Barbara J. Stussman

Background A central feature of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is post-exertional malaise (PEM), which is an acute worsening of symptoms after a physical, emotional and/or mental exertion. Dynamic measures of PEM have historically included scaled questionnaires, which have not been validated in ME/CFS. To enhance our understanding of PEM and how best to measure it, we conducted semistructured qualitative interviews (QIs) at the same intervals as visual analogue scale (VAS) measures after a cardiopulmonary exercise test (CPET). Methods Ten ME/CFS and nine healthy volunteers participated in a CPET. For each volunteer, PEM symptom VAS (12 symptoms) and semistructured QIs were administered at six timepoints over 72 hours before and after a single CPET. QI data were used to plot the severity of PEM at each time point and identify the self-described most bothersome symptom for each ME/CFS volunteer. Performance of QI and VAS data was compared with each other using Spearman correlations. Results Each ME/CFS volunteer had a unique PEM experience, with differences noted in the onset, severity, trajectory over time and most bothersome symptom. No healthy volunteers experienced PEM. QI and VAS fatigue data corresponded well an hour prior to exercise (pre-CPET, r=0.7) but poorly at peak PEM (r=0.28) and with the change from pre-CPET to peak (r=0.20). When the most bothersome symptom identified from QIs was used, these correlations improved (r=0.0.77, 0.42. and 0.54, respectively) and reduced the observed VAS scale ceiling effects. Conclusion In this exploratory study, QIs were able to capture changes in PEM severity and symptom quality over time, even when VAS scales failed to do so. Measurement of PEM can be improved by using a quantitative–qualitative mixed model approach.

Background A central feature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is post exertional malaise (PEM), which is an acute worsening of symptoms after a physical, emotional and/or mental exertion. PEM is also a feature of Long COVID. Dynamic measures of PEM have historically included scaled questionnaires which have not been validated in ME/CFS. To enhance our understanding of PEM and how best to measure it, we conducted semi-structured qualitative interviews (QIs) at the same intervals as Visual Analog Scale (VAS) measures after a Cardiopulmonary Exercise Test (CPET). Methods Ten ME/CFS and nine healthy volunteers participated in a CPET. For each participant, PEM symptom VAS (7 symptoms) and semi-structured QIs were administered at six timepoints over 72 hours before and after a single CPET. QI data were used to plot the severity of PEM at each time point and identify the self-described most bothersome symptom for each patient. QI data were used to determine the symptom trajectory and peak of PEM. Performance of QI and VAS data were compared to each other using Spearman correlations. Results QIs documented that each ME/CFS volunteer had a unique PEM experience, with differences noted in the onset, severity, trajectory over time, and most bothersome symptom. No healthy volunteers experienced PEM. Scaled QI data were able to identify PEM peaks and trajectories, even when VAS scales were unable to do so due to known ceiling and floor effects. QI and VAS fatigue data corresponded well prior to exercise (baseline, r=0.7) but poorly at peak PEM (r=0.28) and with the change from baseline to peak (r=0.20). When the most bothersome symptom identified from QIs was used, these correlations improved (r=.0.77, 0.42. and 0.54 respectively) and reduced the observed VAS scale ceiling and floor effects. Conclusion QIs were able to capture changes in PEM severity and symptom quality over time in all the ME/CFS volunteers, even when VAS scales failed to do so. Information collected from QIs also improved the performance of VAS. Measurement of PEM can be improved by using a quantitative-qualitative mixed model approach. Disclaimer This research/work/investigator was supported (in part) by the Division of Intramural Research of the National Institutes of Health, NINDS. The content is solely the responsibility of the author(s) and does not necessarily represent the official views of the National Institutes of Health.

