Diagnosis – Page 8 – American ME and CFS Society

Factor Analysis of the DePaul Symptom Questionnaire: Identifying Core Domains

Abstract:

The present study attempted to identify critical symptom domains of individuals with Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Using patient and control samples collected in the United States, Great Britain, and Norway, exploratory factor analysis (EFA) was used to establish the underlying factor structure of ME and CFS symptoms.

The EFA suggested a four-factor solution: post-exertional malaise, cognitive dysfunction, sleep difficulties, and a combined factor consisting of neuroendocrine, autonomic, and immune dysfunction symptoms. The use of empirical methods could help better understand the fundamental symptom domains of this illness.

Source: Jason LA, Sunnquist M, Brown A, Furst J, Cid M, Farietta J, Kot B, Bloomer C, Nicholson L, Williams Y, Jantke R, Newton JL, Strand EB. Factor Analysis of the DePaul Symptom Questionnaire: Identifying Core Domains. J Neurol Neurobiol. 2015 Sep;1(4). doi: 10.16966/2379-7150.114. Epub 2015 Sep 17. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4830389/ (Full article)

Replacing Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with Systemic Exercise Intolerance Disease Is Not the Way forward

Abstract:

Myalgic encephalomyelitis (ME), described in the medical literature since 1938, is characterized by distinctive muscular symptoms, neurological symptoms, and signs of circulatory impairment. The only mandatory feature of chronic fatigue syndrome (CFS), introduced in 1988 and redefined in 1994, is chronic fatigue, which should be accompanied by at least four or more out of eight “additional” symptoms.

The use of the abstract, polythetic criteria of CFS, which define a heterogeneous patient population, and self-report has hampered both scientific progress and accurate diagnosis. To resolve the “diagnostic impasse” the Institute of Medicine proposes that a new clinical entity, systemic exercise intolerance disease (SEID), should replace the clinical entities ME and CFS. However, adopting SEID and its defining symptoms, does not resolve methodological and diagnostic issues.

Firstly, a new diagnostic entity cannot replace two distinct, partially overlapping, clinical entities such as ME and CFS. Secondly, due to the nature of the diagnostic criteria, the employment of self-report, and the lack of criteria to exclude patients with other conditions, the SEID criteria seem to select an even more heterogeneous patient population, causing additional diagnostic confusion. This article discusses methodological and diagnostic issues related to SEID and proposes a methodological solution for the current “diagnostic impasse”.

Source: Twisk FN. Replacing Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with Systemic Exercise Intolerance Disease Is Not the Way forward. Diagnostics (Basel). 2016 Feb 5;6(1). pii: E10. doi: 10.3390/diagnostics6010010. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4808825/ (Full article)

Accurate diagnosis of myalgic encephalomyelitis and chronic fatigue syndrome based upon objective test methods for characteristic symptoms

Abstract:

Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent to CFS, let alone a severe variant of incapacitating chronic fatigue.

Distinctive features of ME are: muscle weakness and easy muscle fatigability, cognitive impairment, circulatory deficits, a marked variability of the symptoms in presence and severity, but above all, post-exertional “malaise”: a (delayed) prolonged aggravation of symptoms after a minor exertion. In contrast, CFS is primarily defined by (unexplained) chronic fatigue, which should be accompanied by four out of a list of 8 symptoms, e.g., headaches.

Due to the subjective nature of several symptoms of ME and CFS, researchers and clinicians have questioned the physiological origin of these symptoms and qualified ME and CFS as functional somatic syndromes. However, various characteristic symptoms, e.g., post-exertional “malaise” and muscle weakness, can be assessed objectively using well-accepted methods, e.g., cardiopulmonary exercise tests and cognitive tests. The objective measures acquired by these methods should be used to accurately diagnose patients, to evaluate the severity and impact of the illness objectively and to assess the positive and negative effects of proposed therapies impartially.

Source: Twisk FN. Accurate diagnosis of myalgic encephalomyelitis and chronic fatigue syndrome based upon objective test methods for characteristic symptoms. World J Methodol. 2015 Jun 26;5(2):68-87. doi: 10.5662/wjm.v5.i2.68. ECollection 2015. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4482824/ (Full article)

Hybrid facial image feature extraction and recognition for non-invasive chronic fatigue syndrome diagnosis

Abstract:

Due to an absence of reliable biochemical markers, the diagnosis of chronic fatigue syndrome (CFS) mainly relies on the clinical symptoms, and the experience and skill of the doctors currently. To improve objectivity and reduce work intensity, a hybrid facial feature is proposed.

First, several kinds of appearance features are identified in different facial regions according to clinical observations of traditional Chinese medicine experts, including vertical striped wrinkles on the forehead, puffiness of the lower eyelid, the skin colour of the cheeks, nose and lips, and the shape of the mouth corner. Afterwards, such features are extracted and systematically combined to form a hybrid feature.

