Fatigue 2000 International conference 230499
Friday & Saturday 23-24 April 1999
Cox D, Senior Lecturer, Faculty of Health, South Bank University, Southwark, SE1 OAA
Findley LJ, Consultant Neurologist, Chronic Fatigue Syndrome Diagnostic and Management Service, Essex Centre for Neurological Sciences, Oldchurch Hospital, Romford, Essex.
ABSTRACT: The Chronic Fatigue Syndrome (CFS) Service within the Essex Neuroscience's Centre has been developing since 1990. The service was established as a comprehensive diagnostic and management service in July 1994. From May 1990 to March 1998, 318 patients with CFS were admitted into the programme and since November 1994, 1189 patients seen as outpatients. A previous survey indicated a positive perceived change in level of ability following the inpatient programme for all levels of CFS from mild to very severe (1). Of those admitted since 1990. 55 were severely affected (extremely testricted mobility) and 31 very severely affected (totally bed bound).
Most studies on CFS do not include the more severe expressions of the disease, therefore this paper aims to show the perceived outcome of these more severely affected patients following the inpatient programme. In particular, the eventual diagnosis, the specific approach to treatmeat and management and grading of patients will be described and the potential influence of the programme presented. The patients not diagnosed with CFS on discharge did least well at follow up.
1. Cox D.L, Findley LJ 1998 The Management of Chronic Fatigue Syndrome in an Inpatient Setting: Presentation of an approach and perceived outcome. Britisch Journal of Occupational Therapy 61;9:405 - 409
Len M, Sykes R, 15 Queen Victoria Road, Redland, Bristol, BS6 7PE.
ABSTRACT: 3 week-long courses were held in October 1995 in some country cottages near Monmouth. There were 18 participants with CFS/ME. 11 females and 7 males. The average age was 50 years and the median duration of illness was 7 years.
The course involved talks and discussions with a doctor, occupational therapist, nutritionist and counsellor. Techniques for energy management and stress management were taught and activity baselines and daily schedules were agteed.
Self-report questionnaires after 12 months show; - considerable improvement in average scores for functional ability (+22%), fatisue (-21%) and emothional distress (-24%) - some improvement in average scores for cognitive difficulty (-13%) - some deterioration in average scores for somatic (ie. bodily) symptoms (+11%)
Comments: Given the high average age (50) of participants, the long median duration of the illness (7 years) and the brief intervention period (1 week), the results are regarded as most encouraging.
(Note: changes in scores do not imply a correstponding degree of change in underlying symptoms. They do however provide a first rough guide to comoarative changes)
Barker L, CFS Service, BUPA Hartswood Hospital, Eagle Way, Brentwood. Essex, CM13 3LE.
ABSTRACT: Over the past two years the Chronic Fatigue Syndrome (CFS) Diagnostic and Management Outpatient Services of Havering Hospitals NHS Trust have expanded rapidly. The aim of the presentation is to investigate their outcome through results of an audit camed out on an outpatient group programme.
A questionnaire was sent to all participants who attended an outpatient group programme between 1995 and 1997 (n=58). All participants fulfilled the CDC criteria for CFS as defined by Fukuda et al (1994). The audit results are based on the patient's perception of their level of ability at 3, 6, 12 and 18 months post programme.
Results indicate that 71% of patients have improved. Preliminary exploration of the data indicates that there is a moderate to substantial increase in activity levels at 18 months. A number of patients have returned to work or college. The findings will be discussed further in the presentation.
The results demonscrate interesting links to duration of symptoms and occupation, also highlighting a number of perceived perpetuators of CFS. It is anticipated that the findings will enable further development of outpatient services to provide a comprehensive management approach to this illness.
Fukuda et al. 1994 CFS: A comprehensive approach to its definition and study. Am. Coll. Phys. 121;953-959.
Cimoch P. Chou S, Chang J. Tilles J. University of Callornia, Irvine, Dept. of Medicine, Orange, CA 92669, USA.
ABSTRACT: In humans, eight monosaccharides are required for ths synthesis of glycoproteins. Dietary supplements that supply these crucial sugars are known as glyconutrients. A glyconutrient compound was added to Peripheral Blood Mononuclear Cells (PBMC) isolated from normal controls and patients with the Chronic Fatigue Syndrome (CFS), a disease associated with immune dysregulation. The in vitro immunomodulatory effects were investigated. Cell surface expression of the glycoproteins CD5, CD8 and CDlla were significantly reduced in patients with CFS compared to normal controls. Addition of glyconutrient homogenate to PBMC from patients with CFS stimulated with phytohemagglutinin significantly increased the expression of each glycoprotein. Furthermore. Natural Killer (NK) cell function was reduced in CFS patients. The glyconutrient preparation significantly increased NK cell activity versus human herpes virus 6 (HHV-6) infected H9 cells in an 8 h 51Cr release assay compared to placebo for PBMC from patients with CFS (pc01). Finally, apoptosis was significantly increased in patients with CFS. The percentage of apoptotic cells was significantly decreased in PBMC from patients with CFS that had been incubated for 48 hr with glyconutrients. Thus, glyconutrients improved abnormal immune parameters in vitro in patients with CFS.
