Background: Myalgic encephalomyelitis/chronic fatigue syndrome is characterized by persistent and disabling fatigue, exercise intolerance, cognitive difficulty, and musculoskeletal/joint pain. Post-exertional malaise is a worsening of these symptoms after a physical or mental exertion and is considered a central feature of the illness. Scant observations in the available literature provide qualitative assessments of post-exertional malaise in patients with myalgic encephalomyelitis/chronic fatigue syndrome. To enhance our understanding, a series of outpatient focus groups were convened. Methods: Nine focus groups totaling 43 patients who reported being diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome were held between November 2016 and August 2019. Focus groups queried post-exertional malaise in daily life and participants' retrospective memory of post-exertional malaise that followed an exercise provocation with a cardiopulmonary exercise test. Data analysis followed the grounded theory method to systematically code and categorize the data to find meaningful patterns. A qualitative software package was used to move text into categories during data coding. Results: A wide range of symptoms were attributed to exertion both in daily lives and following cardiopulmonary exercise testing. While three core symptoms emerged (exhaustion, cognitive difficulties, and neuromuscular complaints), participants' descriptions were notable for their unique individual variations. Of 18 participants who responded to questions centered around symptoms following a cardiopulmonary exercise test, 17 reported that symptoms started within 24 h and peaked in severity within 72 h following the cardiopulmonary exercise test. Patients described post-exertional malaise as interfering with their ability to lead a "normal" life. Conclusion: The experience of post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome varies greatly between individuals and leads to a diminished quality of life. myalgic encephalomyelitis/chronic fatigue syndrome patients describe post-exertional malaise as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to fully or partially recover. Given the extensive variability in patients, further research identifying subtypes of post-exertional malaise could lead to better targeted therapeutic options.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterized by various disabling symptoms including exercise intolerance and is diagnosed in the absence of a specific cause, making its clinical management challenging. A better understanding of the molecular mechanism underlying this apparent bioenergetic deficiency state may reveal insights for developing targeted treatment strategies. We report that overexpression of
Fibromyalgia (FM) in rheumatoid arthritis (RA) can cause consternation because symptoms are seen to be out of proportion to physician and laboratory assessments, and composite RA activity scores such as the 28 joint Disease Activity Score, Clinical Disease Activity Index, and Routine Assessment of Patient Index Data 3 (RAPID-3) can yield apparently "wrong" results. We explored the effect of polysymptomatic distress (PSD), a measure of fibromyalgianess and a quantity derived from the American College of Rheumatology 2010 FM diagnostic criteria, to explain the relationship of patient to physician variables.We obtained PSD scores on 300 RA patients prior to ordinary clinical care, and assessed the associations of PSD with tender and swollen joints, physician global estimate of RA activity, pain, Health Assessment Questionnaire score, and composite RA activity measures during routine clinic assessments.PSD scores greater than the sample mean (8.8) were associated with increased patient symptoms regardless of the presence or absence of FM, while scores below the mean were associated with better patient outcomes. PSD scores predicted all patient outcomes and less strongly predicted physician outcomes. The discrepancy between patient and physician measures was greatest at low levels of physician-estimated disease activity.PSD rather than FM diagnosis more usefully identifies and predicts disproportionate responses. Just as there are patients who lean disproportionately toward greater severity, there are also patients who disproportionately report milder symptoms. Composite measures used to assess RA are flawed, as they confound RA inflammation and patient distress, and more consideration should be given to disaggregated assessments. PSD also appears to be influenced weakly by RA disease activity.
Dyscognition refers to the complaint that a person9s ability to perform thinking tasks is impaired. This complaint is colloquially known as "brain fog". It is a major symptom of a variety of disorders and associated with considerable work and social disability for those experiencing it. However, attempts to demonstrate objective cognitive impairment in persons reporting "brain fog" have not been straightforward. In this lecture, the symptom of cognitive dysfunction will be described from the patient9s point of view, using fibromyalgia as a disease model. The cognitive tests used to determine objective alterations in cognitive ability will be reviewed, the amount of objective impairment demonstrated in fibromyalgia will be placed into clinical context, and the "disconnect" between what the experience of dyscognition is and the cognitive content measured by modern testing will be discussed. The poor relationship between the magnitude of subjective dyscognition and objective cognitive performance will be examined, including evidence gleaned from neurological imaging studies. In conclusion, the experience of cognitive fog is not well captured by current testing paradigms. Subjective complaint is a poor predictor of objective cognitive performance. The neuronal mechanisms responsible for the experience of cognitive fog may be separate from those required to perform cognitive tasks.
Abstract Introduction Whole-room indirect calorimetry is the gold standard to measure metabolism during sleep. However, it is unknown whether sleep in a room calorimeter is reflective of a person’s natural sleep pattern or whether it suffers from limitations common to other in-laboratory assessments, such as the “first night effect”. To address this knowledge gap, we compared actigraphy-assessed sleep parameters measured in a room calorimeter with those measured at home to examine how research environments may alter natural sleep quality and patterns. Methods Ten healthy individuals (4 females; 41.5 ± 14.5 years old; 25.4 ± 4.2kg/m2) participated in the study (NCT02669212). Participants had no major sleep disturbances (Pittsburgh Sleep Quality Index; PSQI < 5) with minimal anxiety (0-7), assessed using the Beck Anxiety Index. The in-laboratory portion of the study was conducted in a whole-room indirect calorimeter with controlled diets and ambient temperatures. The out-patient, at home study was conducted for seven consecutive nights, further divided into weekday and weekend sleep for analysis. Sleep was measured with an ActiGraph wGT3X-BT accelerometer on the non-dominant wrist throughout the study. Results The in-laboratory total sleep time (TST) was 399.7 ± 85.7min, comparable to weekend sleep at home, which was 399.8 ± 57.6min (p=0.998). In-laboratory TST was slightly longer than weekday sleep at home (359.7 ± 69.3min), but was not significantly different (p=0.34). Sleep efficiency in all three conditions was similar for baseline (90.6 ± 6.3%), weekday (91.4 ± 4.5%), and weekend sleep at home (91.1 ± 4.9%). These results suggest that despite being in the laboratory, sleep in healthy individuals was not significantly affected by sleeping in the calorimeter. As expected, seven consecutive nights of sleep at home revealed a tendency for shorter total sleep time during the week (359.7 ± 69.3min) compared to the weekend (399.8 ± 57.6min) (p=0.095), suggesting the presence of social jetlag and circadian misalignment throughout the week. Conclusion The present study showed that actigraphy-measured sleep was not affected by sleeping in the whole-room indirect calorimeter in healthy individuals. Further studies would be crucial to address whether this trend holds for other study populations. Support (if any)
