Patients with chronic fatigue syndrome are being ignored

Comment on: What causes chronic fatigue syndrome? [BMJ. 2004]

 

Editor—Earlier this year more than 28, 000 people signed a petition calling for urgent government funded research into the physical causes of myalgic encephalomyelitis and chronic fatigue syndrome. Such is the frustration of people who do not believe that their views are being listened to by the medical establishment.

So White’s editorial reviewing the possible causes of myalgic encephalomyelitis and chronic fatigue syndrome should be welcome news.1 But is it?

Many doctors support the idea of a disease model with predisposing, precipitating, and perpetuating factors. However, White does not offer any innovative suggestions as to how this could be used to better understand an illness that now covers a wide variety of clinical presentations and an equally diverse range of patho-physiological findings. Having created this mess, the medical profession must now accept that this heterogeneous group of patients is unlikely to have the same pathoaetiology and respond to the same form of treatment, be it pharmacological or behavioural.

What is needed is thought provoking research that dispenses with the oversimplistic view that myalgic encephalomyelitis and chronic fatigue syndrome entail little more than a vicious circle of abnormal illness beliefs and behaviour, inactivity, and deconditioning. The World Health Organization now classifies both myalgic encephalomyelitis and chronic fatigue syndrome as neurological disorders in section G93.3 of ICD-10. The time has come to look at the neurology of central fatigue—instead of pouring yet more money into the bottomless pit of psychological research.

You can read the rest of this article herehttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC535506/

 

Source: Shepherd C. Patients with chronic fatigue syndrome are being ignored. BMJ. 2004 Dec 11;329(7479):1405. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC535506/ (Full article)

 

Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: randomised controlled trial

Erratum in: BMJ. 2005 Apr 9;330(7495):820.

 

Abstract:

OBJECTIVE: To evaluate the efficacy of cognitive behaviour therapy for adolescents aged 10-17 years with chronic fatigue syndrome.

DESIGN: Randomised controlled trial.

SETTING: Department of child psychology.

PARTICIPANTS: 71 consecutively referred patients with chronic fatigue syndrome; 36 were randomly assigned to immediate cognitive behaviour therapy and 35 to the waiting list for therapy.

INTERVENTION: 10 sessions of therapy over five months. Treatment protocols depended on the type of activity pattern (relatively active or passive). All participants were assessed again after five months.

MAIN OUTCOME MEASURES: Fatigue severity (checklist individual strength), functional impairment (SF-36 physical functioning), and school attendance.

RESULTS: 62 patients had complete data at five months (29 in the immediate therapy group and 33 on the waiting list). Patients in the therapy group reported significantly greater decrease in fatigue severity (difference in decrease on checklist individual strength was 14.5, 95% confidence interval 7.4 to 21.6) and functional impairment (difference in increase on SF-36 physical functioning was 17.3, 6.2 to 28.4) and their attendance at school increased significantly (difference in increase in percentage school attendance was 18.2, 0.8 to 35.5). They also reported a significant reduction in several accompanying symptoms. Self reported improvement was largest in the therapy group.

CONCLUSION: Cognitive behaviour therapy is an effective treatment for chronic fatigue syndrome in adolescents.

Comment in: Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: data are insufficient and conclusion inappropriate. [BMJ. 2005]

 

Source: Stulemeijer M, de Jong LW, Fiselier TJ, Hoogveld SW, Bleijenberg G. Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: randomised controlled trial. BMJ. 2005 Jan 1;330(7481):14. Epub 2004 Dec 7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC539840/ (Full article)

 

Predictors of outcome in fatigued employees on sick leave: results from a randomised trial

Abstract:

OBJECTIVE: The main objective of this study was to identify predictors of fatigue caseness, work resumption and chronic fatigue syndrome (CFS)-like caseness in a sample of fatigued employees on sick leave.

METHODS: For 12 months, 151 fatigued employees on sick leave, 44% of whom met research criteria for CFS at baseline, were followed. Measures included fatigue, health aspects, psychological problems, burnout, causal attributions and self-efficacy. Logistic regression analysis was used to determine associations between predictor variables at baseline and outcome at follow-up.

RESULTS: After 12 months, 43% of the patients were no longer fatigue cases, and 62% had resumed work. Recovery from fatigue caseness was predicted by stronger psychological attributions and other perception-related factors, whereas work resumption was predicted by lower age, male sex, CFS-like caseness and less cognitive difficulties. Lower physical functioning scores were predictive of (the development of) CFS-like caseness.

