The UK ME/CFS Biobank was launched in August 2011 following extensive consultation with professionals and patient representatives. The bioresource aims to enhance research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), related to pathophysiology, biomarkers and therapeutic approaches. The cohort includes 18–60 year olds, encompassing 284 clinically-confirmed ME/CFS cases, 60 neurologist-diagnosed multiple sclerosis (MS) cases, and 135 healthy individuals. The Biobank contains blood samples, aliquoted into serum, plasma, peripheral blood mononuclear cells (PBMC), red blood cells/granulocyte pellet, whole blood, and RNA (totalling 29,863 aliquots). Extensive dataset (700 clinical and socio-demographic variables/participant) enables comprehensive phenotyping. Potential reuse is conditional to ethical approval.

BackgroundPeople with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) continue to struggle to have their condition recognised as disabling in the face of public and professional prejudice and discrimination.ObjectiveThe aim of this study was to compare the functional status and well-being of people with well-characterised ME/CFS with people with multiple sclerosis (PWMS), as well as healthy controls (HCs).MethodsIn this cross-sectional study, we used data collected as part of the UK ME/CFS Biobank to compare actual participant scores from the Medical Outcomes Survey Short Form-36 v2™ (SF-36v2™) between groups, as a proxy for impact of disability, and from a bespoke questionnaire seeking data on employment and income.ResultsPeople with ME/CFS scored significantly lower than PWMS or HCs in almost all SF-36v2™ areas. Prominent were lower scores for people with ME/CFS in the Physical Component Summary and Role Physical and Social Function domains, while the smallest differences were seen in the Mental Health domain. Responses to the bespoke questionnaire indicated that people with ME/CFS in this study work fewer hours and have lower incomes compared with people in the other two groups.ConclusionsUsing SF-36v2™ scores as a proxy, people with ME/CFS were measurably more disabled than PWMS or HCs in this study population. Furthermore, employment and income data are consistent with loss of functional status. These findings should encourage the health community to recognise the disabling effects of ME/CFS, to advocate for the needs of people with ME/CFS, and to investigate strategies to address the cost of the disease to both individuals and society.Electronic supplementary materialThe online version of this article (10.1007/s41669-018-0071-6) contains supplementary material, which is available to authorized users.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been a controversial diagnosis, resulting in tensions between patients and professionals providing them with care. A major constraint limiting progress has been the lack of a ‘gold standard’ for diagnosis; with a number of imperfect clinical and research criteria used, each defining different, though overlapping, groups of people with ME or CFS. We review basic epidemiological concepts to illustrate how the use of more specific and restrictive case definitions could improve research validity and drive progress in the field by reducing selection bias caused by diagnostic misclassification.

The coronavirus disease 2019 (COVID-19) pandemic has changed almost every aspect of our lives. Young adults are vulnerable to pandemic-related adverse mental health outcomes, but little is known about the impact on adolescents. We examined factors associated with perceived changes in mood and anxiety among male youth in urban and Appalachian Ohio. Methods: In June 2020, participants in an ongoing male youth cohort study were invited to participate in an online survey that included questions about changes in mood, anxiety, closeness to friends and family, and the major impacts of the pandemic. Weighted log-binomial regression models were used to assess the risk of worsened mood and increased anxiety. Chi-square tests were used to examine the association between perceived changes in mood and anxiety and perceived changes in closeness to friends and family and open-ended responses to a question about COVID-19's impact on participants. Results: Perceived worsened mood and increased anxiety during the pandemic were associated with higher household socioeconomic status, older age, feeling less close to friends and family, and reporting that COVID-19 negatively affected mental health. A perceived increase in anxiety was also associated with a history of symptoms of depression or anxiety. Conclusions: Specific subgroups of male youth may be at heightened risk of worsening mental health during the COVID-19 pandemic. Interventions should target vulnerable adolescents and seek to increase closeness to social contacts. Such efforts could involve novel programs that allow youth to stay connected to friends, which might mitigate the negative impact on mental health.

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