INTRODUCTION: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex illness. No diagnostic tests exist; illness evaluation relies on medical history, physical exam, and laboratory tests. While more is known about ME/CFS in adults, it can affect children and adolescents as a chronic condition. METHODS: We implemented an ME/CFS pediatric educational activity (diagnosis, management, and communication) with medical, physician assistant, and nursing students at one university and with medical students at a second university. Pretests, two videos and slides, and posttests were completed in approximately 40 minutes. Evaluation included quantitative and qualitative measures for knowledge, attitudes, beliefs, confidence, and clinical information about ME/CFS. RESULTS: The first group included 31 students who reported low familiarity and clinical exposure to ME/CFS. At posttest, 25 students (81%) recognized ME/CFS as a medical condition compared to seven (23%) at pretest. Using 0-5 scales, mean pretest-to-posttest ability to diagnose increased from 1.0 to 3.5, and confidence to communicate increased from 1.4 to 3.9. The second group, including 26 students pretest and 19 posttest, also reported low familiarity and clinical exposure The posttest showed increased self-rated ability to diagnose (pretest M: 0.6, posttest M: 3.3) and confidence to communicate (pretest M: 1.4, posttest M: 3.7). Qualitative feedback for this group showed understanding of pediatric ME/CFS symptoms, management, and communication. DISCUSSION: This educational activity increased knowledge of ME/CFS as self-reported ability to make a diagnosis and increased confidence to communicate about pediatric ME/CFS. Participating students showed changes in attitudes towards ME/CFS as a medical condition.

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, debilitating illness affecting millions of people worldwide. Patients with ME/CFS often feel misunderstood and report facing barriers to healthcare utilization. Objective: We report on a Voice of the Patient (VOP) series that used tenets from photovoice and hermeneutic phenomenology methods. The approach prioritized respecting and engaging patients as they share individual experiences of living with ME/CFS. Methods: We developed a 5-step process that could be replicated for interviewing patients in their own words. The process prioritized respecting patients while developing, documenting, and sharing individual accounts of living with ME/CFS. The standardized process for gathering each VOP story enabled individuals to share and participate on their own terms. Results: Over four years, eight VOP stories were completed and posted on CDC's ME/CFS website. The stories received over 196,000 page views. Each story was completed in approximately six months. Participants expressed gratitude for the opportunity to share experiences and were appreciative of the process that involved them in the development of stories. Conclusions: Qualitative methods guided the process for participants taking a central role in sharing stories, which in turn may help educate about patient experiences with ME/CFS. Standardization of steps enabled consistency and transparency. Building flexibility into the process allowed interviewing a range of people with ME/CFS (i.e. bed bound to working) and enabled patients to give narratives in their voice. This process may help to share experiences of people with other chronic diseases or infection associated chronic conditions. © 2024 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

BACKGROUND: Chronic overlapping pain conditions (COPCs), pain-related conditions that frequently occur together, may occur in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and could impact illness severity. This study aimed to identify comorbid COPCs in patients with ME/CFS and evaluate their impact on illness severity. METHODS: We used data from 923 participants in the Multi-Site Clinical Assessment of ME/CFS study, conducted in seven U.S. specialty clinics between 2012 and 2020, who completed the baseline assessment (595 ME/CFS and 328 healthy controls (HC)). COPCs included chronic low back pain (cLBP), chronic migraine/headache (cMHA), fibromyalgia (FM), interstitial cystitis/irritable bladder (IC/IB), irritable bowel syndrome (IBS), temporomandibular disorder (TMD). Illness severity was assessed through questionnaires measuring symptoms and functioning. Multivariate analysis of variance and analysis of covariance models were used for analyses. Log-binomial regression analyses were used to compute prevalence of COPCs and prevalence ratios (PR) between groups with 95% confidence intervals. Both unadjusted and adjusted results with age and sex are presented. RESULTS: 76% of participants with ME/CFS had at least one COPCs compared to 17.4% of HC. Among ME/CFS participants, cMHA was most prevalent (48.1%), followed by FM (45.0%), cLBP (33.1%), and IBS (31.6%). All individual COPCs, except TMD, were significantly more frequent in females than males. The unadjusted PR (ME/CFS compared to HC) was highest for FM [147.74 (95% confidence interval (CI) = 20.83-1047.75], followed by cLBP [39.45 (12.73-122.27)], and IC/IB [13.78 (1.88-101.24)]. The significance and order did not change after age and sex adjustment. The COPC comorbidities of cLBP and FM each had a significant impact on most health measures, particularly in pain attributes (Cohen's d effect size 0.8 or larger). While the impact of COPC comorbidities on non-pain attributes and quality of life measures was less pronounced than that on pain, statistically significant differences between ME/CFS participants with and without COPCs were still evident. CONCLUSIONS: More than 75% of ME/CFS participants had one or more COPCs. Multiple COPCs further exacerbated illness severity, especially among females with ME/CFS. Assessment and management of COPCs may help improve the health and quality of life for patients with ME/CFS.

