacity to seek and carry out effective employment.
A later study by Gaab (2005) suggested providing supplements of magnesium while Hartz et al. (2004) considered that fatigue could be reduced by the use of herbal treatments and most especially Siberian ginseng. This appeared to generally reduce fatigue severity. A further study by Bentler, Hartz & Kuhn (2005) of 155 subjects provided information on fatigue and treatment at baseline and follow-up. Of these subjects, 87% were female and 79% were middle-aged. The median duration of fatigue was 6.7 years. Treatment likely to be helpful in reducing fatigue was the use of coenzyme Q10, dehydroepiandrosterone (DHEA) and ginseng. Bentler et al. also recommended the use of vitamins, participating in vigorous exercise, yoga and the intake of magnesium.
Behaviour and Cognitive Behaviour Therapy
Van Hoof (2003) considered that chronic fatigue syndrome was very much influenced by psychological processes. Hence to treat the condition it was vital to use such methods as cognitive behaviour therapy. The purpose was to change cognitions and behaviour and control physical complaints. Stress could also be managed through relaxation training and improve the immune system functioning (Weiss, Helder, & Antoni, 2003). Cognitive behaviour therapy was also favoured by Wittkowski, Toye, & Richards (2004) as a way reducing fatigue and distress in a study of 5 outpatients with a diagnosis of CFS. The improvement was maintained at 3 months follow-up.
A combination of cognitive behaviour therapy and graded exercises was favoured by McCrone et al. (2004). The main outcome measure was clinically significant improvements in the form of reduced fatigue. The combined therapy group had significantly better outcome than the standard care group. It was also felt to be the two methods likely to be most cost effective. Similar results were obtained by Severens et al. (2004). Here cognitive behaviour therapy was combined with guided support groups. At 8 and 14 months, the percentages of improved patients were 31% and 27% for CBT, 9% and 11% for guided support groups, and 12% and 20% for no protocol-based interventions.
Bazelmans, Huibers, & Bleijenberg (2005) in a later study assessed the efficacy of cognitive behaviour therapy delivered by general practitioners to fatigued employees on sick leave. Unfortunately CBT in this study had no substantial effect on clinical outcomes. This may or may not be due to the fact that general practitioners rather than psychologists or psychiatrists administered the treatment. A combinaton of cognitive behaviour therapy and group therapy was used successfully by Saxty & Hansen (2005). It was also felt that this was another procedure that was cost effective.
Finally, Bazelmans et al. (2005) in a later study demonstrated that individual cognitive behaviour therapy was an effective treatment for CFS, again combined with group therapy using a cognitive behavioural approach. This verified the previous study as a useful adjunct to cognitive behaviour therapy. There was on the whole a moderate effect on fatigue, and patients had less complaints about their condition.
Exercise Therapy
Patients were educated to encourage that they participated in graded exercises for a period of time with a 2 year follow-up. At the two-year follow-up, 63 of the treated patients (55%) no longer fulfilled the criteria of CFS compared with 64 patients (56%) at 1 year. 14 of the 30 cross-over patients (47%) achieved a good outcome at 1 year, and 7 (23%) not longer fulfilled the criteria of CFS. The conclusions were that there were benefits to the intervention of exercise therapy (Powell et al., 2004). In another study again using exercise therapy the exercise group graded themselves as significantly more improved and less fatigued than the control group in a study by Moss-Morris et al. (2005).
Exercise treatment approaches had also been used by Clark & White (2005). These investigators found that graded exercise therapy aimed to reverse the tendency of inactivity amongst CFS clients. Exercise de-conditioned the sedentary habit which was often associated with CFS individuals. The conclusion they reached was that graded exercise had an important role to play in the treatment of patients with CFS. They however, felt that further work was necessary to elucidate the risks, benefits, and mechanisms of such treatment, especially in children and the severely disabled. In the case of patients without comorbid psychiatric disorders there was a likelihood that they did not suffer from exercise phobia or the avoidance of exercise as noted by Gallagher et al., (2005); and Snell et al. (2003).
Self-Help and Care
Many patients with CFS responded well to support groups as these offered vital avenues for the exchange of information between patients. Many patients reported that they received this type of help from others suffering from a similar condition. The author Sterling (2003) considered it odd that there was a strong undercurrent of public and professional opinion against CFS support groups. He asserted that CFS groups could achieve a greater success in the future. Similar information was obtained by Prins et al. (2004). According to Lipczynska (2005) there were a number of practical help groups available including: the ‘ME Association', ‘Action for ME', ‘CFIDS Association of America', ‘Support ME and ‘About Chronic Fatigue'.
Most important during such meetings was the sharing of experiences of illness and the symptoms thereof. 3 main types of narrative were found within such meetings: self-contained personal stories, orchestrated chained personal stories, and co-narrated collectivised stories. Through such interactions, individual sufferers could compare themselves to others and there was an active sharing of experiences which bestowed a mutual confirmation of suffering irrespective of whether the individual's experiences corresponded or deviated from the common picture ( Bulow, 2004).