We divide the face into several regions based on twelve active appearance model (AAM) feature points, and ten straight lines across them. Then, Gabor wavelet filtering, CIELab color components, threshold-based segmentation and curve fitting are applied to extract features, and Gabor features are reduced by a manifold preserving projection method. Finally, an AdaBoost based score level fusion of multi-modal features is performed after classification of each feature.

Despite that the subjects involved in this trial are exclusively Chinese, the method achieves an average accuracy of 89.04% on the training set and 88.32% on the testing set based on the K-fold cross-validation. In addition, the method also possesses desirable sensitivity and specificity on CFS prediction.

Source: Chen Y, Liu W, Zhang L, Yan M, Zeng Y. Hybrid facial image feature extraction and recognition for non-invasive chronic fatigue syndrome diagnosis. Comput Biol Med. 2015 Sep;64:30-9. doi: 10.1016/j.compbiomed.2015.06.005. Epub 2015 Jun 15. https://www.ncbi.nlm.nih.gov/pubmed/26117650

Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop

Abstract:

BACKGROUND: The diagnosis of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is based on clinical criteria, yet there has been no consensus regarding which set of criteria best identifies patients with the condition. The Institute of Medicine has recently proposed a new case definition and diagnostic algorithm.

PURPOSE: To review methods to diagnose ME/CFS in adults and identify research gaps and needs for future research.

DATA SOURCES: MEDLINE, PsycINFO, and Cochrane databases (January 1988 to September 2014); clinical trial registries; and reference lists.

STUDY SELECTION: English-language studies describing methods of diagnosis of ME/CFS and their accuracy.

DATA EXTRACTION: Data on participants, study design, analysis, follow-up, and results were extracted and confirmed. Study quality was dual-rated by using prespecified criteria, and discrepancies were resolved through consensus.

DATA SYNTHESIS: Forty-four studies met inclusion criteria. Eight case definitions have been used to define ME/CFS; a ninth, recently proposed by the Institute of Medicine, includes principal elements of previous definitions. Patients meeting criteria for ME represent a more symptomatic subset of the broader ME/CFS population. Scales rating self-reported symptoms differentiate patients with ME/CFS from healthy controls under study conditions but have not been evaluated in clinically undiagnosed patients to determine validity and generalizability.

LIMITATIONS: Studies were heterogeneous and were limited by size, number, applicability, and methodological quality. Most methods were tested in highly selected patient populations.

CONCLUSION: Nine sets of clinical criteria are available to define ME/CFS, yet none of the current diagnostic methods have been adequately tested to identify patients with ME/CFS when diagnostic uncertainty exists. More definitive studies in broader populations are needed to address these research gaps.

Source: Haney E, Smith ME, McDonagh M, Pappas M, Daeges M, Wasson N, Nelson HD. Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop. Ann Intern Med. 2015 Jun 16;162(12):834-40. doi: 10.7326/M15-0443. http://annals.org/aim/article/2322800/diagnostic-methods-myalgic-encephalomyelitis-chronic-fatigue-syndrome-systematic-review-national (Full article)

Comments

Ellen M Goudsmit 2015 Dec 02

Sad to note today that the journal chose to publish letters, favouring opinion above the correction of factual errors. How can science progress if editors collude in the perpetuation of inaccuracies and myths? Who will know that there ARE research criteria for ME as described by Ramsay? That there are helpful alternatives to CBT and GET?

Postscript 2016. The editors decided not to publish the comment as a letter in the journal as they rejected the view that there were factual errors. Thus while I was not a co-author of the criteria cited in the article, and I’m not named in the reference given, listing me as a co-author is not a ‘factual error’ in their eyes. Nor is the claim that a trial I discussed selected patients using two sets of criteria, not just the one referred to in the article. In my view, this failure to correct errors and misleading information is inconsistent with good science.
Ellen M Goudsmit 2015 Jul 17
As someone who has studied myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) since the 1980s, I appreciate the work completed by The National Institutes of Health Pathways to Prevention Workshops on what is now known as ME/CFS. Unfortunately, some of the information in the two reviews is inaccurate, incomplete and misleading (1,2). For example, in the report on diagnostic methods, the reviewers included the London criteria for ME but gave details in the table based on a version written by a layperson, rather than the four individuals cited in their reference (3). Moreover, they did not consider the updated criteria for ME (4), although one of the authors had emailed the panel on two separate occasions during the consultation phase to alert them to their existence.

