Diagnosis in chronic illness: disabling or enabling–the case of chronic fatigue syndrome

Abstract:

This paper examines doctors’ and patients’ views on the consequences of an increasingly common symptomatic diagnosis, chronic fatigue syndrome (CFS).

Two studies were conducted: the first comprised interviews with 20 general practitioners; the second was a longitudinal study, comprising three interviews over a period of 2 years with 50 people diagnosed with CFS. Contrasts were apparent between doctors’ practical and ethical concerns about articulating a diagnosis of CFS and patients’ experiences with and without such a diagnosis.

Seventy per cent of the doctors were reluctant to articulate a diagnosis of CFS. They felt constrained by the scientific uncertainty regarding its aetiology and by a concern that diagnosis might become a disabling self-fulfilling prophecy. Patients, by contrast, highlighted the enabling aspects of a singular coherent diagnosis and emphasized the negative effects of having no explanation for their problems.

Comment in: Diagnosis in chronic illness. [J R Soc Med. 1995]

 

Source: Woodward RV, Broom DH, Legge DG. Diagnosis in chronic illness: disabling or enabling–the case of chronic fatigue syndrome. J R Soc Med. 1995 Jun;88(6):325-9. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1295234/ (Full article)

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis

Comment on: General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-Although the precise pathoaetiology of myalgic encephalomyelitis remains the subject of debate, Shonagh Scott and colleagues are incorrect in asserting that “no evidence exists” of encephalitis. Buchwald et al carried out a large cohort study in which neurological symptoms, results of magnetic resonance imaging, and lymphocyte phenotyping suggested that the patients were experiencing “a chronic, immunologically mediated inflammatory process of the central nervous system.”2 More recently, Schwartz et al, who used single photon emission computed tomography, described abnormalities that were consistent with the hypothesis that “a chronic viral encephalitis” may be present.3 Furthermore, in the only postmortem study to have been published the polymerase chain reaction showed enteroviral sequences (compatible with coxsackie virus B3) in samples from the hypothalamus and brain stem,4 indicating that viral persistence within selective parts of the central nervous system may also play a part.

Given the uncertainties surrounding both the pathoaetiology and the diagnostic criteria for myalgic encephalomyelitis, it is not surprising to learn that self diagnosis produces difficulties in the doctor-patient relationship. The conclusions of and motives behind Scott and colleagues’ study must, however, be questioned in view of the fact that the fictitious patients had a list of vague symptoms that failed to satisfy diagnostic criteria for either a chronic fatigue syndrome (as defined by the International Chronic Fatigue Syndrome Study Group)5 or a postinfectious fatigue syndrome (as defined by current British criteria).6 Neither did the symptoms accord with those that patient support organisations would agree constitute a satisfactory diagnosis of myalgic encephalomyelitis.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549699/pdf/bmj00593-0058b.pdf

 

Source: Shepherd C. GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis. BMJ. 1995 May 20;310(6990):1330. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549699/

 

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented

Comment on: General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-Shonagh Scott and colleagues’ paper on general practitioners’ attitudes to self diagnosed myalgic encephalomyelitis illustrates, if nothing else, the continuing misrepresentation of this illness and those who suffer from it.’ Contrary to the authors’ claims, Action for ME has never encouraged self diagnosis, and nor have the other “active support organisations” in Britain. Moreover, we have never advocated that patients should make unreasonable demands on their general practitioners.

Despite what Scott and colleagues imply, it is not just patients who recognise the existence of myalgic encephalomyelitis but also the World Health Organisation (the disease appears in the International Classification of Diseases (10th revision)), several handbooks, and many doctors. Indeed, positive attitudes to fatigue syndromes such as myalgic encephalomyelitis have been noted in several studies in the past few years. For instance, Ho-Yen and McNamara surveyed 178 general practitioners in Scotland and found that 71% accepted the existence of the disorder.2 In New Zealand the figure was 90%.3

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549698/pdf/bmj00593-0058a.pdf

 

Source: Arber M. GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented. BMJ. 1995 May 20;310(6990):1330. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549698/

 

Chronic fatigue syndrome: a clinical and laboratory study with a well matched control group

Abstract:

OBJECTIVE: To investigate the relation between severity of complaints, laboratory data and psychological parameters in patients with chronic fatigue syndrome (CFS).

SUBJECTS: Eighty-eight patients with CFS and 77 healthy controls matched for age, sex and geographical area.

METHODS: Patients and controls visited our outpatient clinic for a detailed medical history, physical examination and psychological tests: Checklist Individual Strength (CIS). Beck Depression Inventory (BDI) and Sickness Impact Profile (SIP). Venous blood was drawn for a complete blood cell count, serum chemistry panel, C-reactive protein and serological tests on a panel of infectious agents.

