Category: Prevalence

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

Prevalence and characteristics of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in Poland: a cross-sectional study

Abstract:

OBJECTIVES: The aim of this study was to estimate the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and describe illness characteristics in a community population in Poland.

DESIGN: cross-sectional study.

SETTING: Poland.

PARTICIPANTS: Of the cohort of 1400 who self-presented with fatigue only 69 subsequently were confirmed as having CFS/ME using the Fukuda criteria.

MAIN OUTCOME MEASURES: Participants completed the following screening symptom assessment tools: Chalder Fatigue Scale, Hospital Anxiety and Depression Scale (HADS), Epworth Sleepiness Scale (ESS), Composite Autonomic Symptom Score 31 (COMPASS 31), Quality of Life Scale (QOLS). Haemodynamic and autonomic parameters were automatically measured at rest with a Task Force Monitor.

RESULTS: In 1308, from 1400 (93%) individuals who identified themselves as fatigued, recognised chronic conditions were identified, for example, neurological (n=280, 21.5%), neurodegenerative (n=200, 15%), psychiatric (n=654, 50%) and immunologic (n=174, 13.5%) disorders. The remaining 69 participants (mean age 38.3±8.5) met the Fukuda defintion for CFS/ME and had baseline objective assessment. The majority had experienced symptoms for over 2 years with 37% having symptoms for 2-5 years and 21.7% for more than 10 years. The COMPASS 31 indicated that 50% have symptoms consistent with orthostatic intolerance. About 43/69 (62%) had Epworth sleepiness scores ≥10, ie, consistent with excessive daytime sleepiness, 26/69 (38%) had significant anxiety and 22/69 (32%) depression measured by HADS A & D. Quality of life is significantly impaired in those with Fukuda criteria CFS (QLS score 64±11) with significant negative relationships between quality of life and fatigue (p<0.0001), anxiety (p=0.0009), depression (p<0.0001) and autonomic symptoms (p=0.04).

CONCLUSION: This is the first study to summarise illness characteristics of Polish CFS/ME patients. Our study has confirmed that fatigue is a common and under-recognised symptom affecting the Polish population.

Source: Słomko J, Newton JL, Kujawski S, Tafil-Klawe M, Klawe J, Staines D, Marshall-Gradisnik S, Zalewski P. Prevalence and characteristics of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in Poland: a cross-sectional study. BMJ Open. 2019 Mar 7;9(3):e023955. doi: 10.1136/bmjopen-2018-023955. https://bmjopen.bmj.com/content/9/3/e023955.long (Full study)

Estimating Prevalence, Demographics and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning

Abstract:

Techniques of data mining and machine learning were applied to a large database of medical and facility claims from commercially insured patients to determine the prevalence, gender demographics, and costs for individuals with provider-assigned diagnosis codes for myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS). The frequency of diagnosis was 519 – 1,038/100,000 with the relative risk of females being diagnosed with ME or CFS compared to males 1.238 and 1.178, respectively. While the percentage of women diagnosed with ME/CFS is higher than the percentage of men, ME/CFS is not a “woman’s disease.” Thirty-five to forty percent of diagnosed patients are men. Extrapolating from this frequency of diagnosis and based on the estimated 2017 population of the United States, a rough estimate for the number of patients who may be diagnosed with ME or CFS in the U.S. is 1.7 million to 3.38 million.

Patients diagnosed with CFS appear to represent a more heterogeneous group than those diagnosed with ME. A machine learning model based on characteristics of individuals diagnosed with ME was developed and applied, resulting in a predicted prevalence of 857/100,000 (p>0.01), or roughly 2.8 million in the U.S.

Average annual costs for individuals with a diagnosis of ME or CFS were compared with those for lupus (all categories) and multiple sclerosis (MS), and found to be 50% higher for ME and CFS than for lupus or MS, and three to four times higher than for the general insured population.

A separate aspect of the study attempted to determine if a diagnosis of ME or CFS could be predicted based on symptom codes in the insurance claims records. Due to the absence of specific codes for some core symptoms, we were unable to validate that the information in insurance claims records is sufficient to identify diagnosed patients or suggest that a diagnosis of ME or CFS should be considered based solely on looking for presence of those symptoms.

