The most popular terms for medically unexplained symptoms: the views of CFS patients

Abstract:

OBJECTIVE: Medically unexplained symptoms/syndromes are common, highly distressing and are often associated with profound disability. One of the controversies surrounding this area relates to which umbrella term should be used to group such symptoms. The purpose of this research was to establish the preferences of patients with chronic fatigue syndrome (CFS) for an umbrella term for medically unexplained symptoms.

METHODS: A cross-sectional mixed methods survey design was used. Participants were asked to indicate their three most preferred terms out of a list of commonly used terms and to provide any extra comments. Frequency analysis was employed to look at the preferences of terms for each rank. Comments were analysed using principles of inductive thematic analysis.

RESULTS: Eighty-seven patients with CFS completed a self-report survey. The term “Persistent Physical Symptoms” was the most popular first choice term chosen by 20.7% of patients. Terms containing the word “physical” were consistently more likely to be chosen. Three main themes emerged from the thematic analysis: 1) Physical nature of the illness, 2) Stigma, and 3) Evaluation of the terms, giving a more in-depth understanding of the findings.

CONCLUSION: According to CFS patients, an umbrella term has to reflect the physical experience of MUS.

Copyright © 2015 Elsevier Inc. All rights reserved.

 

Source: Picariello F, Ali S, Moss-Morris R, Chalder T. The most popular terms for medically unexplained symptoms: the views of CFS patients. J Psychosom Res. 2015 May;78(5):420-6. doi: 10.1016/j.jpsychores.2015.02.013. Epub 2015 Feb 27. https://www.ncbi.nlm.nih.gov/pubmed/25791667

 

How do patients interpret terms for medically unexplained symptoms?

Abstract:

OBJECTIVE: To investigate how primary care patients interpret the existing terminology used to describe medically unexplained symptoms; to contribute to the current academic discussion on unequivocal terminology.

DESIGN: Descriptive cohort study.

METHODS: We approached patients in the waiting rooms of two general medical practices in the city of Groningen and in the province of Drenthe. Based on a fictitious case, the patients were asked to assign connotations to a number of possible diagnoses for medically unexplained tiredness. The patients could choose from seven predetermined connotations. Among the diagnoses for medically unexplained tiredness were ‘functional fatigue’, ‘chronic fatigue syndrome’, ‘psychosomatic tiredness’, and ‘medically unexplained tiredness’. From the seven connotations, we labeled three connotations as being negative. When patients gave at least one negative connotation to a possible diagnosis, the diagnosis was labeled as ‘offensive’.

RESULTS: A total of 184 patients participated in the study. From the alternative diagnoses for medically unexplained tiredness, ‘psychosomatic tiredness’ had the most negative connotations: at least one negative connotation for 65 (35%) patients. ‘Chronic fatigue syndrome’ and ‘functional fatigue’ had the fewest negative connotations: at least one negative connotation for respectively 17 (9%) and 24 (13%) patients.

CONCLUSION: The terms ‘chronic fatigue syndrome’ and ‘functional fatigue’ were less offensive. Our results could imply that terms for medically unexplained tiredness that refer less to a psychological basis are most acceptable for the patient.

 

Source: Kingma EM, Moddejonge R, Rosmalen J. How do patients interpret terms for medically unexplained symptoms? Ned Tijdschr Geneeskd. 2012;156(37):A4541. [Article in Dutch] https://www.ncbi.nlm.nih.gov/pubmed/22971428

 

Chronic fatigue syndrome: an overview

Medically unexplained symptoms (MUS) – those lacking identifiable underlying physical disease – are common in all levels of the health care system, and can be associated with severe disability and distress to patients and high cost to health services. Common MUS include pain (including back, chest, abdominal pain, and headache), fatigue, dizziness and ENT (Ear, Nose and Throat) symptoms. Similarly, functional somatic syndromes refer to groups of symptoms lacking disease-specific, demonstrable abnormalities of structure, and are usually defined by specialty or organ system.1 They include irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivity, chronic pelvic pain, temporomandibular joint dysfunction and more recently Gulf War syndrome. These conditions overlap in their symptoms, aetiology and treatment; prompting some to point out that the similarities outweigh differences between them and that there is utility in considering them collectively rather than separately.2

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Source: Cho HJ, Wessely S. Chronic fatigue syndrome: an overview. Rev Bras Psiquiatr. 2005 Sep;27(3):174-5. Epub 2005 Oct 4. http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1516-44462005000300003&lng=en&nrm=iso&tlng=en (Full article)

 

Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US

Abstract:

We examine Gulf War illnesses–which include the fatigue, joint pain, dermatitis, headaches, memory loss, blurred vision, diarrhea, and other symptoms reported by Gulf War veterans–in relation to other medically unexplained physical symptoms such as multiple chemical sensitivity,chronic fatigue syndrome, and fibromyalgia. Our intent is to examine the diagnosis negotiations involved in these mysterious diseases, by showing the different forms of legitimacy involved in such interactions.