RESULTS: All patients fulfilled the criteria for CFS as described by Sharpe et al. (J R Soc Med 1991; 84: 118-21), only 18 patients (20.5%) fulfilled the CDC criteria. The outcome of serum chemistry tests and haematological tests were within the normal range. No significant differences were found in the outcome of serological tests. Compared to controls, significant differences were found in the results on the CIS, the BDI, and the SIP. These results varied with the number of complaints (CDC criteria). When the number of complaints was included as the covariate in the analysis, there were no significant differences on fatigue severity, depression, and functional impairment between patients who fulfilled the CDC criteria and patients who did not.

CONCLUSION: It is concluded that the psychological parameters of fatigue severity, depression and functional impairment are related to the clinical severity of the illness. Because the extensive panel of laboratory tests applied in this study did not discriminate between patients and controls, it was not possible to investigate a possible relation between the outcomes of psychological and laboratory testing.

Comment in: Chronic fatigue syndrome: a clinical and laboratory study with a well-matched control group. [J Intern Med. 2004]

 

Source: Swanink CM, Vercoulen JH, Bleijenberg G, Fennis JF, Galama JM, van der Meer JW. Chronic fatigue syndrome: a clinical and laboratory study with a well matched control group. J Intern Med. 1995 May;237(5):499-506. http://www.ncbi.nlm.nih.gov/pubmed/7738491

 

General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis

Comment in:

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis. [BMJ. 1995]

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented. [BMJ. 1995]

 

Interest in the symptom of tiredness has increased with the suggestion of a syndrome of prolonged fatigue caused by infection. The syndrome is referred to as myalgic encephalomyelitis, even though no evidence exists that sufferers have encephalitis or myelitis. Active support organisations encourage self diagnosis 1 and advise how to approach a general practitioner who “doesn’t believe in ME.”2 Problems in doctor-patient relationships may be a factor in persistent disability in fatigue states.3 We therefore used a case vignette method to examine how self diagnosis of myalgic encephalomyelitis could influence general practitioners.4

You can read the full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2548881/pdf/bmj00581-0036.pdf

 

Source: Scott S, Deary I, Pelosi AJ. General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. BMJ. 1995 Feb 25;310(6978):508. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2548881/

 

Clinical laboratory test findings in patients with chronic fatigue syndrome

Abstract:

BACKGROUND: Results of readily available clinical laboratory tests in patients with chronic fatigue syndrome were compared with results in healthy control subjects.

METHODS: Cases consisted of all 579 patients who met either the Centers for Disease Control and Prevention, Atlanta, Ga, British, or Australian case definition for chronic fatigue syndrome. They were from chronic fatigue clinics in Boston, Mass, and Seattle, Wash. Control subjects consisted of 147 blood donors who denied chronic fatigue. Outcome measures were the results of 18 clinical laboratory tests.

RESULTS:Age- and sex-adjusted odds ratios of abnormal results, comparing cases with control subjects, were as follows: circulating immune complexes, 26.5 (95% confidence interval [CI] 3.4-206), atypical lymphocytosis, 11.4 (95% CI, 1.4-94); elevated immunoglobulin G, 8.5 (95% CI, 2.0-37); elevated alkaline phosphatase, 4.2 (95% CI, 1.6-11); elevated total cholesterol, 2.1 (95% CI, 1.2-3.4); and elevated lactic dehydrogenase, 0.30 (95% CI, 0.16-0.56). Also, antinuclear antibodies were detected in 15% of cases vs 0% in the control subjects. The results of these tests were generally comparable for the cases from Seattle and Boston. Although these tests served to discriminate the population of patients from healthy control subjects, at the individual level they were not as useful.

CONCLUSIONS: Patients with chronic fatigue syndrome who were located in two geographically distant areas had abnormalities in the results of several readily available clinical laboratory tests compared with healthy control subjects. The immunologic abnormalities are in accord with a growing body of evidence suggesting chronic, low-level activation of the immune system in chronic fatigue syndrome. While each of these laboratory findings supports the diagnosis of chronic fatigue syndrome, each lacks sufficient sensitivity to be a diagnostic test. Furthermore, the specificity of these findings relative to other organic and psychiatric conditions that can produce fatigue remains to be established.

Comment in: Clinical laboratory test findings in patients with chronic fatigue syndrome. [Arch Intern Med. 1995]

 

Source: Bates DW, Buchwald D, Lee J, Kith P, Doolittle T, Rutherford C, Churchill WH, Schur PH, Wener M, Wybenga D, et al. Clinical laboratory test findings in patients with chronic fatigue syndrome. Arch Intern Med. 1995 Jan 9;155(1):97-103. http://www.ncbi.nlm.nih.gov/pubmed/7632202

 

Use of dynamic tests of muscle function and histomorphometry of quadriceps muscle biopsies in the investigation of patients with chronic alcohol misuse and chronic fatigue syndrome

Abstract:

Ischaemic lactate/ammonia tests, serum carnosinase and creatine kinase assays and percutaneous needle muscle biopsies were performed on 10 patients with chronic fatigue syndrome (CFS), and 10 with chronic alcohol misuse complaining of muscular symptoms.

Basal serum lactate levels were significantly elevated in the alcohol misusers compared to the CFS patients, but all were within the reference range. Lactate profiles after ischaemic forearm exercise did not differ significantly for the two patient groups.

