Chronic Fatigue Syndrome versus Systemic Exertion Intolerance Disease

Abstract:

BACKGROUND: The Institute of Medicine has recommended a change in the name and criteria for Chronic Fatigue Syndrome (CFS), renaming the illness Systemic Exertion Intolerance Disease (SEID). The new SEID case definition requires substantial reductions or impairments in the ability to engage in pre-illness activities, unrefreshing sleep, post-exertional malaise, and either cognitive impairment or orthostatic intolerance.

PURPOSE: In the current study, samples were generated through several different methods and were used to compare this new case definition to previous case definitions for CFS, Myalgic Encephalomyelitis (ME-ICC), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), as well as a case definition developed through empirical methods.

METHODS: We used a cross-sectional design with samples from tertiary care settings, a biobank sample, and other forums. 796 patients from the US, Great Britain, and Norway completed the DePaul Symptom Questionnaire.

RESULTS: Findings indicated that the SEID criteria identified 88% of participants in the samples analyzed, which is comparable to the 92% that met the Fukuda criteria. The SEID case definition was compared to a four item empiric criteria, and findings indicated that the four item empiric criteria identified a smaller, more functionally limited and symptomatic group of patients.

CONCLUSION: The recently developed SEID criteria appears to identify a group comparable in size to the Fukuda et al. criteria, but a larger group of patients than the Canadian ME/CFS and ME criteria, and selects more patients who have less impairment and fewer symptoms than a four item empiric criteria.

 

Source: Jason LA, Sunnquist M, Brown A, Newton JL, Strand EB, Vernon SD. Chronic Fatigue Syndrome versus Systemic Exertion Intolerance Disease. Fatigue. 2015 Jul;3(3):127-141. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4556426/ (Full article)

 

Reflections on the Institute of Medicine’s systemic exertion intolerance disease

Abstract:

The Institute of Medicine (IOM) in the United States has recently proposed that the term systemic exertion intolerance disease (SEID) replace chronic fatigue syndrome. In addition, the IOM proposed a new case definition for SEID, which includes substantial reductions or impairments in the ability to engage in pre illness activities, unrefreshing sleep, postexertional malaise, and either cognitive impairment or orthostatic intolerance.

Unfortunately, these recommendations for a name change were not vetted with patient and professional audiences, and the new criteria were not evaluated with data sets of patients and controls. A recent poll suggests that the majority of patients reject this new name. In addition, studies have found that prevalence rates will dramatically increase with the new criteria, particularly due to the ambiguity revolving around exclusionary illnesses. Findings suggest that the new criteria select more patients who have less impairment and fewer symptoms than several other criteria. The implications of these findings are discussed in the current review.

 

Source: Jason LA, Sunnquist M, Brown A, McManimen S, Furst J. Reflections on the Institute of Medicine’s systemic exertion intolerance disease. Pol Arch Med Wewn. 2015;125(7-8):576-81. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4826027/ (Full article)

 

Chronic Fatigue Syndrome and Myalgic Encephalomyelitis: Toward An Empirical Case Definition

Abstract:

Current case definitions of Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have been based on consensus methods, but empirical methods could be used to identify core symptoms and thereby improve the reliability. In the present study, several methods (i.e., continuous scores of symptoms, theoretically and empirically derived cut off scores of symptoms) were used to identify core symptoms best differentiating patients from controls. In addition, data mining with decision trees was conducted. Our study found a small number of core symptoms that have good sensitivity and specificity, and these included fatigue, post-exertional malaise, a neurocognitive symptom, and unrefreshing sleep. Outcomes from these analyses suggest that using empirically selected symptoms can help guide the creation of a more reliable case definition.

 

Source: Jason LA, Kot B, Sunnquist M, Brown A, Evans M, Jantke R, Williams Y, Furst J, Vernon SD. Chronic Fatigue Syndrome and Myalgic Encephalomyelitis: Toward An Empirical Case Definition. Health Psychol Behav Med. 2015;3(1):82-93. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4443921/ (Full article)

 

Chronic fatigue syndrome versus sudden onset myalgic encephalomyelitis

Abstract:

A revised sudden onset case definition for Myalgic Encephalomyelitis (ME) has been developed (Jason, Damrongvachiraphan, et al., 2012 ) based on past case definitions. In a prior study, Jason, Brown, and colleagues ( 2012 ) compared patients recruited using the 1994 case definition of chronic fatigue syndrome (CFS) to contrast those meeting criteria for the revised ME criteria.

They found that this revised ME case definition identified patients with more functional impairments and physical, mental, and cognitive problems than those meeting the CFS criteria. The study by Jason, Brown, et al. ( 2012 ) only selected individuals who first met the CFS criteria, and it only relied on one Chicago-based data set. The current study replicated this comparison with two distinct data sets with different case ascertainment methods. Results indicate that the ME criteria identified a group of patients with more functional disabilities as well as more severe post-exertional malaise symptoms.

