Category: Medical Care

Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study

Abstract:

Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other poorly understood post-acute infection syndromes (PAIS) can present with unexplained symptoms or conditions that may be misunderstood by healthcare providers, causing delays in diagnosis and care. To address these issues, the Centers for Disease Control and Prevention (CDC) funded the Long COVID and Fatiguing Illness Recovery Program (LC&FIRP), initiated as a pilot project to assess whether providing tele-mentoring and other online education for primary care providers could help them improve the quality of life and support the recovery of their patients with these conditions.

The LC&FIRP multi-disciplinary team-based care approach is built on the Extension for Community Healthcare Outcomes (ECHO) learning model, which is an evidence-based virtual learning framework developed by the University of New Mexico and designed to disseminate and implement best practices, especially in under-resourced areas. A distinctive feature of LC&FIRP was the inclusion of lived-experience experts. To explore the influence of lived-experience experts on the care patients received, we collected the educational recommendations provided by the lived-experience experts during webinar sessions (January 2022-March 2024) and grouped these by themes.

The major themes that emerged included validation of patients’ illness experience; attitudes and beliefs about Long COVID, ME/CFS, and PAIS; understanding patients’ challenges and communicating with empathy; navigating referrals; recognizing and supporting disability; and supporting self-care. Investigators also interviewed patients of the Family Health Centers of San Diego (FHCSD) about their experiences receiving care from participating primary care providers and employed content analysis methods to code interview transcripts to identify themes among patients’ perspectives. Positive comments from the patients about topics emphasized by the lived-experience experts provided evidence of providers’ uptake and application of the experts’ recommendations and support the value of involving lived-experience experts in medical education to improve health services.

Source: Weaver SS, Carry M, Bertolli J, Godino J, Struminger B, Taren D, Scott JD, Sharp SP, Samaniego J, Bean DR, Issa A, Lin JS, Unger ER, Ramers CB. Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study. Front Health Serv. 2025 Jun 27;5:1562651. doi: 10.3389/frhs.2025.1562651. PMID: 40656206; PMCID: PMC12245761. https://pmc.ncbi.nlm.nih.gov/articles/PMC12245761/ (Full text)

Patient experiences of remote consulting with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia: a qualitative study

Abstract:

Background: Remote and digital consulting in primary care has rapidly expanded since March 2020. It is important to understand patient experiences, particularly for those living with complex long-term conditions, to identify how care can best be delivered, including within the remote space.

Aim: To explore the experiences of people living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and fibromyalgia when consulting remotely in primary care.

Design & setting: Semi-structured interviews with patients living with CFS/ME and fibromyalgia in general practice in England.

Method: Semi-structured interviews were carried out with 13 participants. The interviews were transcribed and analysed thematically according to a Foucauldian theoretical framework.

Results: All participants highlighted needing to feel believed by clinicians. Many reported difficulties with telephone and online consulting owing to the lack of physical communication. Positive outcomes were reported when there was a good relationship with a clinician. Continuity in care and recognising the complexity of these conditions were also considered important.

Conclusion: This study allowed people living with CFS/ME and fibromyalgia to describe their experiences when consulting remotely. Participants highlighted needing to feel listened to and felt they benefited from an ongoing relationship with a clinician although this was difficult to achieve when consulting remotely. Some advantages of remote consulting were reported, particularly when symptoms were troublesome. Flexible access systems, with a range of consultation modalities or preferred clinician(s) availability, could improve healthcare encounters, particularly given the increased use of remote consulting in primary care.

Source: Leach H, Eccles A, Chew-Graham CA, Atherton H. Patient experiences of remote consulting with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia: a qualitative study. BJGP Open. 2025 Apr 24;9(1):BJGPO.2024.0079. doi: 10.3399/BJGPO.2024.0079. PMID: 39191480; PMCID: PMC12137999. https://pmc.ncbi.nlm.nih.gov/articles/PMC12137999/ (Full text)

Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al

Abstract:

The narrative which is presented by Miller et al. as new, has dominated the field of ME/CFS for the last 35 years. It has been tested by numerous studies and has been found to be ineffective and harmful, as concluded by for example NICE in 2021. Additionally, it does not lead to objective improvement and it has a negative instead of a positive effect on work and disability status.

What has happened over the last 35 years is that severely ill patients have been ridiculed, gaslit and ignored by the medical profession. These patients have lost hope in the part of the medical profession which has been instrumental in doing and promoting that. They have not lost hope to recover and they are all hoping to get effective pharmacological treatments sooner rather than later as changing their mindset does not lead to recovery. And if it does, then the diagnosis of ME/CFS was simply wrong.

