Category: Diagnosis

Validating a measure of myalgic encephalomyelitis/chronic fatigue syndrome symptomatology

Abstract:

OBJECTIVES: The present study sought to validate a comprehensive self-report measure of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptomatology to aid in clinical and research assessment.

METHOD: Exploratory factor analysis (EFA) was used to establish the underlying factor structure of the DePaul Symptom Questionnaire (DSQ) (Jason, Evans, et al., 2010) using a well-characterized sample of individuals (92.6% met the Fukuda et al. criteria (1994) and/or the Clinical Canadian Criteria (Carruthers et al., 2003)), and this structure was then tested on a less stringently recruited sample of individuals utilizing a confirmatory factor analysis (CFA). Convergent and discriminant validity of the DSQ were also examined utilizing alternative measures of symptomatology and functioning.

RESULTS: A 3-factor solution was found using EFA (Neuroendocrine, Autonomic & Immune Dysfunction; Neurological/Cognitive Dysfunction; Post-Exertional Malaise) and the fit of this factor structure was adequate for the second sample.

DISCUSSION: The DSQ is a valid measure of ME/CFS symptomatology. The emergent factors were consistent with previous literature on symptom clusters, and convergent and discriminant validity were established.

 

Source: Brown AA, Jason LA. Validating a measure of myalgic encephalomyelitis/chronic fatigue syndrome symptomatology. Fatigue. 2014;2(3):132-152. Epub 2014 Jul 23. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4871625/ (Full article)

 

Undiagnosed and comorbid disorders in patients with presumed chronic fatigue syndrome

Abstract:

OBJECTIVE: To assess undiagnosed and comorbid disorders in patients referred to a tertiary care center with a presumed diagnosis of chronic fatigue syndrome (CFS).

METHODS: Patients referred for chronic unexplained fatigue entered an integrated diagnostic pathway, including internal medicine assessment, psychodiagnostic screening, physiotherapeutic assessment and polysomnography+multiple sleep latency testing. Final diagnosis resulted from a multidisciplinary team discussion. Fukuda criteria were used for the diagnosis of CFS, DSM-IV-TR criteria for psychiatric disorders, ICSD-2 criteria for sleep disorders.

RESULTS: Out of 377 patients referred, 279 (74.0%) were included in the study [84.9% female; mean age 38.8years (SD 10.3)]. A diagnosis of unequivocal CFS was made in 23.3%. In 21.1%, CFS was associated with a sleep disorder and/or psychiatric disorder, not invalidating the diagnosis of CFS. A predominant sleep disorder was found in 9.7%, 19.0% had a psychiatric disorder and 20.8% a combination of both. Only 2.2% was diagnosed with a classical internal disease. In the total sample, a sleep disorder was found in 49.8%, especially obstructive sleep apnea syndrome, followed by psychophysiologic insomnia and periodic limb movement disorder. A psychiatric disorder was diagnosed in 45.2%; mostly mood and anxiety disorder.

CONCLUSIONS: A multidisciplinary approach to presumed CFS yields unequivocal CFS in only a minority of patients, and reveals a broad spectrum of exclusionary or comorbid conditions within the domains of sleep medicine and psychiatry. These findings favor a systematic diagnostic approach to CFS, suitable to identify a wide range of diagnostic categories that may be subject to dedicated care.

© 2013. Published by Elsevier Inc. All rights reserved.

 

Source: Mariman A, Delesie L, Tobback E, Hanoulle I, Sermijn E, Vermeir P, Pevernagie D, Vogelaers D. Undiagnosed and comorbid disorders in patients with presumed chronic fatigue syndrome. J Psychosom Res. 2013 Nov;75(5):491-6. doi: 10.1016/j.jpsychores.2013.07.010. Epub 2013 Aug 20. https://www.ncbi.nlm.nih.gov/pubmed/24182640

 

A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) has no diagnostic clinical signs or biomarkers, so diagnosis requires ruling out conditions with similar signs and symptoms. We conducted a pilot registry of unexplained fatiguing illnesses and CFS to determine the feasibility of establishing and operating a registry and implementing an education outreach initiative. The pilot registry was conducted in Bibb County, Georgia. Patient referrals were obtained from healthcare providers who were identified by using various education outreach initiatives. These referrals were later supplemented with self-referrals by members of a local CFS support group. All patients meeting referral criteria were invited to participate in a screening interview to determine eligibility. If patients met registry criteria, they were invited to a one-day clinic for physical and laboratory evaluations. We classified patients based on the 1994 case definition.