 

Source: Jason LA, Evans M, Brown A, Sunnquist M, Newton JL. Chronic fatigue syndrome versus sudden onset myalgic encephalomyelitis. J Prev Interv Community. 2015;43(1):62-77. doi: 10.1080/10852352.2014.973233. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4295655/ (Full article)

 

An investigation of symptoms predating CFS onset

Abstract:

The Fukuda et al. (1994) criteria for chronic fatigue syndrome (CFS) specifies that a symptom can only be included within a diagnosis if it is experienced concurrently or following the onset of fatigue. In order to investigate this issue, participants provided information on persisting symptoms (lasting greater than six months) and whether those symptoms occurred prior to, concurrently, or following the onset of their fatigue.

More symptoms were experienced after the fatigue onset than prior to the fatigue onset; however, a considerable number of participants reported experiencing persisting symptoms prior to the onset of CFS. Particularly, rates of hay fever and asthma were higher prior to the illness. Investigating symptoms prior to the onset of the illness might provide investigators with ways to better understand the etiology of this illness.

 

Source: Evans M, Barry M, Im Y, Brown A, Jason LA. An investigation of symptoms predating CFS onset. J Prev Interv Community. 2015;43(1):54-61. doi: 10.1080/10852352.2014.973240. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4830334/ (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)

 

Problems in defining post-exertional malaise

Abstract:

Post-exertional malaise (PEM) is a cardinal symptom of the illnesses referred to as Myalgic Encephalomyelitis (ME), Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic fatigue syndrome (CFS). PEM is reported to occur in many of these patients, and with several criteria (e.g., ME and ME/CFS), this symptom is mandatory (Carruthers et al., 2003 , 2011 ).

In the present study, 32 participants diagnosed with CFS (Fukuda et al., 1994 ) were examined on their responses to self-report items that were developed to capture the characteristics and patterns of PEM. As shown in the results, the slight differences in wording for various items may affect whether one is determined to have PEM according to currently used self-report criteria to assess CFS. Better understanding of how this symptom is assessed might help improve the diagnostic reliability and validity of ME, ME/CFS, and CFS.

 

Source: Jason LA, Evans M, So S, Scott J, Brown A. Problems in defining post-exertional malaise. J Prev Interv Community. 2015;43(1):20-31. doi: 10.1080/10852352.2014.973239. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4295644/ (Full article)

 

Examining the Institute of Medicine’s Recommendations Regarding Chronic Fatigue Syndrome: Clinical Versus Research Criteria

Abstract:

The Institute of Medicine (2015) has proposed a new clinical case definition for what had been known as chronic fatigue syndrome (CFS). This new criteria involved the following domains: substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities; post-exertional malaise; unrefreshing sleep; and at least one of the two following symptoms: cognitive impairment or orthostatic intolerance.

In addition, in August of 2015, the CFS Advisory Committee, which makes recommendations to the Secretary of US Department of Health and Human Services, proposed that the Canadian 2003 criteria should serve as the research case for CFS. Up to now, there have not been any published investigations comparing these clinical and research criteria.

Using patient samples collected in the United States, Great Britain, and Norway, the current study compared and contrasted patients who met the clinical and research criteria. Overall findings indicated that those meeting the research criteria in comparison to those meeting the clinical criteria were significantly more impaired on a wide variety of symptoms and functional areas. The implications of these findings are discussed.

 

Source: Jason LA, McManimen S, Sunnquist M, Brown A, Newton JL, Strand EB. Examining the Institute of Medicine’s Recommendations Regarding Chronic Fatigue Syndrome: Clinical Versus Research Criteria. J Neurol Psychol. 2015;2015(Suppl 2). pii: http://www.avensonline.org/wp-content/uploads/JNP-2332-3469-S2-0002.pdf. Epub 2015 Nov 25. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5008852/ (Full article)

 

The impact of symptom stability on time frame and recall reliability in CFS

Abstract:

OBJECTIVE: This study is an investigation of the potential impact of perceived symptom stability on the recall reliability of symptom severity and frequency as reported by individuals with chronic fatigue syndrome (CFS). Symptoms were recalled using three different recall timeframes (the past week, the past month, and the past six months) and at two assessment points (with one week in between each assessment).

METHODS: Participants were 51 adults (45 women and 6 men), between the ages of 29 and 66 with a current diagnosis of CFS. Multilevel Model (MLM) Analyses were used to determine the optimal recall timeframe (in terms of test-retest reliability) for reporting symptoms perceived as variable and as stable over time.

RESULTS: Headaches were recalled more reliably when they were reported as stable over time. Furthermore, the optimal timeframe in terms of test-retest reliability for stable symptoms was highly uniform, such that all Fukuda CFS symptoms were more reliably recalled at the six month timeframe. Furthermore, the optimal timeframe for CFS symptoms perceived as variable, differed across symptoms.

DISCUSSION: Symptom stability and recall timeframe are important to consider in order to improve the accuracy and reliability of the current methods for diagnosing this illness.

 

Source: Evans M, Jason LA. The impact of symptom stability on time frame and recall reliability in CFS. Cogent Psychol. 2015;2(1). pii: 1079945. Epub 2015 Aug 28. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4831646/ (Full article)