These results show that a prevalence rate of 857/100,000 for ME/CFS is not unreasonable; therefore, it is not a rare disease, but in fact a relatively common one.

Source: Ashley Valdez, Elizabeth E. Hancock, Seyi Adebayo, David Kiernicki, Daniel Proskauer, John R. Attewell, Lucinda Bateman, Alfred DeMaria, Jr, Charles W. Lapp, Peter C. Rowe and Charmian Proskauer. Estimating Prevalence, Demographics and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning. Front. Pediatr. | doi: 10.3389/fped.2018.00412  https://www.frontiersin.org/articles/10.3389/fped.2018.00412/full (Full article)

Defining the prevalence and symptom burden of those with self-reported severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a two-phase community pilot study in the North East of England

Abstract:

OBJECTIVES:
To define the prevalence of severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and its clinical characteristics in a geographically defined area of Northern England. To understand the feasibility of a community-based research study in the severely affected CFS/ME group.

DESIGN: A two-phase clinical cohort study to pilot a series of investigations in participants own homes.

SETTING: Participants were community living from the area defined by the Northern clinical network of the UK.

PARTICIPANTS: Adults with either a medical or a self-reported diagnosis of CFS/ME. Phase 1 involved the creation of a database. Phase 2: five participants were selected from database, dependent on their proximity to Newcastle.

INTERVENTIONS: The De Paul fatigue questionnaire itemised symptoms of CFS/ME, the Barthel Functional Outcome Measure and demographic questions were collected via postal return. For phase 2, five participants were subsequently invited to participate in the pilot study.

RESULTS: 483 questionnaire packs were requested, 63 were returned in various stages of completion. 56 De Paul fatigue questionnaires were returned: all but 12 met one of the CFS/ME criteria, but 12 or 22% of individuals did not fulfil the Fukuda nor the Clinical Canadian Criteria CFS/ME diagnostic criteria but 6 of them indicated that their fatigue was related to other causes and they barely had any symptoms. The five pilot participants completed 60% of the planned visits.

CONCLUSIONS: Severely affected CFS/ME individuals are keen to participate in research, however, their symptom burden is great and quality of life is poor. These factors must be considered when planning research and methods of engaging with such a cohort.

© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Source: Strassheim VJ, Sunnquist M, Jason LA, Newton JL. Defining the prevalence and symptom burden of those with self-reported severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a two-phase community pilot study in the North East of England. BMJ Open. 2018 Sep 19;8(9):e020775. doi: 10.1136/bmjopen-2017-020775. https://bmjopen.bmj.com/content/8/9/e020775.long (Full article)

Prevalence and incidence of myalgic encephalomyelitis/chronic fatigue syndrome in Europe-the Euro-epiME study from the European network EUROMENE: a protocol for a systematic review

Abstract:

INTRODUCTION: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic disease involving central nervous system and immune system disorders, as well as cardiovascular abnormalities. ME/CFS is characterised by severe chronic fatigue lasting for at least 6 months, including clinical symptoms such as tender cervical or axillary lymph nodes, muscle pain, joint pain without swelling or redness, post-exertional malaise for more than 24 hours and unrefreshing sleep. Studies on the epidemiology of ME/CFS in Europe only include single countries and, therefore, the prevalence and incidence of ME/CFS in Europe (as a whole) is unknown. One of the purposes of the European Network on ME/CFS (EUROMENE; European Union-funded COST Action; Reference number: 15111) is to address this gap in knowledge. We will systematically review the literature reporting figures from European countries to provide a robust summary and identify new challenges.

METHODS AND ANALYSIS: We will systematically search the literature databases Scopus, PubMed and Web of Science for studies published in the last 10 years (ie, after 2007). No language restriction will be applied. Two independent reviewers will search, screen and select studies as well as extract data about their main characteristics and evaluate their methodological and reporting quality. When disagreements emerge, the reviewers will discuss to reach a consensus. We plan to produce a narrative summary of our findings as we anticipate that studies are scarce and heterogeneous. The possibility of performing meta-analyses will be discussed in a EUROMENE meeting.