Other Specific/General Therapeutic Procedures
One approach favoured by Van Hoof et al. (2003) was the use of hyperbaric oxygen treatment (HBOT). The result of such treatment was to reduce fatigue, increase levels of activity and an improved reaction time as well as improved quality of life through enhanced functioning. The authors felt that it could be used as an adjunctive treatment with other methods being employed. McDermott et al. (2004) favoured the use of group outpatient lifestyle management sessions, a form of occupational therapy. This appeared to encourage a restructuring of lifestyle and facilitated an improvement in the reduction of fatigue and other disabling functions. The primary outcome hoped for was a return of the patient to employment, voluntary work or training. Among the treated patients, 42% reported new part-time or full-time employment, voluntary work or training.
At least one study preferred the use of medication combined with behaviour therapy and exercise therapy. Of particular value was found to be modfinil which was a central nervous stimulant used in the treatment of narcolepsy (Turkington et al. 2004). Another approach using homeopathic medication was argued by Weatherley-Jones et al. (2004). They evaluated homeopathic treatment in reducing subjective symptoms of CFS. It was claimed that homeopathic medicine showed clinical improvement of a significant kind. Ryan & Gevirtz (2004) sought to determine whether an intervention labelled “biofeedback” could be implemented with patients who were diagnosed with such conditions as functional disorders (irritable bowel syndrome, fibromyagia/chronic fatigue syndrome, myofascial pain, anxiety with somatic features, or non—cardiac chest pain). All those treated by this approach completed a symptom diary while working with a biofeedback therapist. Patients who received such treatment had lower symptom frequency.
Meditation was found to be of some value by Surawy, Roberts, & Silver (2005). The practice of meditation appeared to reduce stress and other symptoms of CFS. It also reduced anxiety and a tendency towards feeling fatigued. Since psychological symptoms were closely associated with CFS, Rakib et al. (2005) considered it important to deal with depression which was most often closely associated with CFS. Depression was found to be more closely associated with subjective quality of life feelings and hence an improvement in this area was likely to improve the total individual.
An unusual approach termed ‘thermal therapy' advocated by Masuda et al. (2005) consisted of repeated thermal therapy. The treatment consisted of a far-infrared ray dry sauna at 60 degrees centigrade. The subjects studied continued the therapy once or twice a week on an out-patient basis. Symptoms such as fatigue, pain, sleep disturbance, and low grade fevers were dramatically reduced after 15-25 sessions of thermal therapy. These patients also became socially rehabilitated to a large degree. Finally, it was important to mention the views of Van Damme et al. (2004). These investigators painted a rather dismal picture of the efficacy of such approaches as cognitive behaviour therapy and considered it best to accept whatever symptoms that occurred needed to be viewed as leading to a better quality of life. The authors attempted to demonstrate that acceptance resulted in higher emotional stability and fewer psychological problems. The concept of acceptance hence was viewed as being a useful addition to current models and treatments of CFS. Hence a combination of acceptance, while treating the symptoms of CFS had a valuable input.
The Prognosis of CFS
There have been relatively few studies that have considered the prognosis for overcoming the symptoms associated with chronic fatigue. Schmaling et al. (2003) considered the following factors to be associated to a poor prognosis. They included having had less education, being unemployed, suffering from worse mental health and having used more sedating and antidepressant medications. These factors were associated with worsening symptoms over time. Older age, current depression, and more somatic attributions predicted again worsening physical functioning. Better mental health, less use of sedating medication, and fewer somatic attributions for illness were significant predictors of increased in vitality. Chalder et al. (2003) found factors that predicted a poor outcome were: poor social adjustment at assessment; the patients' self-report that they had never seen a GP for an emotional reason; a physical illness attribution; and a long perceived future illness duration. Those who received psychological treatment were likely to have a better chance of improving.
Reduced activity was the most consistent factor found to be associated with poor outcome following the onset of infectious mononucleosis (IM) for ME (Candy et al. (2003). Certain illnesses beliefs also were associated with poor outcome. Huibers et al. (2004) investigated predictors of fatigue and CFS in general. Recovering from persistent fatigue and work resumption seemed to be the underlying predictors of good outcome. Similar results were obtained by Darbishire, Seed & Ridsdale (2005). They considered the perceived negative consequences or positive consequences of treatment, as being indicators of likely good outcome. There appeared to be an important difference in outcome between the various fatigue labels, with ME having the worse prognosis and postviral fatigue syndrome (PVFS) the best. Hamilton et al. (2005) attributed the difference possibly being due to the ME label applied to certain individuals who then acted out their symptoms extensively.
Summary
There have been a number of diagnostic approaches dealing with CFS. One researcher considered 30 types of questionnaires revealing correlation with CH versus FI cognitive scores. Among those used are the Chalder's Fatigue Severity Scale (CH) and the Composite Fatigue Impact Scale (FI). Areas measured were social support or lack of it received, locus of control, pain and fatigue symptoms. Currently 72% of GPs accept the CFS/ME as a recognisable clinical entity.
Treatment approaches used with CFS include a combination of treatments of somatic and psychological methods, nutritional and medical procedures, behaviour therapy, and cognitive behaviour therapy, exercise therapy, self-help care and group therapy. A number of investigators considered it important to apply more than one, and hence a comprehensive intervention procedure. This also included pharmacological methods using drugs.
There have been very few studies which have considered the prognosis of CFS. Poor outcomes were predicted by poor social adjustment, physical illness attributions and the failure to receive psychological treatment. Strong linkage between psychological problems and somatic problems necessitates a comprehensive rather than selective approach to treatment.
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