Source: Vink, Mark and Vink-Niese, Friso, Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al. (June 06, 2025). No., Available at SSRN: https://ssrn.com/abstract=5284667 https://papers.ssrn.com/sol3/papers.cfm?abstract_id=5284667 (Full text available as PDF file)

Ignored, dismissed, and minimized: Understanding the harmful consequences of invalidation in health care-A systematic meta-synthesis of qualitative research

Abstract:

The upsurge in the prevalence of contested, ambiguous, and difficult-to-diagnose illnesses presents challenges for clinicians who too often respond by invalidating patients’ symptoms. Although numerous qualitative studies have reported the effects of invalidation on patients’ psychological and behavioral outcomes, this body of research has not been systematically reviewed. Informed by Linehan’s (1993) conceptualization of invalidation, this systematic review elucidated the negative consequences, of symptom invalidation, or the dismissal or minimization of a person’s experiences with illness.

We reviewed 151 qualitative reports representing 11,307 individuals with Ehlers-Danlos syndrome, endometriosis, fibromyalgia syndrome, Gulf War syndrome, irritable bowel syndrome, long COVID, multiple chemical sensitivity, myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, systemic lupus erythematosus, and vulvodynia.

Consistent with Linehan’s theorizing, thematic analysis identified four broad classes of consequences: induced emotional states and beliefs (e.g., shame, suicidality), induced health care emotional states and beliefs (e.g., health care-related anxiety and trauma), induced health care behavior (e.g., health care system avoidance), and diagnostic delay.

Informed by these findings, we developed a novel conceptual model explaining how symptom invalidation leads to these consequences and thereby undermines health outcomes. Future work should explore the proposed conceptual model and identify theoretically informed interventions and policies aimed at preventing symptom invalidation to improve psychological, behavioral, and health outcomes. (PsycInfo Database Record (c) 2025 APA, all rights reserved).

Source: Bontempo AC, Bontempo JM, Duberstein PR. Ignored, dismissed, and minimized: Understanding the harmful consequences of invalidation in health care-A systematic meta-synthesis of qualitative research. Psychol Bull. 2025 Apr;151(4):399-427. doi: 10.1037/bul0000473. PMID: 40310228. https://psycnet.apa.org/fulltext/2026-10154-001.html (Full text)

Awareness and Perception of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Among Pain Specialists: A Questionnaire-Based Study

Abstract:

Background: This study aims to explore the perceptions and clinical approaches of pain management specialists toward myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition characterized by persistent fatigue, widespread pain, unrefreshing sleep, and autonomic dysfunction. Given the challenges in diagnosis and management, pain specialists may play a pivotal role in symptom relief. By identifying variations in evaluation and treatment practices, this study seeks to enhance the recognition of ME/CFS and improve its clinical management within pain medicine.

Material and methods: The questionnaire was distributed in printed form to 250 pain specialists in Turkey. Given the limited number of pain physicians in the country, the study aimed to encompass all actively practicing specialists. The survey included four demographic questions, eight true-false questions, 12 multiple-choice questions, and four rating-scale questions. Data were collected anonymously. Data were analyzed using Statistical Product and Service Solutions (SPSS, version 27.0; IBM SPSS Statistics for Windows, Armonk, NY), with descriptive statistics and chi-square (χ²) tests applied to examine the relationships between awareness levels and attitudinal variables.

Results: In Turkey, 106 pain medicine physicians (42.4%) participated in the study. The average age was 40.6±8.52 years. Among the participants, 39.6% had previously heard of myalgic encephalomyelitis. Physicians were inclined to first ask the question, “Do you think you get enough sleep at night?” when evaluating these patients, with a rate of 63.2%. The majority of participants (65.9%) stated that they “occasionally” or “rarely” considered the relationship between fatigue and orthostatic intolerance. Additionally, 37.7% believed that this disease is a subtype of depression. The statement, “chronic fatigue decreases with intense aerobic exercise,” was agreed upon by 50.9% of participants. This controversial statement was particularly more common among those who were unaware of ME/CFS’s alternative name (p=0.009) and those who did not take dysautonomic disorders into account (p=0.048). When considering an ME/CFS diagnosis, physicians most frequently referred patients to the physical medicine and rehabilitation department (32.1%). Those who preferred not to refer patients to any department (12.3%) tended to find it appropriate for a patient to seek consultation at a pain medicine clinic due to widespread body pain and fatigue (χ2=11.405, p=0.044).