ETHICS AND DISSEMINATION: Ethical approval is not required as only publicly available data will be included. Findings will be described in EUROMENE reports, published in peer-reviewed journal(s) and presented at conferences. The findings will be also communicated to policy-makers, healthcare providers, people with ME/CFS and other sections of society through regular channels including the mass-media.

PROSPERO REGISTRATION NUMBER: CRD42017078688.

© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Source: Estévez-López F, Castro-Marrero J, Wang X, Bakken IJ, Ivanovs A, Nacul L, Sepúlveda N, Strand EB, Pheby D, Alegre J, Scheibenbogen C, Shikova E, Lorusso L, Capelli E, Sekulic S, Lacerda E, Murovska M; European Network on ME/CFS (EUROMENE). Prevalence and incidence of myalgic encephalomyelitis/chronic fatigue syndrome in Europe-the Euro-epiME study from the European network EUROMENE: a protocol for a systematic review. BMJ Open. 2018 Sep 4;8(9):e020817. doi: 10.1136/bmjopen-2017-020817. https://www.ncbi.nlm.nih.gov/pubmed/30181183

Recent insights into 3 underrecognized conditions

The Ontario Ministry of Health and Long-Term Care recently released the interim report of a task force charged with providing recommendations on 3 symptom-based conditions that have both shared and distinctive features (Box 1): myalgic encephalomyelitis–chronic fatigue syndrome (ME-CFS), fibromyalgia (FM), and environmental sensitivities–multiple chemical sensitivity (ES-MCS).

You can read the report HERE.

Chronic fatigue syndrome in Chinese middle-school students

Abstract:

The objective of the present study was to determine the prevalence of chronic fatigue syndrome (CFS) and its associated factors in middle-school students in Suzhou, China. From September 2010 to January 2011, across-sectional study was conducted in junior- and senior middle-school students aged 10 to 18 years using a battery of confidential questionnaires. Our results indicate that 18,139 completed the questionnaires effectively, of whom 163 (0.9%) met the definition of CFS, with senior high-school students and male students predominating. The prevalence of CFS in the middle-school students increased steadily with age. The main symptoms of CFS in these students included being afraid of going to school, despondency, and irritability in addition to those specified in the Centers for Disease Control and Prevention (CDC). Our study shows that CFS is prevalent among Chinese teenagers, and requiring proper intervention and treatment.

Source: Shi J, Shen J, Xie J, Zhi J, Xu Y. Chronic fatigue syndrome in Chinese middle-school students. Medicine (Baltimore). 2018 Jan;97(4):e9716. doi: 10.1097/MD.0000000000009716. https://journals.lww.com/md-journal/fulltext/2018/01260/Chronic_fatigue_syndrome_in_Chinese_middle_school.37.aspx (Full article)

Incidence of myalgic encephalomyelitis/chronic fatigue syndrome in a large prospective cohort of U.S. nurses

Abstract:

Background: The incidence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the rates of both under-diagnosis and over-diagnosis, and the nature of the onset of the condition have not been assessed in large studies of health professionals.

Purpose: To determine the cumulative incidence of ME/CFS in a large population of health professionals, to examine the nature of the onset of the illness, and to estimate the frequency of both over-diagnosis and under-diagnosis of ME/CFS.

Methods: We sent an email questionnaire to participants in the Nurses’ Health Study II (NHS II), a large prospective cohort of female nurses. Forty-two thousand three hundred and ninety-four women completed the questionnaire, which included the 1994 Centers for Disease Control and Prevention (CDC) criteria for ME/CFS.

Results: One-hundred and two women (240 per 100,000 surveyed) developed an illness that met criteria for ME/CFS between 1989 and 2009. The onset of ME/CFS was gradual in 40.6%, sudden (following flu-like illness or other precipitating events) in 18.8%, followed emotional or physical trauma in 32.3%, and was uncertain in the rest. Under-diagnosis was common: only 15 (15%) of the women who met criteria for ME/CFS reported having been diagnosed. Over-diagnosis also was common: four times as many subjects had been diagnosed with ME/CFS by community doctors as actually met criteria. The distribution of symptoms was not different in comparing cases with a sudden onset to those with a gradual onset.

Conclusions: In this large cohort of female nurses, we found a low cumulative incidence of ME/CFS. Over-diagnosis and under-diagnosis were high, even in this medically sophisticated population.