Kelly C, Wood L, School of Biological and Biomedical Sciences, Glasgow Caledonian University, Cowcaddens Road, Glasgow G4 OBA, Scotland.
ABSTRACT: Central nervous system of 5-hydroxytryptamine (5-HT) and sensitivity to 5-HT may be higher in patients with CFS which may be partly responsible for their symptoms of fatigue. The levels of plasma tryptophan (a precursor of central 5-HT) are influenced by dietary factors such as intake of tryptophan, protein, carbohydrate and fatty acids. The aim of this study was to assess the nutritional status of patients with CFS, making reference to these factors as well as energy intakes. Experiments were camed out on nine patients satisfying CDC criteria for CFS and matched sedentary controls, who completed 2 x 4-day weighed food records and had resting metabolic rate (RMR) measurements taken. Preliminary results suggest that differences in dietary intakes of tryptophan, protein, carbohydrate and fat were small and not significant. Similarly, RMR was not significantly different in CFS patients, although mean energy intake was significantly less 100.8 kJ/jg versus 129.3 kJ/kg;p<0.05). Mean daily intake of glucose was also significantly lower (136.2 mg/kg versus 267.7 mg/kg, p<0.05). These results suggest that baseline nutritional factors alone may not influence central levels of 5-HT differently in CFS and control subjects. However, further experiments are required to investigate whether dietary manipulation can do this.
van der Werf S.P, Bleijenberg G, Prins J.B, Vercoulen J.H.M.M, van der Meer I.W.M, Dutch Fatigue Research Group. Dept. of Medical Psychology and Internal Medicine, University Hospital Nijmegen, the Netherlands.
ABSTRACT: A movement sensing device was used to register physical activity over a 12 day period in 277 CFS patients. The goal was to identify physical activity patterns and develop parameters to describe intra-individual physical activity patterns in more detail. Based on the 12 day registration period. the individuals' ten largest physical activity peaks were computed. The intensity and duration of these ten largest activity peaks were compared to those of healthy controls. In addition, the characteristics of the subsequent rest periods were analysed. Furthermore, it was tested whether the CFS groups. compared to controls, displayed larger day to day fluctuations in physical activity.
During the 12 day period, the CFS group was physically less active compared to healthy controls. Approximately one quarter of the CFS sample differed distinctly from the control group and were labelled as pervasively passive. The remaining CFS patients were also less active compated to controls, but the intensity of their activity peaks and the duration of the subsequent rest periods did not differ significantly. Furthermore, this CFS subgroup was not characterised by abnormally long rest periods, large day to day fluctuations or short extreme activity periods. Accurate measurements of the individuals' physical activity can perhaps be used to optimise behavioural protocols for CFS patients.
Econs A. 29 Hersham Road, Walton on Thames, Surrey, KT12 1LF.
ABSTRACT: Clinical research recognises 'otherwise unexplained fatigue' as a manifestation of the struggle of the immune system to adapt inan ever changing environment. Many other chronic ar recurrent conditions are constantly exposed as having similar origins. Their aetiology is often linked with food and chemical intolerance, inhalant allergy, gut fermentation and nutritional deficiencies. Addressing these factors results in the partial or complete reversal of these syndromes.
In an era when the link between our diet and cancer or cardiovascular disease is confirmed, a great challenge to modan medicine is to elucidate the many factors causing common diseases and instigate a permanent cure - not a mere suppression of symptoms. The British Society of Allergy Environmental and Nutritional Medicine (BSAENM) is a registered medical chanty aiming to help other doctors achieve this for their patients.
van der Werf SS, van den Broek H.L.P, Anten H.W.M, Bleijenberg, Dutch Fatigue research Group. Dept. of Medical Psychology, University Hospital Nijmegen; Dept. of Neurology. Maasland Hospital Sittad; the Netherlands.
ABSTRACT: The aims of this study were to test whether severe fatigue is a persistent symptom long after a cerebrovascular accident and to assess whether experienced fatigue is related to levels of physical impairment, depression or lesion location.
Ninety CVA outpatients and fifty controls returned the mailed questionnaires. CVA respondents and non-respondents did not differ on demographical or radiological data. Compared to age matched controls, a significantly larger proportion (16% versus 51%) of the CVA respondents indicated on a standardised fatigue questionnaire that they experiencsd severe fatigue. Significantly less CVA patients could be classified as depressed. In the control group the number of depressive symptoms explained most of the variance in levels of fatigue, while in the CVA sample impairment in locomotion was the best predictor. Age, gender or the time passed since the CVA, did not relate to levels of fatigue. Patients with unilateral right-sided lesions reported significantly more fatigue, depressive symptoms and general disability.
This study indicates that the experience of severe fatigue after stroke is a persisting and important problem. Psychological distress and physical impairment seem to mediate fatigue, but the data also suggests that in CVA-patients neurological mechanisms perhaps directly inauence levels of experiencsd fatigue and depression.
van Rensburg C.EJ, Joone G. Dekker J, Department of Inmunology, University of Pretoria, South Africa.