RESULTS: We registered 827 healthcare providers. Forty-two providers referred 88 patients, and 58 patients (66%) completed clinical evaluation. Of the 188 CFS support group members, 53 were self-referred and 46 (87%) completed the clinical evaluation. Of the 104 participants completing evaluation, 36% (n = 37) met the criteria for CFS, 17% (n = 18) had insufficient fatigue or symptoms (ISF), and 47% (n = 49) were found to have exclusionary medical or psychiatric illnesses. Classification varied significantly by type of referral but not by previous history of CFS diagnosis. Healthcare providers referred more patients who were classified as CFS as compared to support group referrals in which more exclusionary conditions were identified. Family practice and internal medicine specialties made the most referrals and had the highest number of CFS cases. We conducted three CME events, held three “Meet and Greet” sessions, visited four large clinical health practices and health departments, mailed five registry newsletters, and conducted in-person office visits as part of education outreach, which contributed to patient referrals.

CONCLUSIONS: Referrals from healthcare providers and self-referrals from the patient support group were important to registry enrollment. The number of potentially treatable conditions that were identified highlights the need for continued medical management in this population, as well as the limitations of registries formed without clinical examination. Education initiatives were successful in part because of partnerships with local organizations.

 

Source: Brimmer DJ, Maloney E, Devlin R, Jones JF, Boneva R, Nagler C, LeRoy L, Royal S, Tian H, Lin JM, Kasten J, Unger ER. A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome. BMC Res Notes. 2013 Aug 2;6:309. doi: 10.1186/1756-0500-6-309. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3750716/ (Full article)

 

Clinical typology of chronic fatigue syndrome: classificatory hypothesis

Note: Full article also available as PDF download.

Primary (or pure) chronic fatigue syndrome (pCFS) is a complex and severe chronic and disabling disease of unknown causes, excluding secondary chronic fatigue syndrome (sCFS) related to some other medical condition. It is characterized by intense fatigue in addition to cognitive, autonomic, neuroendocrine, immunoallergic and musculoskeletal symptoms, which are of recent appearance and that cannot be explained by other clinical reasons, lasting for at least 6 months, is non-remitting significantly with rest and which worsens with physical or mental activity, with very slow recovery and a reduction of >50% of activities of daily living previously performed by the patient.1–4 It is diagnosed according to the 1994 Fukuda criteria,1 the Canadian consensus document published in 20032 or, more recently, the international consensus criteria of 2011; with the name of myalgic encephalomyelitis that offers a review on its physiopathology, symptoms and treatment.3 Prevalence is estimated to be between 0.5% and 2.5% of the general population.1–3,5 In spite of it being recognized as a disease by the WHO since 1989, and classified with the code G93.3 in the ICD-10,5,6 and that evidence accumulated from different fields during the past 2 decades, it is possible that pCFS is still largely unknown by most health professionals.

You can read the rest of this article here: http://www.reumatologiaclinica.org/en/clinical-typology-chronic-fatigue-syndrome/articulo/S2173574313001329/ 

Comment in

 

Source: Qanneta R, Fontova R, Poveda MJ, Castro S. Clinical typology of chronic fatigue syndrome: classificatory hypothesis. Reumatol Clin. 2014 Mar-Apr;10(2):132-3. doi: 10.1016/j.reuma.2013.04.004. Epub 2013 Jul 9.[Article in English, Spanish] http://www.reumatologiaclinica.org/es/linkresolver/tipologia-clinica-del-sindrome-fatiga/S1699258X13000971/ (Full article)

 

Diagnosis and management of chronic fatigue syndrome/myalgic encephalitis in black and minority ethnic people: a qualitative study

Abstract:

AIM: This study aims to explore the possible reasons for the lower levels of diagnosis of chronic fatigue syndrome/myalgic encephalitis (CFS/ME) in the black and minority ethnic (BME) population, and the implications for management.