Objective: To examine the reasons why office-based physicians do or do not recommend four selected complementary health approaches to their patients in the context of the Andersen Behavioral Model. Design: Descriptive estimates of physician-level data from the 2012 National Ambulatory Medical Care Survey (NAMCS) Physician Induction Interview, a nationally representative survey of office-based physicians (N = 5622, weighted response rate = 59.7%). Setting/Location: The United States. Outcome measures: Reasons for the recommendation or lack thereof to patients for: herbs and other non-vitamin supplements, chiropractic/osteopathic manipulation, acupuncture, and mind–body therapies (including meditation, guided imagery, and progressive relaxation). Differences by physician sex and medical specialty were described. Results: For each of the four complementary health approaches, more than half of the physicians who made recommendations indicated that they were influenced by scientific evidence in peer-reviewed journals (ranging from 52.0% for chiropractic/osteopathic manipulation [95% confidence interval, CI = 47.6–56.3] to 71.3% for herbs and other non-vitamin supplements [95% CI = 66.9–75.4]). More than 60% of all physicians recommended each of the four complementary health approaches because of patient requests. A higher percentage of female physicians reported evidence in peer-reviewed journals as a rationale for recommending herbs and non-vitamin supplements or chiropractic/osteopathic manipulation when compared with male physicians (herbs and non-vitamin supplements: 78.8% [95% CI = 72.4–84.3] vs. 66.6% [95% CI = 60.8–72.2]; chiropractic/osteopathic manipulation: 62.3% [95% CI = 54.7–69.4] vs. 47.5% [95% CI = 42.3–52.7]). For each of the four complementary health approaches, a lack of perceived benefit was the most frequently reported reason by both sexes for not recommending. Lack of information sources was reported more often by female versus male physicians as a reason to not recommend herbs and non-vitamin supplements (31.4% [95% CI = 26.8–36.3] vs. 23.4% [95% CI = 21.0–25.9]). Conclusions: There are limited nationally representative data on the reasons as to why office-based physicians decide to recommend complementary health approaches to patients. Developing a more nuanced understanding of influencing factors in physicians' decision making regarding complementary health approaches may better inform researchers and educators, and aid physicians in making evidence-based recommendations for patients.

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.

Objective: There are no nationally representative studies using a probability sample that have been published examining whether physicians recommend complementary health approaches (CHAs) to their patients, as previous research has focused only on selected medical specialties or a particular U.S. region. This article fills a void in the current literature for robust data on recommendations for CHAs by office-based physicians in the United States. Design: Descriptive statistics and multivariable regression analyses of physician-level data were from the 2012 Physician Induction Interview of the National Ambulatory Medical Care Survey (NAMCS PII), a nationally representative survey of office-based physicians. Weighted response rate among eligible physicians sampled for the 2012 NAMCS PII was 59.7%. Setting/Location: United States. Outcome measures: Recommendations by physicians to their patients for any CHA, and individual CHAs: massage therapy, herbs/nonvitamin supplements, chiropractic/osteopathic manipulation, yoga, acupuncture, and mind-body therapies. Differences in recommendations by physician demographic characteristics were identified. Results: Massage therapy was the most commonly recommended CHA (30.4%), followed by chiropractic/osteopathic manipulation (27.1%), herbs/nonvitamin supplements (26.5%), yoga (25.6%), and acupuncture (22.4%). The most commonly recommended CHAs by general/family practice physicians were chiropractic/osteopathic manipulation (54.0%) and massage therapy (52.6%). Of all U.S. physicians, 53.1% recommended at least one CHA to patients during the previous 12 months. Multivariable analyses found physician's sex, race, specialty, and U.S. region to be significant predictors of CHA recommendations. Female physicians were more likely than male physicians to recommend massage therapy (adjusted odds ratio [aOR] = 1.76, 95% confidence interval [CI] = 1.40-2.20), herbs/nonvitamin supplements (aOR = 1.85, 95% CI = 1.46-2.35), yoga (aOR = 2.16, 95% CI = 1.70-2.75), acupuncture (aOR = 1.65, 95% CI = 1.27-2.13), and mind-body therapies (aOR = 2.63, 95% CI = 2.02-3.41) to patients. Psychiatrists (aOR = 0.13, 95% CI = 0.07-0.23), OB/GYNs (aOR = 0.38, 95% CI = 0.24-0.60), and pediatricians (aOR = 0.26, 95% CI = 0.18-0.38) were all less likely to recommend chiropractic/osteopathic manipulation than general and family practitioners. Conclusions: Overall, more than half of office-based physicians recommended at least one CHA to their patients. Female physicians recommended every individual CHA at a higher rate than male physicians except for chiropractic and osteopathic manipulation. These findings may enable consumers, physicians, and medical schools to better understand potential differences in use of CHAs with patients.