ABSTRACT: A South African Company (ENERKOM Pty)Ltd) has developed a unique process to convert bituminous coal by controlled wet oxidation, followed by base treatment, to form a water-soluble oxihumate. We have studied the effects of oxihumate, prepared by this company, on various human lymphocyte functions in vitro. Oxihumate increased the proliferative response of PHA-stimulated lymphocytes from a concentration as low as 20 ug/ml. It also increased the expression of CD25 significantly on PHA-stimulated cells, whereas the expression of CD38 on these cells decreased. This compound significantly increased the secretion of Il2 into the medium by PHA- stimulated lymphocytes whereas the secretion of IL10 was inhibited and the NK cell activity of both resting and PHA-stimulated lymphocytes, using a human liver cancer cell line as the target, was increased.
Oxihumate did not produce any measurable toxicity in experimental animals. This lack of toxicity combined with it's impressive immunomodulatory properties, therefore, make it a priority candidate for evaluation in the treatment of diseases (such as Chronic Fatigue Syndrome) associated with (i) Wal infections, (ii) a decreased lymphoproliferative response, and (iii) decreased cytokine levels associated with TH1 cell function, and (iv) decreased NK cell activity.
Norman A, White C, CFS Team. Newology OKice, 1st floor 'A' Block, Oldchurch Hospital Romford, Essex, RM7 OBE.
ABSTRACT: The poster has been put together by two counsellors who work within the CFS Team at Oldchurch Hospital.
The aim of the poster is to give insight into the role of counselling within the treatment of CFS.
It covers topics such as: What is counselling? Its place within the treatment of CFS, limitations of working with CFS, illness related issues, appropnate referrals and other topics.
Alberts M. Bleijenberg G. Klein Rouweler E.H, Prins J.B, van der Meer L.W.M; Dutch Fatigue Research Group, Dept. of Medical Psychology and Internal Medicine, University Hospital Nijmegen, The Netherlands.
ABSTRACT: Bedridden patients are systematically underrepresented in studies on CFS since these patients are not capable of visiting the research centres. The objective of this study was to describe patient characteristics, severity of fatigue, psychiatric morbidity, and other fatigue related factors and to compare these data with a matched non-bedridden group of CFS patients.
Twenty bedndden CFS patients were visited at their homes. During two weeks the patients rated their fatigue and pain through self-observation four times daily. An actometer (an apparatus recording the acfivity level) was wom during the same period. They completed also several questionnaires. Furtermore an interview was performed to determine psychiatric morbidity and the Karnofsky score. Comparison data of 33 non-bedridden CFS patients was available.
In comparison to non-bedridden CFS patients, bedridden patients are more fatigued, experience more impairment in basic activities, and are less active. Bedridden patients appear more focused on physical discomfort and report more physical complaints. Clinical evaluation confirmed the significant lower functional status (Karnofsky score) in bedridden patients. They do not differ in self-reported measures of psychological well being, although current psychiatric disorder was present in almost half the group. Present psychiatric disorder was diagnosed more often in the bedridden group than in the comparison group.
Prins J.B, Bleijenberg G. Klein Rouweler E.H, Bazelmans E; Dutch Fatigue Research Group, Dept. of Medical Psychology. University Hospital Nijmegen, Netherlands.
ABSTRACT: CFS patients often complain about informational and emotional support from their doctors. The aims of the present study were to investigate whether family doctors use the diagnosis CFS and whether they feel able to give sufficient information about CFS. Opinions of patients as well as family doctors about causes of CFS and about the doctor-patient relationship were compared.
In total 121 family doctors completed questionnaires. From 211 CFS patient's data concerning causal attributions and doctor-patient relationships were analysed as well.
Less than one half of the family doctors used the diagosis CFS. Only 10% of the family doctors felt able to give sufficient information about CFS. Concerning their attitude towards CFS patients half of the family doctors stated that they could sympathise less with the complaints of these patients than with the complaints of other patients. As to the causes for CFS a large discrepancy between family doctors and CFS patients was found. Patients consider mainly physical attributions for their complaints, whereas family doctors mainly attribute the complaints to psycho social factors.
Both family doctors and patients experience problems in their relationship. Based on these results family doctors are recommended to improve the relationship with CFS patients.
Hill F. LeBoutillier C, Leuchars C, Page H. CFS Team, Neurology Office, Ist floor 'A' Block. Oldchurch Hospital, Romford, Essex, RM7 OBE.
ABSTRACT: A poster to identify and assess the use of relaxation in Chronic Fatigue Syndrome (CFS) will be presented.
Research is currently under development by the CFS Team at Oldchurch Hospital Romford, Essex to examine the innuence of relaxation on enhancing effective rest in Chronic Fatigue Inpatients. Effective rest is measured by a reduction in blood pressure, heart rate and respiration rate, and an increase in blood flow. The primary focus of the current study is to collect outcome data with regards to changes in blood pressure pre and post relaxation.
It is anticipated that the results of this study will educate patients on the benefits of relaxation and will encourage self-management of chronic fatigue symptoms.
The poster will explore: types of relaxation, aims of relaxation, overview of the research study, study outcomes to date and discussion - including confounding variables and limitations of the srudy to date.