Source: Natalia Palacios, Kathryn C. Fitzgerald, Anthony L. Komaroff & Alberto Ascherio. Incidence of myalgic encephalomyelitis/chronic fatigue syndrome in a large prospective cohort of U.S. nurses .Fatigue: Biomedicine, Health & Behavior. Pages 1-8 Received 08 Mar 2017, Accepted 24 Apr 2017, Published online: 18 May 2017. http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1323576

Issues in Estimating Rates of Pediatric Chronic Fatigue Syndrome and Myalgic Encephalomyelitis in a Community-based Sample

Abstract:

There is a need to examine the prevalence of pediatric chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME) in the general community, as well as the relative frequency of CFS and ME among various groups (e.g., different age groups, genders, racial/ethnic groups, and socioeconomic strata) and to compare these individuals with community controls.

In the present study, we describe an ongoing NIH-funded study, which uses a multiple-stage design, beginning with a brief screening for CFS- and ME-like symptomatology, followed by a more rigorous medical and psychiatric diagnostic evaluation to determine the prevalence of pediatric CFS and ME status in the general community. We provide two case studies showing the types of data we are collecting, and how the data are being used to inform diagnostic decisions.

 

Source: Jason LA, Katz BZ, Mears C, Jantke R, Brown A, Sunnquist M, O’Connor K. Issues in Estimating Rates of Pediatric Chronic Fatigue Syndrome and Myalgic Encephalomyelitis in a Community-based Sample. Avicenna J Neuropsychophysiol. 2015 Nov;2(4). pii: e37281. doi: 10.17795/ajnpp-37281. Epub 2015 Nov 21. https://www.ncbi.nlm.nih.gov/pubmed/28261672

 

Methods of applying the 1994 case definition of chronic fatigue syndrome – impact on classification and observed illness characteristics

Abstract:

BACKGROUND: Multiple case definitions are in use to identify chronic fatigue syndrome (CFS). Even when using the same definition, methods used to apply definitional criteria may affect results. The Centers for Disease Control and Prevention (CDC) conducted two population-based studies estimating CFS prevalence using the 1994 case definition; one relied on direct questions for criteria of fatigue, functional impairment and symptoms (1997 Wichita; Method 1), and the other used subscale score thresholds of standardized questionnaires for criteria (2004 Georgia; Method 2). Compared to previous reports the 2004 CFS prevalence estimate was higher, raising questions about whether changes in the method of operationalizing affected this and illness characteristics.

METHODS: The follow-up of the Georgia cohort allowed direct comparison of both methods of applying the 1994 case definition. Of 1961 participants (53 % of eligible) who completed the detailed telephone interview, 919 (47 %) were eligible for and 751 (81 %) underwent clinical evaluation including medical/psychiatric evaluations. Data from the 499 individuals with complete data and without exclusionary conditions was available for this analysis.

RESULTS: A total of 86 participants were classified as CFS by one or both methods; 44 cases identified by both methods, 15 only identified by Method 1, and 27 only identified by Method 2 (Kappa 0.63; 95 % confidence interval [CI]: 0.53, 0.73 and concordance 91.59 %). The CFS group identified by both methods were more fatigued, had worse functioning, and more symptoms than those identified by only one method. Moderate to severe depression was noted in only one individual who was classified as CFS by both methods. When comparing the CFS groups identified by only one method, those only identified by Method 2 were either similar to or more severely affected in fatigue, function, and symptoms than those only identified by Method 1.

CONCLUSIONS: The two methods demonstrated substantial concordance. While Method 2 classified more participants as CFS, there was no indication that they were less severely ill or more depressed. The classification differences do not fully explain the prevalence increase noted in the 2004 Georgia study. Use of standardized instruments for the major CFS domains provides advantages for disease stratification and comparing CFS patients to other illnesses.

 

Source: Unger ER, Lin JM, Tian H, Gurbaxani BM, Boneva RS, Jones JF. Methods of applying the 1994 case definition of chronic fatigue syndrome – impact on classification and observed illness characteristics. Popul Health Metr. 2016 Mar 12;14:5. doi: 10.1186/s12963-016-0077-1. eCollection 2016. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4788915/ (Full article)