CONCLUSION: Recovering from persistent fatigue and work resumption seem to result from different underlying processes and do not necessarily fall together. As many factors associated with outcome in fatigue reflect illness perception, the prevention of persistent fatigue and CFS may partly be achieved by the modification of perception.

 

Source: Huibers MJ, Bleijenberg G, van Amelsvoort LG, Beurskens AJ, van Schayck CP, Bazelmans E, Knottnerus JA. Predictors of outcome in fatigued employees on sick leave: results from a randomised trial. J Psychosom Res. 2004 Nov;57(5):443-9. http://www.ncbi.nlm.nih.gov/pubmed/15581647

 

What causes chronic fatigue syndrome?

Comment in: Patients with chronic fatigue syndrome are being ignored. [BMJ. 2004]

Comment on: Childhood predictors of self reported chronic fatigue syndrome/myalgic encephalomyelitis in adults: national birth cohort study. [BMJ. 2004]

 

Chronic fatigue syndrome, also known as myalgic encephalomyelitis, is an illness of unknown nature and cause, but most medical authorities now accept its existence.1-3 Research about its cause has been hampered by the absence of a biological marker, the heterogeneous nature of the illness, and difficulties in differentiating cause from effect.2,3 Yet, some progress has been made, particularly when causes are divided into predisposing, triggering, and maintaining factors.

Women get chronic fatigue syndrome more commonly than men for unknown reasons, although increasing evidence suggests a genetic influence on the illness.1,3 Premorbid mood disorders are replicated risk markers for chronic fatigue syndrome;1,3 the risks may be inflated by shared symptoms or they may be markers for those patients with comorbid mood disorders.1,3-5 Another replicated premorbid risk marker is increased consulting of a doctor for minor illnesses up to 15 years before diagnosis,w1 w2 suggesting a general vulnerability for either ill health or seeking health care, the latter possibly being mediated by comorbid anxiety.4

You can read the rest of this comment here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC524091/

 

Source: White PD. What causes chronic fatigue syndrome? BMJ. 2004 Oct 23;329(7472):928-9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC524091/ (Full article)

 

Manual-based cognitive behaviour therapy for chronic fatigue syndrome: therapists’ adherence and perceptions

Abstract:

Several randomized controlled trials have indicated that cognitive behaviour therapy is an effective treatment for chronic fatigue syndrome. In 1 of these studies 13 therapists applied cognitive behaviour therapy for chronic fatigue syndrome in 83 chronic fatigue syndrome patients.

In the present study therapists’ adherence and perceptions of the manual are studied. Following completion of the study the therapists were asked to complete a questionnaire. Audiotaped sessions were conducted to verify the therapists’ adherence. Analyses of the audiotapes showed that in 87% of the sessions this appeared to be the case.

The questionnaire revealed that the therapists found it more difficult to treat patients with chronic fatigue syndrome than to treat patients with psychological or other physical problems. Treatment aspects posing the most problems were integrating individual problems into the standardized treatment, dealing with the patients’ lack of confidence in the treatment and handling insufficient motivation.

 

Source: Bazelmans E, Prins JB, Hoogveld S, Bleijenberg G. Manual-based cognitive behaviour therapy for chronic fatigue syndrome: therapists’ adherence and perceptions. Cogn Behav Ther. 2004;33(3):143-50. http://www.ncbi.nlm.nih.gov/pubmed/15471384

 

Harmful psychiatrization

Ulrik Fredrik Malt’s response( 1 ) to my post about myalgic encephalomyelitis / chronic fatigue syndrome in the journal no. 9/2004 ( 2 ) and what he calls the ME group, is irrelevant to the core issue. Is the response really an apologia for his own views and practices, a practice that does not conform with practices at other university hospitals? Other universities conform correctly to ICD-10, which classifies myalgic encephalomyelitis / chronic fatigue syndrome as a neurological disorder (diagnostic code G93.3), and have introduced the new clinical criteria ( 3 ). It is not up to individual doctors to classify a disorder in the category that suits them. It is evident that the Malt places himself above ICD-10.

