Jason – Page 6 – American ME and CFS Society

Activity measurement in pediatric chronic fatigue syndrome

Abstract:

Objectives: Individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) experience debilitating symptoms, including post-exertional malaise, an intensification of symptoms after physical or cognitive exertion. Previous studies found differences in the activity levels and patterns of activity among individuals with ME and CFS, compared to healthy controls; however, limited research exists on the activity levels of pediatric patients. The objective of this study was to examine differences in activity between healthy children and youth with ME and CFS.

Methods: The present study examines the objective (i.e., ActiGraphy) and self-reported levels of activity among children (ages 5 to 17) enrolled in a community-based study of pediatric CFS.

Results: Children with ME and CFS evidenced lower activity levels than healthy control children. Moreover, participants with ME and CFS evidenced increased nighttime activity and delayed initiation of daytime activity. Participants’ self-reported activity data significantly correlated with their ActiGraph data, suggesting that children with ME and CFS are able to accurately describe their activity level.

Discussion: This study highlights differences in activity level and diurnal/nocturnal activity patterns between healthy children and those with ME and CFS. These differences should be considered in identifying appropriate supports and accommodations for children with ME and CFS.

Source: Loiacono B, Sunnquist M, Nicholson L, Jason LA. Activity measurement in pediatric chronic fatigue syndrome [published online ahead of print, 2020 Aug 17]. Chronic Illn. 2020;1742395320949613. doi:10.1177/1742395320949613 https://pubmed.ncbi.nlm.nih.gov/32806955/

Patients’ hopes for recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Toward a “recovery in” framework

Abstract:

Objective: There is no consensus on recovery from myalgic encephalomyelitis and chronic fatigue syndrome, which has spawned debates when interpreting outcome research. Within these debates, the patient voice is often neglected. This study aimed to understand how patients conceptualize recovery – regarding the definition and possibility of recovery.

Method: We conducted in-depth, semi-structured interviews with 10 older (above age 50) female patients with myalgic encephalomyelitis or chronic fatigue syndrome. Data were analyzed using a deductive thematic analysis.

Results: Our sample viewed recovery as functioning without fear of relapse, returning to previous roles and identities, and achieving a sustained absence of symptoms. Participants expressed skepticism that reaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome exists but working toward significant improvement through coping is a viable goal. Although many accepted they would never reclaim full functioning, participants continued to experience uncertainty about their future with unclear prognostic goals and limited treatment options.

Discussion: Recovery is more than just symptom reduction. Outcome research should incorporate well-being measures like identity, meaning and quality of life, and personal empowerment to enhance recovery definitions. When communicating treatment goals, providers might convey cautious optimism for complete symptom remission, while emphasizing that living a fulfilling life through effective coping strategies is possible.

Source: Devendorf AR, Rown AA, Jason LA. Patients’ hopes for recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Toward a “recovery in” framework. Chronic Illn. 2020;16(4):307-321. doi:10.1177/1742395318815965 https://pubmed.ncbi.nlm.nih.gov/32772569/

Post-viral fatigue and COVID-19: lessons from past epidemics

Abstract:

The COVID-19 pandemic, resulting from Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2), has severely impacted the population worldwide with a great mortality rate. The current article reviews the literature on short- and long-term health consequences of prior epidemics and infections to assess potential health complications that may be associated with post-COVID-19 recovery. Past research on post-epidemic and post-infection recovery has suggested that such complications include the development of severe fatigue.

Certain factors, such as the severity of infection, in addition to the ‘cytokine storm’ experienced by many COVID-19 patients, may contribute to the development of later health problems. We suggest that the patterns observed in past epidemics and infections may re-occur in the current COVID-19 pandemic.

Source: Mohammed F. Islam, Joseph Cotler & Leonard A. Jason (2020) Post-viral fatigue and COVID-19: lessons from past epidemics, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2020.1778227 https://www.tandfonline.com/doi/full/10.1080/21641846.2020.1778227 (Full article)

Research Update: The Relation Between ME/CFS Disease Burden and Research Funding in the USA

Abstract:

Background: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is a debilitating, chronic, multisystem disease that affects an estimated 1 to 2.5 million Americans. It has no widely accepted biomarkers and no FDA-approved treatment. ME/CFS has traditionally been one of the lowest funded diseases by the United States National Institutes of Health (NIH).