The second review (2) encourages further research on subgroups and outcomes other than fatigue and function but did not identify one of the few controlled studies which had employed such a design (5). For instance, in the Appendix, Table 1 lists the programme evaluated by Goudsmit and colleagues under ‘counseling and behavioural therapies’, and describes the treatment as ‘counseling’. It also states that patients were selected using the Oxford criteria, that the duration of follow-up was six months and that the outcomes were function and fatigue.

In fact, the trial evaluated a physician-led multi-component programme comprising medical care, information on the illness, diet and relaxation, as well as advice on activity management and some counselling (5). It was conducted in the naturalistic setting of an NHS hospital clinic, patients were diagnosed using criteria for post-viral fatigue syndrome as well as the Oxford criteria, and data were available for a number of symptoms including cognitive impairment, as well as other variables. Fatigue improved as noted in the review but the latter did not convey that 82% of the patients rated themselves as ‘better’, that 23% were well enough to be discharged at six months and that the improvements were maintained at 1 year. Given the missing details, the study’s rating as ‘poor’ is understandable.

The reviewers concluded that “more definitive studies comparing participants meeting different case definitions, including ME… are needed to fill research gaps”. It was therefore disappointing that they did not recognise the positive aspects of a study that used a different case definition and assessed a range of symptoms, not just fatigue.
1. Haney E, Smith MEB, McDonagh M, Pappas M, Daeges M, Wasson N, et al. Diagnostic methods for myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review for a National Institutes of Health Pathways to Prevention Workshop. Ann Intern Med. 2015;162: 834-40. [PMID: 26075754] doi:10.7326/M15-0443
2. Smith MEB, Haney E, McDonagh M, Pappas M, Daeges M, Wasson N, et al. Treatment of myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review for a National Institutes of Health Pathways to Prevention Workshop. Ann Intern Med. 2015;162:841-
3. [PMID: 26075755] doi:10.7326/M15-0114
4. Dowsett E, Goudsmit E, Macintyre A, Shepherd C. London Criteria for myalgic encephalomyelitis. In: Report from The National Task Force on Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Myalgic Encephalomyelitis (ME). Westcare. 1994. 96-98. Available from: http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/national task force.pdf
5. Goudsmit E, Shepherd C, Dancy CP, Howes S. ME: Chronic fatigue syndrome or a distinct clinical entity? Health Psychol Update. 2009;18(1):26-33. Available from: http://shop.bps.org.uk/publications/publications-by-subject/health/health-psychology-update-vol-18-no-1-2009.html
6. Goudsmit EM, Ho-Yen DO, Dancey CP. Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome. Patient Educ Couns. 2009;77:231–6. [PMID: 19576714 ] doi:10.1016/j.pec.2009.05.015
Ellen M Goudsmit PhD FBPsS

Comment also on Annals of Internal Medicine website under Haney et al.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

Excerpt:

Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that affect millions of people in the United States and around the world. ME/CFS can cause significant impairment and disability. Despite substantial efforts by researchers to better understand ME/CFS, there is no known cause or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological — rather than psychological — nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome proposes new diagnostic clinical criteria for ME/CFS and a new term for the illness — systemic exertion intolerance disease(SEID). According to this report, the term myalgic encephalomyelitis does not accurately describe this illness, and the term chronic fatigue syndrome can result in trivialization and stigmatization for patients afflicted with this illness. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome stresses that SEID is a medical — not a psychiatric or psychological — illness.

This report lists the major symptoms of SEID and recommends a diagnostic process.One of the report’s most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis. The new criteria will allow a large percentage of undiagnosed patients to receive an accurate diagnosis and appropriate care. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will be a valuable resource to promote the prompt diagnosis of patients with this complex, multisystem, and often devastating disorder; enhance public understanding; and provide a firm foundation for future improvements in diagnosis and treatment.

Source: Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb. The National Academies Collection: Reports funded by National Institutes of Health. https://www.ncbi.nlm.nih.gov/books/NBK274235/ (Full article)

Complications in operationalizing lifelong fatigue as an exclusionary criterion

Abstract:

The case definitions for chronic fatigue syndrome (CFS) and chronic fatigue syndrome/Myalgic Encephalomyelitis (ME) stipulate that the experience of lifelong fatigue is an exclusionary criterion (Carruthers et al., 2003 ; Fukuda et al., 1994 ). This article examines the lifelong fatigue construct and identifies potential validity and reliability issues in using lifelong fatigue as an exclusionary condition.

Participants in the current study completed the DePaul Symptom Questionnaire (Jason et al., 2010 ), and responses were examined to determine if they had experienced lifelong fatigue. This article discusses the extensive process that was needed to confidently discern which participants had or did not have lifelong fatigue. Using the most rigorous standards, few individuals were classified as having lifelong fatigue. In addition, those with and without lifelong fatigue had few significant differences in symptoms and functional areas. This article concludes with a recommendation that lifelong fatigue should no longer be used as an exclusionary criterion for CFS or ME/CFS.