BACKGROUND: Population studies suggest CFS/ME is more common in people from BME communities compared with the White British population. However, the diagnosis is made less frequently in BME groups.

METHODS: Semi-structured qualitative interviews were conducted with 35 key stakeholders in NW England. Interviews were analysed using open explorative thematic coding.

FINDINGS: There are barriers at every stage to the diagnosis and management of CFS/ME in people from BME groups. This begins with a lack of awareness of CFS/ME among BME respondents. Religious beliefs and the expectation of roles in the family and community mean that some people in BME groups may choose to manage their symptoms outside primary care using alternative therapies, prayer or spiritual healing. When accessing primary care, all participants recognised the possible influence of language barriers in reducing the likelihood of a diagnosis of CFS/ME. Stereotypical beliefs, including labels such as ‘lazy’ or ‘work shy’ were also believed to act as a barrier to diagnosis. Patients highlighted the importance of an on-going relationship with the general practitioner (GP), but perceived a high turnover of GPs in inner city practices, which undermined the holistic approach necessary to achieve a diagnosis.

CONCLUSION: Training is required for health professionals to challenge inaccurate assumptions about CFS/ME in BME groups. The focus on the individual in UK primary care may not be appropriate for this group due to the role played by the family and community in how symptoms can be presented and managed. Culturally sensitive, educational resources for patients are also needed to explain symptoms and legitimise consultation.

 

Source: Bayliss K, Riste L, Fisher L, Wearden A, Peters S, Lovell K, Chew-Graham C. Diagnosis and management of chronic fatigue syndrome/myalgic encephalitis in black and minority ethnic people: a qualitative study. Prim Health Care Res Dev. 2014 Apr;15(2):143-55. doi: 10.1017/S1463423613000145. Epub 2013 May 23. https://www.ncbi.nlm.nih.gov/pubmed/23702254

 

Patterns of abnormal visual attention in myalgic encephalomyelitis

Abstract:

PURPOSE: To experimentally assess visual attention difficulties commonly reported by those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

METHODS: Twenty-nine ME/CFS patients and 29 controls took part in the study. Performance was assessed using the Useful Field of View (UFOV), a spatial cueing task and visual search.

RESULTS: Patients and controls performed similarly on the processing speed subtest of the UFOV. However, patients exhibited marginally worse performance compared with controls on the divided attention subtest and significantly worse performance on the selective attention subtest. In the spatial cueing task, they were slower than controls to respond to the presence of the target, particularly when cues were invalid. They were also impaired, relative to controls, on visual search tasks.

CONCLUSIONS: We have provided experimental evidence for ME/CFS-related difficulties in directing visual attention. These findings support the subjective reports of those with ME/CFS and could represent a potential means to improve diagnosis.

 

Source: Hutchinson CV, Badham SP. Patterns of abnormal visual attention in myalgic encephalomyelitis. Optom Vis Sci. 2013 Jun;90(6):607-14. doi: 10.1097/OPX.0b013e318294c232. https://www.ncbi.nlm.nih.gov/pubmed/23689679

 

Case definitions and diagnostic criteria for Myalgic Encephalomyelitis and Chronic fatigue Syndrome: from clinical-consensus to evidence-based case definitions

Abstract:

The symptom spectrum of Myalgic Encephalomyelitis (ME) was first detailed in 1959 and later operationalised into a diagnostic protocol (Melvin Ramsey). In 1988 the Holmes case definition coined the term chronic fatigue syndrome (CFS). Fukuda’s Centers for Disease Control and Prevention criteria are very heterogeneous and comprise patients with milder symptoms than the Holmes case definition. The CDC Empirical Criteria for CFS lack sensitivity and/or specificity. Other CFS definitions, e.g. the Oxford criteria, delineate people with idiopathic fatigue. Some authors make the clinical CFS diagnosis when slightly increased self-rated fatigue scores are present. In 2011, Carruthers’ International Consensus Criteria attempted to restore the focus on selecting people who suffer from ME.