Myalgic encephalomyelitis / chronic fatigue syndrome has more than 30 years been classified as a neurological disorder and will remain so in the upcoming revision of the ICD. The psychiatrization which has been ongoing for many years, has caused major problems for those affected. Patients are ignored, rejected, distrusted, persecuted, mistreated, not taken seriously and suspected of malingering. Contagion and disability are downplayed, and many patients do not get Social Security benefits and assistance on a par with other seriously ill patients. Under the auspices of the US Department of Health a declaration has been adopted which states that “patients have been harmed as a result of disrespect, indifference and ignorance of the medical community” ( 4 ). According to the statement, one must “aggressively embark on disrespect that these patients meet both the general population and the medical community.” It stressed further that there is an urgent need for training of health professionals. In this connection healthcare professionals are advised not to read about myalgic encephalomyelitis / chronic fatigue syndrome in textbooks of psychiatry and instead read other research and literature ( 5 ).

Psychiatrization and trivialization of this suffering must end and textbooks corrected. Health authorities should urgently address this issue as they have done in England.

You can read the rest of this comment here: http://tidsskriftet.no/article/1045776

 

Source: Stormorken E.  Harmful psychiatrization. Tidsskr Nor Laegeforen. 2004 Jul 1;124(13-14):1826-7; author reply 1827. [Article in Norwegian] http://tidsskriftet.no/article/1045776 (Full article)

 

Temporal relations between unexplained fatigue and depression: longitudinal data from an international study in primary care

Abstract:

OBJECTIVE: Unexplained fatigue syndromes, such as chronic fatigue syndrome and neurasthenia, are strongly associated with depression, but the temporal nature of this association is not clear.

METHODS: The authors examined this issue by using data from the World Health Organization collaborative study of psychological problems in general health care. Three thousand two hundred one subjects from 15 primary care centers in 14 countries were followed up for 12 months. The Composite International Diagnostic Interview was the main instrument used. Odds ratios and their 95% confidence intervals (CI) were calculated using logistic regression models adjusted for sociodemographic variables, physical morbidity and intercenter variability.

RESULTS: Cases of depression were found to have an increased risk of developing a new episode of unexplained fatigue at follow-up with an adjusted odds ratio of 4.15 (95% CI = 2.64-6.54). Similarly, cases of unexplained fatigue were found to have an increased risk of developing a new episode of depression at follow-up with an adjusted odds ratio of 2.76 (95% CI = 1.32-5.78). Further adjustment for subthreshold symptoms at baseline weakened the reported associations, especially between fatigue and development of a new episode of depression, but these remained significant.

CONCLUSIONS: The findings support the view that unexplained fatigue and depression might act as independent risk factors for each other.

 

Source: Skapinakis P, Lewis G, Mavreas V. Temporal relations between unexplained fatigue and depression: longitudinal data from an international study in primary care. Psychosom Med. 2004 May-Jun;66(3):330-5. http://www.ncbi.nlm.nih.gov/pubmed/15184691

 

Heresies in textbook on psychiatry

In journal no. 5/2004( 1 ) reported Textbook of Psychiatry by Ulrik Fredrik Malt et al ( 2 ). This book contains erroneous information relating to the description of neurasthenia. The authors classify chronic fatigue syndrome (CFS), post-viral fatigue syndrome (PVFS) and myalgic encephalomyelitis (ME) as neurasthenia, diagnosis code F48.0, and has thus reclassified suffering from a neurological condition to be a psychiatric condition. This was done in Malts first textbook of psychiatry, published in 1994.

WHO has since 1969 classified Thurs the 1st as neurological disease and is not going to change that in the upcoming revision. The English psychiatrists Simon Wessely, Michael Sharpe and their counterparts, often called Wessely School, has spent countless publications in more than a decade trying to to psychiatric ME / CFS, which in part has been internationally condemned.

Leading Norwegian psychiatrists are influenced by Wessely School doctrine, and this doctrine has been continued in Textbook of Psychiatry ( 2 ). In WHO’s Guide to mental health in primary care , which Wessely has helped to develop, is ME / CFS wrongly classified under mental disorders, F48.0. Wrong classification has been debated in the British House several times. WHO were involved and confirmed that ME / CFS should continue to be classified under G93.3 and that no disease can be classified in more than one category. According to ICD-10 is to be post-viral fatigue syndrome specifically excluded before the diagnosis neurasthenia set. Secretary of State for the UK Department of Health, Lord Warner, had in the House of Lords regret their statements in support of Wessely misclassification.

Director of WHO’s Collaborating Centre at King’s College London, Professor Rachel Jenkins has had to bow and accept the WHO’s official position, namely that ME / CFS should be classified under G93.3. The book is stopped and will come in a revised edition. When a country has accepted WHO’s regulations, it is mandatory to follow ICDs classification.