Factors involved in diagnostic legitimacy are: diagnostic legitimacy in the medical community, lay acceptance of the diagnosis, uncertainty in looking for causes, and social mobilization. We conclude by noting that research may not be able to find any cause for these diseases/conditions; hence, it may be necessary to embrace medical uncertainty, and also to accept patient experience in order to facilitate diagnosis, treatment, and recovery process.

Such a change can alter patients’ expectations and taken-for-granted assumptions about medicine, and perhaps in turn reduce the frequency with which dissatisfied individuals form illness groups that mobilize to challenge what they see as an unresponsive medical system.

 

Source: Zavestoski S, Brown P, McCormick S, Mayer B, D’Ottavi M, Lucove JC. Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US. Soc Sci Med. 2004 Jan;58(1):161-75. http://www.ncbi.nlm.nih.gov/pubmed/14572929

 

Medically unexplained physical symptoms, anxiety, and depression: a meta-analytic review

Abstract:

OBJECTIVE: Our objective was to review and compare, with meta-analytic methods, observational studies on the association of medically unexplained physical symptoms, anxiety, and depression with special emphasis on healthy and organically ill control groups and on different types of symptoms, measures, and illness behavior.

METHODS: A search of MEDLINE and PsycLIT/PsycINFO for abstracts from 1980 to April 2001 was performed; principal investigators in the field were contacted and article reference lists were used to retrieve additional relevant articles. Two hundred forty-four studies were included on the basis of consensus ratings if they fulfilled seven of eight inclusion criteria pertaining to diagnostic accuracy and statistical appropriateness. Five hundred twenty-two studies were deferred or excluded. We focused specifically on the four functional somatic syndromes for which there were sufficient numbers for meta-analytic integration: irritable bowel syndrome (IBS), nonulcer dyspepsia (NUD), fibromyalgia (FM), and chronic fatigue syndrome (CFS). Data were extracted independently by two authors according to a prespecified coding manual with up to 70 parameters per study.

RESULTS: Effect sizes for the association of the four functional somatic syndromes with depression and anxiety were of moderate magnitude but were highly significant statistically when compared with healthy persons and controls with medical disorders of known organic pathology. Moreover, this association was significant whether depression was measured with or without somatic items. Chronic fatigue syndrome is characterized by higher scores of depression, fibromyalgia by lower scores of anxiety than irritable bowel syndrome. Consulting behavior and severity of somatization is related to higher levels of anxiety and depression.

CONCLUSIONS: Meta-analytic integration confirms that the four functional somatic syndromes (IBS, NUD, FM, CFS) are related to (but not fully dependent on) depression and anxiety. At present, there is only limited meta-analytic evidence for the same sort of association for medically unexplained physical symptoms in general. In view of the relative independence from depression and anxiety, classification and treatment of these symptoms and syndromes as “common mental disorders” does not seem fully appropriate.

 

Source: Henningsen P, Zimmermann T, Sattel H. Medically unexplained physical symptoms, anxiety, and depression: a meta-analytic review. Psychosom Med. 2003 Jul-Aug;65(4):528-33. http://www.ncbi.nlm.nih.gov/pubmed/12883101

 

The role of environmental factors in medically unexplained symptoms and related syndromes: conference summary and recommendations

Abstract:

This monograph of peer-reviewed articles is based on presentations at the conference “Environmental Factors in Medically Unexplained Physical Symptoms and Related Syndromes” held 10-12 January 2001 in Piscataway, New Jersey, USA. The purpose of the conference was to determine research priorities for elucidating the role of environmental factors in medically unexplained symptoms and symptom syndromes. These include conditions such as chronic fatigue syndrome, multiple chemical sensitivities, sick building syndrome, Gulf War illness, and the like. Approximately 1 1/2 days were devoted to plenary talks and 1 day was devoted to break-out sessions to discuss epidemiologic, psychosocial, and experimental research. Recommendations were made for a series of epidemiologic, psychosocial, and experimental research approaches, with acknowledgment that nosology issues are clearly fundamental to advancing understanding of these conditions.

 

Source: Kipen HM, Fiedler N. The role of environmental factors in medically unexplained symptoms and related syndromes: conference summary and recommendations. Environ Health Perspect. 2002 Aug;110 Suppl 4:591-5. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1241210/ (Full article)

 

A review of the evidence for overlap among unexplained clinical conditions

Abstract:

PURPOSE: Unexplained clinical conditions share features, including symptoms (fatigue, pain), disability out of proportion to physical examination findings, inconsistent demonstration of laboratory abnormalities, and an association with “stress” and psychosocial factors. This literature review examines the nature and extent of the overlap among these unexplained clinical conditions and the limitations of previous research.

DATA SOURCES: English-language articles were identified by a search of the MEDLINE database from 1966 to January 2001 by using individual syndromes and their hallmark symptoms as search terms.

STUDY SELECTION: Studies that assessed patients with at least one unexplained clinical condition and that included information on symptoms, overlap with other unexplained clinical conditions, or physiologic markers. Conditions examined were the chronic fatigue syndrome, fibromyalgia, the irritable bowel syndrome, multiple chemical sensitivity, temporomandibular disorder, tension headache, interstitial cystitis, and the postconcussion syndrome.

