Nicholas Fallon

Background: Patients with fibromyalgia syndrome (FMS) often report prolonged diagnostic pathways and inadequate care, prompting reliance on self-management and online health information. This study aimed to quantify the association between specific clinical experiences and the sources and extent of health information-seeking behaviours in people with FMS. Methods: A cross-sectional online survey was completed by adults who self-reported a diagnosis of FMS. Measures assessed symptom severity, diagnostic and treatment experiences, frequency and duration of symptom flares, perceived stigma and caring from healthcare professionals, and engagement with health information sources, including traditional and digital platforms. Associations between clinical experiences and health information-seeking behaviours were examined using non-parametric tests and hierarchical regression analyses. Results: A total of 384 adults completed the survey (75.3% female; median age 41 years). Most participants reported experiencing symptom flares (88.0%), occurring approximately every 2–3 weeks and lasting a median of 3 days. Participants reported significantly more negative than neutral experiences across multiple diagnostic and treatment variables, including diagnostic difficulty and challenges accessing specialist care. Most respondents (84.1%) actively sought health information, most commonly from healthcare professionals, websites, and online network platforms. Nearly half reported difficulties accessing satisfactory health information. Greater diagnostic difficulty, difficulty finding a specialist, and higher perceived caring from healthcare professionals independently predicted engagement with a wider range of health information sources. Conclusions: Patients with FMS frequently report dissatisfaction with their clinical experiences. Positive and negative diagnostic and treatment experiences are associated with the extent of health information-seeking among people with FMS. These findings highlight the importance of clinical experiences in shaping how patients seek health information and underscore the role of supportive clinical relationships in fostering informed and collaborative care.

ObjectiveFibromyalgia is a chronic primary pain condition characterised by widespread pain, sleep disturbance, fatigue and cognitive impairment. The diagnostic criteria, aetiology, and legitimacy of symptoms remains contested, leading to poor patient experiences and perceived stigma. This review aimed to synthesise experiences of adults living with fibromyalgia in the United Kingdom, and outline areas of patient care improvement in the National Health Service.MethodsA qualitative evidence synthesis was conducted following PRISMA and ENTREQ guidance. Five electronic databases were systematically searched. Data extraction and quality appraisal using the Critical Appraisal Skills Programme were undertaken independently by two reviewers. Data were analysed using inductive thematic synthesis.ResultsN = 28 studies were included in the thematic synthesis and led to four themes: (1) The constant labour of productivity and self-management in an unreliable body, (2) navigating complex and changing relationships while managing internal turmoil, (3) finding legitimacy and agency within healthcare and welfare systems, and (4) mourning the past, making sense of the present, and negotiating an uncertain future. Combined, these themes show that receiving a diagnosis required persistent work against medical dismissal, but even when diagnosed, their pain was rarely effectively management amid disjointed care. The stigma against the diagnosis was both internal for patients, and perceived from external social, healthcare, and welfare systems.ConclusionsThese findings highlight the need for pain services that provide psychotherapy and education around fibromyalgia, improved integration of specialised pain care with local healthcare services, and wider training of healthcare clinicians in fibromyalgia diagnosis.

In line with the critical role of human olfaction in motivated behavior, positively valenced odors have been shown to boost hedonic perception of visual stimuli, especially facial expressions, compared to unpleasant smells. However, it remains unclear whether pleasant fragrances, which vary in character and subjective affective profile, differentially impact different categories of visual stimuli. We also postulate that individual differences in emotional responses to odors modulate their subsequent effect on hedonic evaluations of images. The current study investigated how (relative to a clean air control) 4 pleasant odors (vanilla, rose, lavender, and lemon) influenced hedonic ratings of different categories of visual images (faces, landscapes, and objects), with each category comprising images of neutral and positive valence. Forty participants (aged 18 to 35) rated the pleasantness of each image during each odor condition presented using a computer-controlled olfactometer. Participants also reported their emotional response to each fragrance on 7 dimensions (happiness, disgust, relaxation, thirstiness, sensuality, energy, and nostalgia) using the Liverpool Emotion and Odor Scale (LEOS), self-report questionnaire. Pleasant odors significantly affected image pleasantness ratings, but the effects of specific fragrances differed by image category. Individual differences in emotional experiences elicited by each fragrance were shown to modulate the impact of odors on hedonic evaluations, and these effects varies across the different image categories. The findings offer new insights into the differential effects of pleasant odors on hedonic evaluations of visual stimuli and the role of individual affective processing in cross-modal olfactory-visual integration.