Cognitive bias in criteria construction, patient selection, data collection and interpretation has led to the current state of epistemological chaos with ME, CFS, CFS/ME and ME/CFS, and CF being used interchangeably. Moreover, none of the above mentioned classifications meet statistically based criteria for validation. Diagnostic criteria should be based on statistical methods rather than consensus declarations. Ongoing discussions about which case definition to employ miss the point that the criteria did not pass appropriate external validation.

In 2012, Maes et al. performed pattern recognition methods and concluded that CFS patients (according to Fukuda’s criteria) should be divided into those with CFS or ME, on the basis that people with ME display a worsening of their illness following increases in physical or cognitive activity. Both ME and CFS are complex disorders that share neuro-immune disturbances, which are more severe in ME than in CFS. This paper expands on that strategy and details a range of objective tests, which confirm that a person with ME or CFS has a neuro-immune disease.

By means of pattern recognition methods future research should refine the Maes’ case definitions for ME and CFS by including well-scaled symptoms, staging characteristics and neuro-immune biomarkers, including immune-inflammatory assays, bioenergetic markers and brain imaging.

 

Source: Morris G, Maes M. Case definitions and diagnostic criteria for Myalgic Encephalomyelitis and Chronic fatigue Syndrome: from clinical-consensus to evidence-based case definitions. Neuro Endocrinol Lett. 2013;34(3):185-99. https://www.ncbi.nlm.nih.gov/pubmed/23685416

 

Comment:

Ellen M Goudsmit

2014 Mar 01 2:10 p.m.
Dr. Melvin Ramsay began writing about the illness now known as ME after the outbreak in north London in 1955. I looked in his book (1988) for a paper written by him in 1959 and found none. The best known article from 1959 was written by the late Dr. Acheson, who gave ME its name in a leader in the Lancet (1956). Dr Ramsay offered a diagnostic protocol but not until the 1980s.

I agree with Morris and Maes that the core symptom of ME is an exacerbation of symptoms following minimal exertion (supported by Paul et al who referred to CFS but actually selected patients with ME, pers. comm.). It should also be noted that none of the existing criteria for ME and CFS have been found to have the required specificity and sensitivity. And that includes the 2011 version.
The abstract indicates a lack of attention to detail. This undermines the understanding of the issues and shows a lack of respect, not only for the researchers but also for the patients, 99% of whom would know how to spell the name of arguably one of the most knowledgeable experts in this field. This failure to check for accuracy is a major cause for confusion in the literature on ME and CFS. And what happened to peer review? Any peer would have noticed the problem with the first sentence.
People really interested in ME and CFS may like to purchase an excellent publication by Shepherd and Chaudhuri summarising the knowledge to date. It’s available from the ME Association in the UK. An authoritative and accurate review (2013).
Leading article. A new clinical entity? Lancet, 1956, 1, 789-790.
Paul, L et al. Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome. European Journal of Neurology, 1999, 6, 63-69.
Ramsay, AM. Myalgic encephalomyelitis and postviral fatigue states. Second Ed. Gower Medical Publ. 1988. now available from the MEA Association, UK.

 

A narrative review on the similarities and dissimilarities between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and sickness behavior

Abstract:

It is of importance whether myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a variant of sickness behavior. The latter is induced by acute infections/injury being principally mediated through proinflammatory cytokines. Sickness is a beneficial behavioral response that serves to enhance recovery, conserves energy and plays a role in the resolution of inflammation.

There are behavioral/symptomatic similarities (for example, fatigue, malaise, hyperalgesia) and dissimilarities (gastrointestinal symptoms, anorexia and weight loss) between sickness and ME/CFS. While sickness is an adaptive response induced by proinflammatory cytokines, ME/CFS is a chronic, disabling disorder, where the pathophysiology is related to activation of immunoinflammatory and oxidative pathways and autoimmune responses.

While sickness behavior is a state of energy conservation, which plays a role in combating pathogens, ME/CFS is a chronic disease underpinned by a state of energy depletion. While sickness is an acute response to infection/injury, the trigger factors in ME/CFS are less well defined and encompass acute and chronic infections, as well as inflammatory or autoimmune diseases. It is concluded that sickness behavior and ME/CFS are two different conditions.