DATA EXTRACTION: Information on authorship, patient and control groups, eligibility criteria, case definitions, study methods, and major findings.

DATA SYNTHESIS: Many similarities were apparent in case definition and symptoms, and the proportion of patients with one unexplained clinical condition meeting criteria for a second unexplained condition was striking. Tender points on physical examination and decreased pain threshold and tolerance were the most frequent and consistent objective findings. A major shortcoming of all proposed explanatory models is their inability to account for the occurrence of unexplained clinical conditions in many affected patients.

CONCLUSIONS: Overlap between unexplained clinical conditions is substantial. Most studies are limited by methodologic problems, such as case definition and the selection and recruitment of case-patients and controls.

 

Source: Aaron LA, Buchwald D. A review of the evidence for overlap among unexplained clinical conditions. Ann Intern Med. 2001 May 1;134(9 Pt 2):868-81. http://www.ncbi.nlm.nih.gov/pubmed/11346323

 

The role of depression in pain, psychophysiological syndromes and medically unexplained symptoms associated with chronic fatigue syndrome

Abstract:

BACKGROUND: The association between depression and pain, function, medically unexplained symptoms and psychophysiological syndromes such as irritable bowel syndrome has not been explored before in chronic fatigue syndrome.

METHODS: Cross-sectional controlled study of the current prevalence of psychophysiological syndromes, pain, function and lifetime prevalence of medically unexplained symptoms in 77 out-patients with chronic fatigue syndrome (CFS) without DSM-III-R depression, 42 CFS out-patients with DSM-III-R depression and 26 out-patient with primary DSM-III-R depression.

RESULTS: Both CFS groups differed significantly from the primary depression group but not each other in the prevalence of tension headaches (P < 0.001), reporting of widespread bodily pain (P < 0.001) and the number of lifetime medically unexplained symptoms (P < 0.001). The three groups did not significantly differ in the prevalence of irritable bowel syndrome or fibromyalgia. CFS patients with depression were more impaired in social function than other CFS patients.

CONCLUSION: Depression is not associated with the reporting of pain, psychophysiological syndromes and medically unexplained symptoms in CFS patients. Depression is associated with decreased social function in CFS patients.

LIMITATIONS: Study depended on recall of symptoms, not confirmed by medical records and current investigations. Patients with depression were taking antidepressants.

CLINICAL RELEVANCE: Treating depression in chronic fatigue syndrome is unlikely to diminish reporting of pain and medically unexplained symptoms but may improve social function.

 

Source: Morriss RK, Ahmed M, Wearden AJ, Mullis R, Strickland P, Appleby L, Campbell IT, Pearson D. The role of depression in pain, psychophysiological syndromes and medically unexplained symptoms associated with chronic fatigue syndrome. J Affect Disord. 1999 Oct;55(2-3):143-8. http://www.ncbi.nlm.nih.gov/pubmed/10628883

 

Chronic fatigue syndrome criteria. A critique of the requirement for multiple physical complaints

Abstract:

OBJECTIVE: The purpose of this study was to test the hypothesis that the patients with chronic fatigue who have the highest number of medically unexplained physical symptoms over their lifetime would also have the highest prevalence of current and lifetime affective and anxiety disorders, lifetime affective symptoms, and the most functional disability. A further goal was to use this information to modify the current case definition to better identify a subgroup of patients with chronic fatigue syndrome who are less likely to have psychiatric illness.

DESIGN: Two hundred eighty-five consecutive patients with chronic fatigue were interviewed with the National Institute of Mental Health Diagnostic Interview Schedule and completed four self-rating questionnaires measuring psychologic distress, functional disability, and the tendency to amplify symptoms. Based on previously published data, patients were divided into four groups with a progressively higher number of lifetime medically unexplained physical symptoms. The prevalence of current and lifetime psychiatric disorders, lifetime psychologic symptoms, and extent of functional impairment was then compared in these four groups of patients.

MAIN RESULTS: The prevalence of current and lifetime psychiatric diagnosis and lifetime depressive symptoms increased linearly with the number of lifetime physical symptoms that the patient experienced. The extent of impairment in activities of daily living and the tendency to amplify symptoms also increased linearly with the number of medically unexplained physical symptoms.

CONCLUSION: The patients with the highest numbers of medically unexplained physical symptoms had extraordinarily high rates of current and lifetime psychiatric disorders. These data suggest that the current case definition for chronic fatigue syndrome inadvertently selects for patients with the highest prevalence of lifetime psychiatric diagnoses. A recommendation based on these results is to modify the case criteria for chronic fatigue syndrome to include patients with fatigue and few physical symptoms and to identify and consider excluding patients with high numbers of physical complaints.

Comment in: Defining the chronic fatigue syndrome. [Arch Intern Med. 1992]

 

Source: Katon W, Russo J. Chronic fatigue syndrome criteria. A critique of the requirement for multiple physical complaints. Arch Intern Med. 1992 Aug;152(8):1604-9. http://www.ncbi.nlm.nih.gov/pubmed/1497394