Source: Sunnquist M, Jason LA, Brown A, Evans M, Berman A. Complications in operationalizing lifelong fatigue as an exclusionary criterion. J Prev Interv Community. 2015;43(1):42-53. doi: 10.1080/10852352.2014.973238. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4295633/ (Full article)

Are stamina and fatigue polar opposites? A case study

Abstract:

Most individuals with Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) (Carruthers et al., 2003 ), Myalgic Encephalomyelitis (ME) (Carruthers et al., 2011 ), and chronic fatigue syndrome (CFS) (Fukuda et al., 1994 ) indicate that they experience fatigue and sharp decreases in energy levels, which hinder the ability to engage in physical activities (Friedberg & Jason, 1998 ). However, there are some individuals who reduce activity engagement in order to avoid a worsening of symptoms; thus these individuals may endorse lower levels of fatigue.

Accordingly, those with low levels of fatigue but low endurance/stamina might be inadvertently excluded from some criteria based on the fatigue requirement. The current study serves as an exploration of the relationship between fatigue and stamina and the effects of these constructs on illness symptomology and their implications for assessment and diagnosis.

Source: So S, Evans M, Jason LA, Brown A. Are stamina and fatigue polar opposites? A case study. J Prev Interv Community. 2015;43(1):32-41. doi: 10.1080/10852352.2014.973235. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4295717/ (Full article)

Defining Essential Features of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Abstract:

Considerable debate surrounds the search for the defining features of patients with Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Current case definitions were created through clinical consensus. Failure to operationalize these case definitions has led to considerable variability in the identification of patients. In addition, some case definitions (e.g., Fukuda et al., 1994) do not require cardinal symptoms of this illness, where as other case definitions do require core symptoms of this illness (Carruthers et al., 2003, 2011), and these latter case criteria appear to identify a more impaired group of patients.

Criterion variance is most likely to occur when operationally explicit criteria do not exist for diagnostic categories (Spitzer, Endicott, & Robins, 1978), or when there are varying criteria for contrasting case definitions, which is an impediment to the research in this field. To deal with this problem, it is possible to differentiate those that meet more loosely defined criteria from those that are more narrowly and defined, thus differentiating CFS from ME.

In order to progress the search for biological markers and effective treatments, essential features need to be operationalized and broadly used in order to increase the probability that individuals included in samples have the same underlying illness.

Source: Jason LA, Sunnquist M, Brown A, Reed J. Defining Essential Features of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. J Hum Behav Soc Environ. 2015;25(6):657-674. Epub 2015 May 6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4817848/ (Full article)

Diagnosing Chronic Fatigue Syndrome in South Asians: Lessons from a Secondary Analysis of a UK Qualitative Study

Abstract:

BACKGROUND: Chronic fatigue syndrome/myalgic encephalitis (CFS/ME) is rarely diagnosed in South Asia (SA), although the symptoms of this condition are seen in the population. Lessons from UK based South Asian, Black and Minority Ethnic (BME) communities may be of value in identifying barriers to diagnosis of CFS/ME in SA.

OBJECTIVES: To explore why CFS/ME may not be commonly diagnosed in SA.

SETTINGS AND DESIGN: A secondary analysis of qualitative data on the diagnosis and management of CFS/ME in BME people of predominantly South Asian origin in the UK using 27 semi-structured qualitative interviews with people with CFE/ME, carers, general practitioners (GPs), and community leaders.

RESULTS: CFS/ME is seen among the BME communities in the UK. People from BME communities in the UK can present to healthcare practitioners with vague physical complaints and they can hold a biomedical model of illness. Patients found it useful to have a label of CFS/ME although some GPs felt it to be a negative label. Access to healthcare can be limited by GPs reluctance to diagnose CFS/ME, their lack of knowledge and patients negative experiences. Cultural aspects among BME patients in the UK also act as a barrier to the diagnosis of CFS/ME.

CONCLUSION: Cultural values and practices influence the diagnosis of CFS/ME in BME communities. The variations in the perceptions around CFS/ME among patients, carers, and health professionals may pose challenges in diagnosing CFS/ME in SA as well. Raising awareness of CFS/ME would improve the diagnosis and management of patients with CFS/ME in SA.

Source: De Silva RE, Bayliss K, Riste L, Chew-Graham CA.Diagnosing Chronic Fatigue Syndrome in South Asians: Lessons from a Secondary Analysis of a UK Qualitative Study. J Family Med Prim Care. 2013 Jul;2(3):277-82. Doi: 10.4103/2249-4863.120765. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3902687/ (Full article)