Conclusion: This study is the first questionnaire-based research assessing pain physicians’ awareness and attitudes toward ME/CFS. By highlighting their perspectives on its evaluation and management, our findings may improve recognition and clinical approaches to ME/CFS. Future research should focus on education and standardized guidelines to enhance patient care.

Source: Uygun GG, Gözükızıl ST, Bilen A. Awareness and Perception of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Among Pain Specialists: A Questionnaire-Based Study. Cureus. 2025 Mar 23;17(3):e81030. doi: 10.7759/cureus.81030. PMID: 40264626; PMCID: PMC12013460. https://pmc.ncbi.nlm.nih.gov/articles/PMC12013460/ (Full text)

Under-Served Groups and Myalgic Encephalomyelitis Research Workshop; Multiple Barriers to Effective Healthcare, Research and Public Participation

Abstract:

Public involvement in research and other initiatives for myalgic encephalomyelitis (ME) (also known as chronic fatigue syndrome) has been crucial in raising awareness of the disease and exposing inadequate healthcare and research funding. An online workshop on ME research and under-served groups took place in July 2024, organised by the first author, a person with ME. The workshop illustrated very low prevalence and thus barriers to healthcare as well as limited research in people from under-served groups, who appear doubly disadvantaged by their illness and their socioeconomic and/or ethnic background.

Three particular challenges were suggested to account for these disparities: stigma, lack of knowledge (within the general public, amongst healthcare workers and policy makers) and lack of power, particularly in improving current deficiencies. These challenges appear to be significant factors in preventing increased research funding and healthcare provision for ME generally.

We call on government and funding bodies to provide strategic funding to correct years of systemic under-resourcing. Widespread educational initiatives should alert healthcare workers and the public to the possible presence of ME in people from under-served groups. Research is now urgently needed to understand the barriers to diagnosis and care for people with this illness, particularly for those from under-served groups.

PATIENT OR PUBLIC CONTRIBUTION: The first author, a person with ME, was a patient representative on the government-initiated Research Working Group. As a result, she organised a series of online workshops on ME clinical research, attended by researchers, clinicians, charity representatives and people with ME. She directed the workshops and people with ME actively participated in the discussions. The last workshop examined ME research and under-served groups. The workshop was chaired by the third author and attended by the second author. The first author conceived the article and wrote it in consultation with the second and third authors.

Source: Bolton MJ, Chew-Graham CA, van Marwijk H. Under-Served Groups and Myalgic Encephalomyelitis Research Workshop; Multiple Barriers to Effective Healthcare, Research and Public Participation. Health Expect. 2025 Apr;28(2):e70214. doi: 10.1111/hex.70214. PMID: 40094174; PMCID: PMC11911926. https://pmc.ncbi.nlm.nih.gov/articles/PMC11911926/ (Full text)

Managing Energy, and Shaping Care: Insights from Adults with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Co-Production Workshops

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, debilitating condition characterised by severe fatigue that is not relieved by rest and is often exacerbated by physical or mental activity. A key challenge for individuals with ME/CFS is energy management and to date, the only recommended strategy is “activity pacing.” This approach involves balancing activity and rest to avoid overexertion and minimise the risk of symptom exacerbation, commonly known as “post-exertional malaise”(PEM). A recent systematic review highlighted significant shortcomings in activity pacing interventions for ME/CFS, noting that they lacked rigour, were brief, and did not follow guidelines or integrate recommended technology, limiting their relevance for modern energy management. To address these gaps, the present study aimed to explore ME/CFS patients’ and health practitioners’ perspectives on approaches to energy management, how their understanding of energy management has evolved over time, and their recommendations for future interventions concerning energy management.

Method: Eight individuals with ME/CFS participated in six one-hour long online co-production workshops with two researchers, with the option to provide input through written responses. Additionally, three health practitioners shared their perspectives via email. Thematic analysis of the data identified several key recommendations for improving ME/CFS care.

Results and conclusions: Workshops highlighted the need for early support, healthcare provider training, and public education to combat stigma and misconceptions around ME/CFS. Participants emphasised patient collaboration, research-informed practices, rigorous research, multidisciplinary teams, and the integration of technologies like mHealth, along with a comprehensive approach including sleep, diet, and psychological support for better symptom management and activity pacing.