Purpose: To identify methods used by local health departments (LHDs) for reaching providers and the public with information about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Methods: During 2009-2012, we conducted LHD outreach in three stages: 1) materials needs assessment with LHDs in 18 states-85% of 90 targeted LHDs; 2) dissemination to LHDs in 15 states-distributed 67,850 copies of ME/CFS printed materials to 121 LHDs; and 3) follow-up calls with LHDs 6 months after dissemination - 75% of 118 LHDs. The follow-up interview included 18 questions about ME/CFS material use, perception, and knowledge. Results: Ninety-three percent of LHDs had no ME/CFS program or materials. ME/CFS was not rated a public health priority, yet 90% were interested in receiving ME/CFS materials. Of 89 LHDs completing the follow-up interview, 50% were in rural areas, 74% had heard about ME/CFS, and 80% had used the CDC-provided ME/CFS materials. LHDs incorporated these ME/CFS materials into existing programs and dissemination formats (e.g. kiosks and printed materials were preferred). Past use of provided materials did not impact LHDs' plan to use materials in the future. Regardless of prior ME/CFS awareness, LHDs rated ME/CFS as an important health issue. Conclusions: This paper highlights criteria to consider when developing outreach methods for LHDs including materials and dissemination. We learned materials should be concise and easily transportable to facilitate use in the community. Materials and outreach methods might require tailoring to LHDs as competing health priorities was the most common reason given by LHDs for not using ME/CFS materials.

Chronic fatigue syndrome (CFS) is a complex and serious illness that is often misunderstood. Experts have noted that the terminology "chronic fatigue syndrome" can trivialize this illness and stigmatize persons who experience its symptoms. The name was coined by a group of clinicians convened by CDC in the late 1980s to develop a research case definition for the illness, which, at the time, was called chronic Epstein-Barr virus syndrome. The name CFS was suggested because of the characteristic persistent fatigue experienced by all those affected and the evidence that acute or reactivated Epstein-Barr virus infection was not associated with many cases. However, the fatigue in this illness is striking and quite distinct from the common fatigue everyone experiences. A variety of other names have been used, including myalgic encephalomyelitis (ME), ME/CFS, chronic fatigue immune dysfunction, and most recently, systemic exertion intolerance disease. The lack of agreement about nomenclature need not be an impediment for advancing critically needed research and education. The term ME/CFS will be used in this article.

The Centers for Disease Control and Prevention (CDC), Division of High-Consequence Pathogens and Pathology, Chronic Viral Diseases Branch houses CDC's chronic fatigue syndrome (CFS) research and education program. The program's provider education and outreach initiative has conducted research and implemented activities to educate healthcare professionals about CFS diagnosis and management, including evaluating knowledge, attitudes, and beliefs among US providers [1], assessing best methods for CFS continuing medical education (CME) [2], and developing a train-the-trainer program [3]. In 2012, meetings with stakeholders and evaluations of existing outreach efforts informed the program's decision to target medical students and residents as a way to influence CFS education at the beginning of the medical education process. This report describes the background and process for developing a CFS education curriculum using standardized patients and plans to disseminate the curriculum using MedEd Portal. | CFS is a complex illness characterized by disabling fatigue and accompanying symptoms of prolonged post-exertional malaise, unrefreshing sleep, impaired concentration and short-term memory, muscle and joint pain, headache, sore throat, and tender lymph nodes [4]. Patients with CFS report barriers to healthcare utilization, which may delay diagnosis and treatment [5]. In part, delayed diagnosis and treatment reflects a lack of knowledge by providers who may recognize CFS but have difficulty with patient management.