 

Source: Morris G, Anderson G, Galecki P, Berk M, Maes M. A narrative review on the similarities and dissimilarities between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and sickness behavior. BMC Med. 2013 Mar 8;11:64. doi: 10.1186/1741-7015-11-64. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3751187/ (Full article)

 

Diagnosis of myalgic encephalomyelitis: where are we now?

Abstract:

INTRODUCTION: The World Health Organization has classified myalgic encephalomyelitis (ME) as a neurological disease since 1969 considering chronic fatigue syndrome (CFS) as a synonym used interchangeably for ME since 1969. ME and CFS are considered to be neuro-immune disorders, characterized by specific symptom profiles and a neuro-immune pathophysiology. However, there is controversy as to which criteria should be used to classify patients with “chronic fatigue syndrome.”

AREAS COVERED: The Centers for Disease Control and Prevention (CDC) criteria consider chronic fatigue (CF) to be distinctive for CFS, whereas the International Consensus Criteria (ICC) stresses the presence of post-exertion malaise (PEM) as the hallmark feature of ME. These case definitions have not been subjected to rigorous external validation methods, for example, pattern recognition analyses, instead being based on clinical insights and consensus.

EXPERT OPINION: Pattern recognition methods showed the existence of three qualitatively different categories: (a) CF, where CF evident, but not satisfying full CDC syndrome criteria. (b) CFS, satisfying CDC criteria but without PEM. (c) ME, where PEM is evident in CFS. Future research on this “chronic fatigue spectrum” should, therefore, use the above-mentioned validated categories and novel tailored algorithms to classify patients into ME, CFS, or CF.

Comment in: Comment and reply on: ME is a distinct diagnostic entity, not part of a chronic fatigue spectrum. [Expert Opin Med Diagn. 2013]

 

Source: Maes M, Anderson G, Morris G, Berk M. Diagnosis of myalgic encephalomyelitis: where are we now? Expert Opin Med Diagn. 2013 May;7(3):221-5. doi: 10.1517/17530059.2013.776039. Epub 2013 Feb 27. https://www.ncbi.nlm.nih.gov/pubmed/23480562

 

Functional somatic syndromes: sensitivities and specificities of self-reports of physician diagnosis

Abstract:

OBJECTIVE: Functional somatic syndromes have no laboratory or pathologic abnormalities and so are diagnosed by symptom-based case definitions. However, many studies, including recent ones, have used self-reports of physician diagnosis rather than the case definitions. Our objective was to determine the sensitivities and specificities of self-report of physician diagnosis for chronic fatigue syndrome (CFS), fibromyalgia (FM), irritable bowel syndrome (IBS), panic disorder, and migraine.

METHODS: Each of 312 female patients with incident interstitial cystitis/bladder pain syndrome and matched population-based controls were queried on self-report of physician diagnosis and separately on established case definitions for each of these syndromes.

RESULTS: Using the symptom-based case definitions as standards, we found that self-report of physician diagnosis did not identify 90% of the controls who had CFS, 77% who had FM, 69% who had IBS, 43% who had panic disorder, and 23% who had migraine. In addition, it missed most individuals with multiple syndromes. Findings in one cohort (controls) were confirmed in another (patients with interstitial cystitis/bladder pain syndrome).

CONCLUSIONS: Self-report of physician diagnosis did not identify most of the three most venerable functional somatic syndromes, IBS, FM, and, especially, CFS; nor did it identify substantial minorities of individuals with panic disorder and migraine. Self-report of physician diagnosis was particularly poor in recognizing persons with multiple syndromes. The insensitivity of this diagnostic test has effects on not only prevalence and incidence estimates but also correlates, comorbidities, and case recruitment. To reveal individuals with these syndromes, singly or together, queries of symptoms, not diagnoses, are necessary.

Comment in: Recalling, reporting, and thinking about diagnoses. [Psychosom Med. 2012]

 

Source: Warren JW, Clauw DJ. Functional somatic syndromes: sensitivities and specificities of self-reports of physician diagnosis. Psychosom Med. 2012 Nov-Dec;74(9):891-5. doi: 10.1097/PSY.0b013e31827264aa. Epub 2012 Oct 15. https://www.ncbi.nlm.nih.gov/pubmed/23071343