In one patient previously diagnosed as having CFS, myoadenylate deaminase deficiency was identified on the basis of a flat ammonia response to ischaemia and absent muscle adenosine monophosphate deaminase activity. In addition, two further patients in the CFS group were subsequently shown to have other disorders: one had polymyositis and one had myopathy with mild type II fibre atrophy of unknown cause.

Histomorphometric examination of muscle needle biopsy in the alcohol misusers showed features of chronic alcohol-induced skeletal myopathy in six patients and polymyositis in one patient. Type II fibre atrophy factors were significantly elevated in the alcohol group but were within the reference range in CFS patients.

Dynamic tests of muscle function and muscle histology are valuable tools in excluding alternative pathology in CFS, whereas muscle histomorphometry is of the greatest value in the diagnosis of chronic alcoholic myopathy.

 

Source: Wassif WS, Sherman D, Salisbury JR, Peters TJ. Use of dynamic tests of muscle function and histomorphometry of quadriceps muscle biopsies in the investigation of patients with chronic alcohol misuse and chronic fatigue syndrome. Ann Clin Biochem. 1994 Sep;31 ( Pt 5):462-8. http://www.ncbi.nlm.nih.gov/pubmed/7832572

 

Chronic fatigue syndrome: a diagnostic challenge for the laboratory

Abstract:

OBJECTIVE: To review the literature and current research about the causes of chronic fatigue syndrome (CFS).

DATA SOURCES: Recent research articles about CFS and data gathered by the author.

STUDY SELECTION: Performed by the author.

DATA EXTRACTION: Performed by the author.

DATA SYNTHESIS: Chronic fatigue syndrome (CFS) is a disease of pain, excessive fatigue after minor exertion, cognitive difficulties, and other symptoms-all occurring in cycles. While its etiology is unclear, CFS is associated with abnormal results of immune system tests. There is no specific marker for the illness. Treatment is symptomatic, and the long-term outlook for recovery is good.

CONCLUSION: A rational, symptomatic approach to treating CFS patients can be made using the model developed at the author’s institution. Research into the causes of CFS must continue.

Source: Lanham RJ. Chronic fatigue syndrome: a diagnostic challenge for the laboratory. Clin Lab Sci. 1994 Sep-Oct;7(5):279-82. http://www.ncbi.nlm.nih.gov/pubmed/10150382

Chronic fatigue syndrome and myalgic encephalomyelitis

Comment on:

Chronic fatigue syndrome. Distinguish between syndromes… [BMJ. 1994]

Chronic fatigue syndrome. Role of psychological factors overemphasised. [BMJ. 1994]

 

Editor,-Our recent editorial on the chronic fatigue syndrome and myalgic encephalomyelitis prompted considerable correspondence,’ which raised issues of case definition, clinical management, and attitudes towards people with psychiatric illnesses. Sadly, many of our critics show that the editor of the BMJ is wrong to state in the “editor’s choice” in the issue of 14 May that “only the naivest medical students think that diseases have some independent, objective reality.” Medical students show greater intellectual sophistication in tackling the classification of ill defined illnesses than many patients and doctors-and particularly medical practitioners with self diagnosed myalgic encephalomyelitis.

Case definition-Ellen M Goudsmit’ and Nick Anderson’ assert that research criteria for the chronic fatigue syndrome fail to distinguish myalgic encephalomyelitis and exaggerate psychiatric associations. The best replicated research finding, however, is that patients suffer substantial emotional morbidity, whether the chronic fatigue syndrome is defined by British or, as patient groups prefer, Australian or American criteria. All three sets of criteria can be used to identify cases on a continuum of fatigue, which includes myalgic encephalomyelitis. We did not cite DO Ho-Yen’s prevalence study as it used an idiosyncratic definition of cases of the ‘chronic fatigue syndrome and surveyed doctors’ diagnoses rather than patients.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540769/pdf/bmj00450-0067b.pdf

 

Source: Lawrie SM, Pelosi AJ. Chronic fatigue syndrome and myalgic encephalomyelitis. BMJ. 1994 Jul 23;309(6949):275. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540769/

 

Chronic fatigue syndrome and psychiatric diseases

Abstract:

The chronic fatigue syndrome consists of a combination of non-specific symptoms. Some believe that the CFS is subcategory of major depression, because the symptoms are similar to those of major depression. We believe that the CFS is quite different from major depression or neurotic depression, since the CFS has no lack of initiative and effort, no inhibition which is seen in endogenous depression, and sharp fluctuations in general fatigue, anxiety, and various persisting somatic symptoms, such as, malaise and mild fever. CFS seems to be similar to the neurasthenia. It is harmful, at least, in aetiology and treatment, to neglect the diagnosis of the CFS.

 

Source: Matsuno T, Hikita K, Matsuo T. Chronic fatigue syndrome and psychiatric diseases. Nihon Rinsho. 1994 May;52(5):1339-44. [Article in Japanese] http://www.ncbi.nlm.nih.gov/pubmed/8007411