Malt and employee classification of ME / CFS in Textbook of Psychiatry ( 2 ) is contrary to the WHO system. It is highly regrettable that new generations healthcare are taught in heresy by reading the chapter on psychosomatic disorders in this book. In my view, the discussion of ME / CFS is removed, the book withdrawn and come out in a revised edition.

A consensus panel of medical experts has developed new clinical criteria for ME / CFS ( 3 ) These criteria provide a more accurate description of reality.

You can read the full letter herehttp://tidsskriftet.no/article/1015463

 

Source: E. Stormorken. Heresies in textbook on psychiatry. Tidsskr Nor Laegeforen. 2004 May 6;124(9):1277; author reply 1277. [Article in Norwegian] http://tidsskriftet.no/article/1015463 (Full article)

 

Chronic fatigue and indicators of long-term employment disability in psychosomatic inpatients

Abstract:

The major goal of this study was to determine indictors of long-term disability for psychosomatic inpatients with chronic fatigue syndrome. To this end, a cross-sectional study was performed with a random sample of patients (n=1000, response rate: 83.9%) at a psychosomatic inpatient clinic. 51.1% of the patients (n=429) reported intensely persistent exhaustion that had no logical relation to actual exertion. 159 (37.1%) patients in this group were disabled from working and these comprised the main target group of this study.

Significantly more patients in the target group worked part time, were disabled for a disproportionately long period of time (50.9% of all were disabled for more than 6 months in the previous year), and felt stressed because of conflicts with their superiors and/or colleagues (in each case, P<0.01). While more frequent psychological comorbidity was not found, they reported physical complaints more often. It was not the patients fit for work who felt more burdened with chronic fatigue, but rather the employment-disabled, who were actually exposed to fewer demands.

These patients had, in comparison with those fit to work, a stronger fixation on somatic complaints, inadequate perception of physical and psychic sensations, difficulties getting along with other people and in coping with a regular job (in each case, P<0.01). Prospective examination of these indicators could help detect predictor variables for long-term disability in chronic fatigue. Such predictors could contribute to timely social-medical assessment and treatment.

 

Source: Tritt K, Nickel M, Mitterlehner F, Nickel C, Forthuber P, Leiberich P, Rother W, Loew T. Chronic fatigue and indicators of long-term employment disability in psychosomatic inpatients. Wien Klin Wochenschr. 2004 Mar 31;116(5-6):182-9. http://www.ncbi.nlm.nih.gov/pubmed/15088993

 

Impairment and coping in children and adolescents with chronic fatigue syndrome: a comparative study with other paediatric disorders

Abstract:

BACKGROUND: Functional impairment is a key feature of chronic fatigue syndrome (CFS) of childhood.

AIM: To compare impairment, illness attitudes and coping mechanisms in childhood CFS and in other paediatric disorders.

METHOD: Participants were 28 children and adolescents with CFS, 30 with juvenile idiopathic arthritis (JIA) and 27 with emotional disorders (ED). The measures used were interviews with children and parents, with detailed enquiry on impairment, including the Functional Disability Inventory (FDI), Illness Attitudes Scales (IAS), and Kidcope to measure coping styles in relation to common problems, illness and disability.

RESULTS: Children with CFS reported significantly more illness impairment, especially in school attendance, than those with JIA and ED. They had higher ‘worry about illness’ scores on the IAS. On the Kidcope they named school issues (work, expectations, attendance) as illness- or disability-related problems more than the other two groups. Fewer CFS participants reported using problem solving as a strategy to cope with illness and disability than with other problems in their lives. More in the CFS than in the JIA group used emotional regulation to cope with illness and disability. Fewer in the CFS than in the ED groups used social withdrawal to cope with illness and self-criticism for disability, but more used resignation to cope with disability.

CONCLUSION: Severe illness-related impairment, particularly through school non-attendance, and high levels of illness-related school concerns appear specific to CFS. CFS may also have characteristically high levels of generalised illness worry and particular styles of coping with illness and disability.

 

Source: Garralda ME, Rangel L. Impairment and coping in children and adolescents with chronic fatigue syndrome: a comparative study with other paediatric disorders. J Child Psychol Psychiatry. 2004 Mar;45(3):543-52. http://www.ncbi.nlm.nih.gov/pubmed/15055373