Background and aims: Despite the enormous body of literature spanning more than 50 years describing results of pain experiments, very few have used qualitative methods to explore subjects’ thoughts while scoring experimental painful stimuli, and none in the available literature have used qualitative interviews to do so. The current study examined how participants in experimental pain research delineate pain ratings to better understand the unique influences of the experimental setting on pain scores. An additional aim was to highlight how individuals with fibromyalgia and healthy volunteers are differently influenced by characteristics of the experimental setting. Methods: This was an inductive, qualitative study in which individual, semi-structured interviews were performed with 31 fibromyalgia patients and 44 healthy volunteers. Participants had taken part in a pain experiment during which a thermode was used to induce painful heat stimuli on two skin areas. There were two primary interview questions analyzed for this report: (1) “Thinking back to when you were getting the heat pain on your leg, what were you thinking about when deciding on your pain score?” and (2) Participants who said that it was difficult to decide on a pain score were asked to, “Describe what made it difficult to choose a number.” Thematic analysis was used to generate conceptual categories from textual data and find common themes. Results: Three notable differences were found between fibromyalgia patients and healthy volunteers: (1) using current daily pain as a benchmark was seen more in patients, (2) wanting to appear strong in front of the study investigators was more common in healthy volunteers, and (3) becoming mentally fatigued from rating many stimuli was more common for fibromyalgia patients. Thoughts while scoring pain included: (1) comparing with previous or current pain, (2) self-monitoring of one’s ability to endure the pain, (3) focusing on the physical aspects of the pain, (4) knowing the experimental setting is safe, (5) focusing on the pain scale as an anchor, and (6) desire to appear strong. Additionally, five difficulties in scoring experimental pain were identified: (1) falling asleep, (2) mentally fatigued, (3) feeling as though they were guessing, (4) having to make a quick decision, and (5) difficulty in being consistent. Conclusions: This study provides insights into the thoughts of participants in experimental pain research studies. Participants were distracted and influenced by the experimental setting and some factors differed for fibromyalgia patients versus healthy volunteers. Implications: Understanding the ways in which the experimental setting influences pain ratings may help pain researchers better design and interpret studies. Researchers can use these findings to mitigate difficulties for participants in experimental research to add to its validity.

Data from the 2002 and 2012 National Health Interview Surveys. Between 2002 and 2012, the use of acupuncture, chiropractic, and massage therapy increased among adults who did not have health insurance coverage for these complementary health approaches. No change in use was observed among those who had coverage for these approaches. While 60% of adults who saw a practitioner for chiropractic had at least some health insurance coverage for this approach, far fewer adults seeing a practitioner for acupuncture (25%) or massage therapy (15%) had coverage for these approaches. Adults who saw practitioners for acupuncture and chiropractic-and had health insurance coverage for these approaches-were more likely to have partial than complete coverage.

This report presents national estimates of selected wellness-related reasons for the use of natural product supplements, yoga, and spinal manipulation among U.S. adults in 2012. Self-reported perceived health outcomes were also examined. Data from 34,252 adults aged 18 and over collected as part of the 2012 National Health Interview Survey were analyzed for this report. In particular, whether adults who used selected complementary health approaches did so to treat a specific health condition or for any of five wellness-related reasons was examined, as well as whether these adults perceived that this use led to any of nine health-related outcomes. Sampling weights were used to produce national estimates that are representative of the civilian noninstitutionalized U.S. adults population. Users of natural product supplements and yoga were more likely to have reported using the approach for a wellness reason than for treatment of a specific health condition, whereas more spinal manipulation users reported using it for treatment rather than for wellness. The most common wellness-related reason reported by user of each of the three approaches was for "general wellness or disease prevention." The majority of users of all three health approaches reported that they perceived this use improved their overall health and made them feel better. Yoga users perceived higher rates of all of the self-reported wellness-related health outcomes than users of natural product supplements or spinal manipulation.

The 2002, 2007, and 2012 complementary medicine questionnaires fielded on the National Health Interview Survey provide the most comprehensive data on complementary medicine available for the United States. They filled the void for large-scale, nationally representative, publicly available datasets on the out-of-pocket costs, prevalence, and reasons for use of complementary medicine in the U.S. Despite their wide use, this is the first article describing the multi-faceted and largely qualitative processes undertaken to develop the surveys. We hope this in-depth description enables policy makers and researchers to better judge the content validity and utility of the questionnaires and their resultant publications.