Source: Thornton EJ, Hayes LD, Goodwin DS, Sculthorpe N, Prior Y, Sanal-Hayes NEM. Managing Energy, and Shaping Care: Insights from Adults with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Co-Production Workshops. Am J Med. 2025 Feb 15:S0002-9343(25)00093-2. doi: 10.1016/j.amjmed.2025.02.008. Epub ahead of print. PMID: 39961545. https://www.amjmed.com/article/S0002-9343(25)00093-2/fulltext (Full text)

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

Abstract:

People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighted, and even dismissed by healthcare professionals. We believe that these adversarial interactions and language are more likely to arise when healthcare professionals are confronting complex chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies.
These problematic conversations between practitioners and patients often involve specific words and phrases—termed the “never-words”—can leave patients in significant emotional distress and negatively impact the clinician–patient relationship and recovery. Seeking to prevent these destructive interactions, we review key literature on best practices for difficult clinical conversations and discuss the application of these practices for people with Long COVID, ME/CFS, dysautonomia, and other complex chronic disorders. We provide recommendations for alternative, preferred phrasing to the never-words, which can enhance therapeutic relationship and chronic illness patient care via compassionate, encouraging, and non-judgmental language.
Source: Smyth NJ, Blitshteyn S. Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders. International Journal of Environmental Research and Public Health. 2025; 22(2):275. https://doi.org/10.3390/ijerph22020275 https://www.mdpi.com/1660-4601/22/2/275 (Full text)

Machine learning and multi-omics in precision medicine for ME/CFS

Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex and multifaceted disorder that defies simplistic characterisation. Traditional approaches to diagnosing and treating ME/CFS have often fallen short due to the condition’s heterogeneity and the lack of validated biomarkers. The growing field of precision medicine offers a promising approach which focuses on the genetic and molecular underpinnings of individual patients.

In this review, we explore how machine learning and multi-omics (genomics, transcriptomics, proteomics, and metabolomics) can transform precision medicine in ME/CFS research and healthcare. We provide an overview on machine learning concepts for analysing large-scale biological data, highlight key advancements in multi-omics biomarker discovery, data quality and integration strategies, while reflecting on ME/CFS case study examples. We also highlight several priorities, including the critical need for applying robust computational tools and collaborative data-sharing initiatives in the endeavour to unravel the biological intricacies of ME/CFS.

Source: Huang K, Lidbury BA, Thomas N, Gooley PR, Armstrong CW. Machine learning and multi-omics in precision medicine for ME/CFS. J Transl Med. 2025 Jan 14;23(1):68. doi: 10.1186/s12967-024-05915-z. PMID: 39810236. Huang K, Lidbury BA, Thomas N, Gooley PR, Armstrong CW. Machine learning and multi-omics in precision medicine for ME/CFS. J Transl Med. 2025 Jan 14;23(1):68. doi: 10.1186/s12967-024-05915-z. PMID: 39810236. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-024-05915-z (Full text)

Patient-Generated Data as Interventions in Doctor-Patient Relationships? Negotiating (Un)Invited Participation in Medical Consultations

Abstract:

Health data generated by apps and devices are increasingly popular and expected to affect various aspects of doctor-patient relationships. No longer confined to medically authorised and certified health technologies, a range of biomedical data-from heart rate to blood pressure or oxygen saturation-are captured and processed by consumer health devices. This article outlines different responses of physicians to patients collecting data with popular consumer devices and considers how the data may challenge or reify medical authority.

Based on semi-structured interviews with doctors and chronically ill patients in Germany from 2021 to 2023, we compare cases from diabetes, sleep disorders, cardiovascular conditions, obesity and ME/CFS and explore when, how and for what reasons different medical specialists consider patient-generated data (PGD) from consumer devices in outpatient settings.

Their response registers vary: whereas some physicians reject PGD that seem to compete with their diagnostic activities, others tolerate the data (collection), whereas still others more readily include them into their diagnostic practices. This suggests nuanced strategies for navigating the demarcation between accepting or rejecting ‘uninvited’ participation through PGD from consumer apps and devices.

Source: Augst AK, Lämmerhirt D, Schubert C. Patient-Generated Data as Interventions in Doctor-Patient Relationships? Negotiating (Un)Invited Participation in Medical Consultations. Sociol Health Illn. 2024 Nov 14. doi: 10.1111/1467-9566.13864. Epub ahead of print. PMID: 39540662. https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13864 (Full text)