Understanding Patterns of Fatigue in Health and Disease

Fatigue is a common symptom and can be the most distressing symptom of a range of medical conditions. This Ecological Momentary Assessment study will investigate lived experiences of fatigue in detail in individuals with myeloma, long COVID, heart failure, and in healthy controls without fatigue.Participants will wear ECG patches and wrist-worn sensors that measure heart rate variability, activity levels, posture, and other parameters. They will self-rate their levels of fatigue four times daily and on-demand (when fatigue levels are noticeably good or troublesome). They will participate in an end of study interview and will have an optional feedback session with a researcher to make sense of the data they have provided.

Inclusion Criteria:For all groups, participants will be included if they are willing to participate in intermittent ecological momentary assessments of fatigue, to wear an ECG patch, to provide questionnaire responses at baseline, and the end of the study, and to participate in an end of study interview.Inclusion Criteria for Group A, individuals with myelomaA confirmed diagnosis of myelomaHas experienced fatigue that is perceived by the participant to be worse than "normal tiredness" and that they associate with myeloma or treatment for myelomaInclusion Criteria for Group B, heart failureA formal diagnosis of heart failureAll stages of heart failure and all aetiologies and with no specific ejection fraction cut-offHas experienced fatigue that is perceived by the participant to be worse than "normal tiredness" and that they associate with their cardiac disease or its treatmentInclusion Criteria for Group C, long COVIDExperiencing fatigue that is perceived by the participant to be worse than "normal tiredness", with or without other physical or psychological symptoms that developed during or after an infection consistent with COVID-19The fatigue (plus or minus any other symptoms) has continued for greater or equal to 12 weeks, and is not explained by an alternative diagnosisInclusion criteria for Group D, control group• Individuals aged 18 years or over without the disease conditions specified in Groups A to CExclusion Criteria:Exclusion Criteria Applying to all participants:Difficulty communicating in EnglishAdults lacking capacity to consentUnder 18 years of ageDeclines to participateUnder investigation for or starting treatment for an endocrine, metabolic, or thyroid condition where the participant has not been established on a stable therapeutic dose of a licensed therapy for that conditionA confirmed diagnosis of sleep apnoea or narcolepsyHADs depression and anxiety score at baseline greater than 8 on the depression questions, which might indicate untreated or undertreated depressionShift work that involves overnight working between the hours of 9pm and 9amWe will not exclude patient participants in groups A to C based on the type of prescribed medications that they are taking. Instead, this will be carefully documented.For Group A, myelomaUncontrolled hypercalcaemiaCurrent or previous diagnosis of heart failure or long COVIDAn active primary cancer diagnosis other than myeloma Group B Heart FailureA current or previous diagnosis of myeloma or long COVIDActive cancer Group C, long COVIDA current or previous diagnosis of myeloma or heart failureActive cancer Group D, Control groupPresence of myeloma or another active cancer, heart failure, or long COVIDOne or more chronic medical conditions which are unstable, poorly controlled, AND perceived by the individual to be causing fatiguePersistent or severe fatigue symptoms that are perceived by the individual to be worse than "normal tiredness"Taking sedating medications to manage anxiety or insomnia including but not limited to benzodiazepines or "Z" drugs, zopiclone, zolpidem, and others in this British National Formulary Class.