BACKGROUND: Chronic fatigue syndrome (CFS) is a debilitating chronic illness affecting at least 4 million people in the United States. Understanding its cost improves decisions regarding resource allocation that may be directed towards treatment and cure, and guides the evaluation of clinical and community interventions designed to reduce the burden of disease. METHODS: This research estimated direct and indirect costs of CFS and the impact on educational attainment using a population-based, case-control study between September 2004 and July 2005, Georgia, USA. Participants completed a clinical evaluation to confirm CFS, identify other illnesses, and report on socioeconomic factors. We estimated the effect of CFS on direct medical costs (inpatient hospitalizations, provider visits, prescription medication spending, other medical supplies and services) and loss in productivity (employment and earnings) with a stratified sample (n = 500) from metropolitan, urban, and rural Georgia. We adjusted medical costs and earnings for confounders (age, sex, race/ethnicity, education, and geographic strata) using econometric models and weighted estimates to reflect response-rate adjusted sampling rates. RESULTS: Individuals with CFS had mean annual direct medical costs of $5,683. After adjusting for confounding factors, CFS accounted for $3,286 of these costs (p < 0.01), which were driven by increased provider visits and prescription medication use. Nearly one-quarter of these expenses were paid directly out-of pocket by those with CFS. Individuals with CFS reported mean annual household income of $23,076. After adjustment, CFS accounted for $8,554 annually in lost household earnings (p < 0.01). Lower educational attainment accounted for 19% of the reduction in earnings associated with CFS. CONCLUSIONS: Study results indicate that chronic fatigue syndrome may lead to substantial increases in healthcare costs and decreases in individual earnings. Studies have estimated up to 2.5% of non-elderly adults may suffer from CFS. In Georgia, a state with roughly 5.5 million people age 18-59, illness could account for $452 million in total healthcare expenditures and $1.2 billion of lost productivity.

BACKGROUND: The Internet is increasingly utilized by researchers, health care providers, and the public to seek medical information. The Internet also provides a powerful tool for public health messaging. Understanding the needs of the intended audience and how they use websites is critical for website developers to provide better services to the intended users. OBJECTIVE: The aim of the study was to examine the utilization of the chronic fatigue syndrome (CFS) website at the Centers for Disease Control and Prevention (CDC). We evaluated (1) CFS website utilization, (2) outcomes of a CDC CFS public awareness campaign, and (3) user behavior related to public awareness campaign materials and CFS continuing medical education courses. METHODS: To describe and evaluate Web utilization, we collected Web usage data over an 18-month period and extracted page views, visits, referring domains, and geographic locations. We used page views as the primary measure for the CFS awareness outreach effort. We utilized market basket analysis and Markov chain model techniques to describe user behavior related to utilization of campaign materials and continuing medical education courses. RESULTS: The CDC CFS website received 3,647,736 views from more than 50 countries over the 18-month period and was the 33rd most popular CDC website. States with formal CFS programs had higher visiting density, such as Washington, DC; Georgia; and New Jersey. Most visits (71%) were from Web search engines, with 16% from non-search-engine sites and 12% from visitors who had bookmarked the site. The public awareness campaign was associated with a sharp increase and subsequent quick drop in Web traffic. Following the campaign, user interest shifted from information targeting consumer basic knowledge to information for health care professionals. The market basket analysis showed that visitors preferred the 60-second radio clip public service announcement over the 30-second one. Markov chain model results revealed that most visitors took the online continuing education courses in sequential order and were less likely to drop out after they reached the Introduction pages of the courses. CONCLUSIONS: The utilization of the CFS website reflects a high level of interest in the illness by visitors to the site. The high utilization shows the website to be an important online resource for people seeking basic information about CFS and for those looking for professional health care and research information. Public health programs should consider analytic methods to further public health by understanding the characteristics of those seeking information and by evaluating the outcomes of public health campaigns. The website was an effective means to provide health information about CFS and serves as an important public health tool for community outreach.

BACKGROUND: Chronic fatigue syndrome (CFS) affects at least 4 million people in the United States, yet only 16% of people with CFS have received a diagnosis or medical care for their illness. Educating health care professionals about the diagnosis and management of CFS may help to reduce population morbidity associated with CFS. METHODS: This report presents findings over a 5-year period from May 2000 to June 2006 during which we developed and implemented a health care professional educational program. The objective of the program was to distribute CFS continuing education materials to providers at professional conferences, offer online continuing education credits in different formats (e.g., print, video, and online), and evaluate the number of accreditation certificates awarded. RESULTS: We found that smaller conference size (OR = 80.17; 95% CI 8.80, 730.25), CFS illness related target audiences (OR = 36.0; 95% CI 2.94, 436.34), and conferences in which CFS research was highlighted (OR = 4.15; 95% CI 1.16, 14.83) significantly contributed to higher dissemination levels, as measured by visit rates to the education booth. While print and online courses were equally requested for continuing education credit opportunities, the online course resulted in 84% of the overall award certificates, compared to 14% for the print course. This remained consistent across all provider occupations: physicians, nurses, physician assistants, and allied health professionals. CONCLUSION: These findings suggest that educational programs promoting materials at conferences may increase dissemination efforts by targeting audiences, examining conference characteristics, and promoting online continuing education forums.