Objectives: We provide here an update to our 2016 article, which estimated the disease burden of ME/CFS in the United States in 2013 and its relation to NIH’s 2015 analysis of research funding and disease burden. This update incorporates more recent burden data from 2015 and funding data from 2017.

Methods: We perform a regression analysis on funding versus disease burden to determine 2017 funding levels that would be commensurate with burden. Burden figures for 2017 are estimated using population-based extrapolations of earlier data.

Results: We find the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. We also find that ME/CFS is more underfunded with respect to burden than any disease in NIH’s analysis of funding and disease burden, with ME/CFS receiving roughly 7% of that commensurate with disease burden.

Conclusions: To be commensurate with disease burden, NIH funding would need to increase roughly 14-fold.

Source: Mirin AA, Dimmock ME, Jason LA. Research update: The relation between ME/CFS disease burden and research funding in the USA [published online ahead of print, 2020 Jun 16]. Work. 2020;10.3233/WOR-203173. doi:10.3233/WOR-203173 https://pubmed.ncbi.nlm.nih.gov/32568148/

Risk Factors for Suicide in Chronic Fatigue Syndrome

Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) includes symptoms such as post-exertional malaise, unrefreshing sleep, and cognitive impairments. Several studies suggest these patients have an increased risk of suicidal ideation and early mortality, although few have published in this area.

This study explores risk factors for suicide among 64 individuals with ME/CFS using archival data, 17 of which died from suicide. Results indicated an increased risk of suicide for those for those utilizing the label CFS, for those with limited overall functioning, and for those without comorbid illnesses. Findings suggest that stigma and functional impairments limit access to care and social supports.

Source: Johnson ML, Cotler J, Terman JM, Jason LA. Risk factors for suicide in chronic fatigue syndrome [published online ahead of print, 2020 Jun 12]. Death Stud. 2020;1‐7. doi:10.1080/07481187.2020.1776789

Solving the ME/CFS criteria and name conundrum: the aftermath of IOM

Abstract:

In 2015, the Institute of Medicine (IOM) proposed a new name and set of clinical criteria for what had previously been referred to as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This committee recommended the adoption of the term systemic exertion intolerance disease (SEID) and clinical criteria that required specific symptoms such as post-exertional malaise and unrefreshing sleep.

This article reviews efforts to evaluate the revised criteria as well as reactions to the new criteria and name. Since these recommendations have been made, the proposed name change has not been widely adopted by the scientific or patient community. Even though the IOM’s proposed criteria were intended to be a clinical rather than a research case definition, over the past few years, an increasing number of studies have employed these criteria for research purposes. One unwitting consequence of the IOM criteria, which excludes few other illnesses, is the broadening of the number of individuals who are diagnosed and included in research studies.

There is still a need to implement the IOM’s recommendation to form a multidisciplinary committee to review research and policy changes following the release of the new criteria. We conclude by presenting a possible roadmap for overcoming barriers in order to make progress on developing a consensus for a name and criteria.

Source: Leonard A. Jason & Madeline Johnson (2020) Solving the ME/CFS criteria and name conundrum: the aftermath of IOM, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2020.1757809 https://www.tandfonline.com/doi/abs/10.1080/21641846.2020.1757809?journalCode=rftg20

The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample

Abstract:

Background: Most pediatric prevalence studies of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been based upon data from tertiary care centers, a process known for systematic biases such as excluding youth of lower socioeconomic status and those less likely to have access to health care. In addition, most pediatric ME/CFS epidemiologic studies have not included a thorough medical and psychiatric examination. The purpose of this study was to determine the prevalence of pediatric ME/CFS from an ethnically and sociodemographically diverse community-based random sample.

Method: A sample of 10,119 youth aged 5–17 from 5622 households in the Chicagoland area were screened. Following evaluations, a team of physicians made final diagnoses. Youth were given a diagnosis of ME/CFS if they met criteria for three selected case definitions. A probabilistic, multi-stage formula was used for final prevalence calculations.

Results: The prevalence of pediatric ME/CFS was 0.75%, with a higher percentage being African American and Latinx than Caucasian. Of the youth diagnosed with ME/CFS, less than 5% had been previously diagnosed with the illness.

Conclusions: Many youth with the illness have not been previously diagnosed with ME/CFS. These findings point to the need for better ways to identify and diagnose youth with this illness.