Psychological and relational processes, including empathy, are increasingly recognised as central to effective pain care. Fibromyalgia Syndrome (FMS), a complex chronic pain condition, poses significant challenges for both patients and healthcare professionals (HCPs) across medical settings. Patients with FMS often report lack of empathy from HCPs, negatively affecting healthcare experiences. Whilst empathic therapeutic relationships are linked to improved satisfaction and reduced pain in FMS, how empathy is conceptualised in practice remains underexplored. Using Q-methodology, 20 HCPs and 20 patients with FMS ranked 40 statements on clinical empathy based on agreement/disagreement. Four factors were identified, explaining 51% of the variance. Factor 1, ‘ Empathy is about truly connecting—the dominant healthcare professional view’ , included 75% of the HCPs and emphasised emotional aspects and partnership. The remaining factors captured heterogeneous patient perspectives: Factor 2, ‘Empathy cannot be taught; it is something that you have’ , focussed on behavioural, outcome-oriented aspects; Factor 3, ‘Empathy requires communication that goes both ways’, prioritised behavioural and cognitive aspects; and Factor 4, ‘Lack of empathy makes patients feel abandoned—the dominant patient view’, reflected a strong importance of emotional validation and personalised care. These four factors were further mapped onto broader dimensions of affective engagement and reciprocity. HCPs and patients view empathy differently, highlighting the need for interventions grounded in shared understanding. Addressing these perspectives may facilitate better empathic interactions and improve psychologically informed healthcare for FMS.

Fibromyalgia syndrome (FMS) is a chronic primary pain condition characterised by widespread pain and hypersensitivities, and symptoms of fatigue, poor sleep and impaired cognition. The current studies were prompted by clinical observations made at a tertiary pain centre, where patients with severe FMS frequently reported having biological children on the autism spectrum. Using multimodal data collection techniques, including a clinical service evaluation (N = 589), an exploratory phenotyping study (N= 59), an online patient survey (N= 710), and a clinical prospective investigation (N = 66), the present study aimed to investigate links that may point to a connection between maternal FMS and autistic offspring. For the clinical and online data collection, the studies used comparator patients with complex regional pain syndrome (CRPS) and a mix of “other chronic pain conditions”. Maternal factors of interest, including a familial history of neurodivergence and psychological variables, were considered in the analysis. Maternal FMS was consistently found to be associated with an increased likelihood of children with an autism diagnosis, even after accounting for established maternal factors associated with autism. Meeting and advocating for the support needs of autistic children may require enhanced care, which can lead to greater demands on patients already suffering from FMS or CRPS. The causes for the observed association between maternal FMS and autistic children require further investigation.

Large-scale skin microbiome studies are often restricted due to the need for participants to visit a research centre to have their skin swabbed by a trained individual. If samples taken by participants at home returned high-quality data, similar to that generated from samples taken by trained experts under controlled conditions, it would provide the potential for studies to have larger cohorts, include participants from multiple locations and facilitate longitudinal sample collection. Here, we describe the development of a novel unsupervised skin microbiome sample collection method and compare the data quality with that of supervised, in-lab sample collection. We enrolled 57 participants to collect skin swabs from their axillae, forearms, cheeks and scalps. Initially, samples were collected in our research centre under strict supervision by a trained expert. Participants then collected swabs from the same body sites 24 h later, unsupervised, at home, which they returned to the research centre within 3–5 days. All samples then underwent bacterial DNA extraction and 16S rRNA gene sequencing. Yield of extracted bacterial DNA was different depending on body site, with the dry swabs from the forearm producing the lowest amount. There were no significant differences in alpha and beta-diversities between supervised and unsupervised sampling methods, regardless of body site. Taxonomic analysis of bacterial genera also did not differ for axilla, cheek or scalp. Our data suggest that self-sampling skin microbiome methods can produce data that are comparable to samples collected under the supervision of a trained expert in lab settings. These findings should encourage the scalability of future research and allow for greater representative population diversity in genomic and microbiome research.