Source: Jason, L.A., Katz, B.Z., Sunnquist, M. et al. The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample. Child Youth Care Forum (2020). https://doi.org/10.1007/s10566-019-09543-3. https://link.springer.com/article/10.1007%2Fs10566-019-09543-3

Myalgic encephalomyelitis and chronic fatigue syndrome case definitions: effects of requiring a substantial reduction in functioning

Abstract:

BACKGROUND: Current case definitions for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) require an individual to report a ‘substantial reduction’ in activity levels, when compared to premorbid functioning. However, little guidance is provided on how to measure these reductions, as well as what level of reduction should be deemed ‘substantial,’ leading to inconsistencies in how this criterion is applied across research settings.

PURPOSE: The current study examined the influence of substantial reduction criterion on case definitions.

METHOD: The current study analyzed an international convenience sample of 1002 individuals with ME or CFS, 53 healthy controls, and 260 controls with other chronic illnesses.

RESULTS: Findings indicated that the utility of the substantial reduction criterion varied by case definition, with more stringent case definitions not needing this criterion to identify cases.

CONCLUSION: These results suggest that the requirement of a substantial reduction in functioning may be redundant when case definitions specify that individuals must endorse a set of core symptoms at specified frequency and severity levels.

Source: Scartozzi S, Sunnquist M, Jason LA. Myalgic encephalomyelitis and chronic fatigue syndrome case definitions: effects of requiring a substantial reduction in functioning. Fatigue. 2019;7(2):59-68. doi: 10.1080/21641846.2019.1600825. Epub 2019 Apr 1. https://www.ncbi.nlm.nih.gov/pubmed/31788347

Differentiating post-polio syndrome from myalgic encephalomyelitis and chronic fatigue syndrome

Abstract:

Background: Overlapping and concomitant symptoms among similar chronic illnesses have created difficulties for diagnosis and further treatment. Three such chronically fatiguing illnesses, Post-polio syndrome (PPS), Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) fall under this category.

Purpose: The aim of this study is to examine and distinguish between core symptoms found in these illnesses (i.e. muscle pain/weakness, fatigue or exhaustion, and autonomic symptoms) via three methods of analysis (DePaul Symptom Questionnaire 2 (DSQ-2), Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), and machine learning techniques).

Results: Items assessing onset and severity for individuals who reported having PPS were found to have experienced an onset of PPS related symptoms roughly 30 years after the onset of Polio. Items found in the DSQ-2, SF-36 compared all illness groups and found that participants with ME/CFS were more functionally impaired across symptoms than those with PPS. Across all analyses, three domains most commonly differentiated the illnesses (neurocognitive, Post-exertional malaise, and neuroendocrine).

Conclusion: Examining functional impairment amongst chronically fatiguing illnesses using multiple methods of analysis can be an important factor in distinguishing similar illnesses. These findings support further analysis of analogous symptomatology among other chronic illnesses to assist in diagnosis.

Source: Lauren Klebek, Madison Sunnquist & Leonard A. Jason (2019) Differentiating post-polio syndrome from myalgic encephalomyelitis and chronic fatigue syndrome, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2019.1687117 https://www.tandfonline.com/doi/abs/10.1080/21641846.2019.1687117

The development of a short form of the DePaul Symptom Questionnaire

Abstract:

PURPOSE/OBJECTIVE: The DePaul Symptom Questionnaire (DSQ) is a widely used instrument that assesses common symptoms of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). The DSQ has strong psychometric properties; however, it consists of 99 items, and the energy limitations and cognitive difficulties experienced by individuals with ME and CFS may hinder their ability to easily complete the questionnaire.

METHOD: The current study examined symptom prevalence and discriminative ability to develop a short form of the DSQ (DSQ-SF).

RESULTS: The resulting short form questionnaire consists of 14 items that were highly prevalent among individuals with ME and CFS. Additionally, the items demonstrated the ability to differentiate individuals with ME and CFS from adult controls and, to a lesser extent, individuals with multiple sclerosis.

CONCLUSIONS/IMPLICATIONS: The DSQ-SF may serve as an effective, brief screening tool for symptoms of ME and CFS.

Source: Sunnquist M, Lazarus S, Jason LA. The development of a short form of the DePaul Symptom Questionnaire. Rehabil Psychol. 2019 Jul 18. doi: 10.1037/rep0000285. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/31318234