Tag: patient experience

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)

Impact of the COVID-19 Pandemic and the 2021 National Institute for Health and Care Excellence Guidelines on Public Perspectives Toward Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Thematic and Sentiment Analysis on Twitter (Rebranded as X)

Abstract:

Background: Myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), is a complex illness that typically presents with disabling fatigue and cognitive and functional impairment. The etiology and management of ME/CFS remain contentious and patients often describe their experiences through social media.

Objective: We explored public discourse on Twitter (rebranded as X) to understand the concerns and priorities of individuals living with ME/CFS, with a focus on (1) the COVID-19 pandemic and (2) publication of the 2021 UK National Institute for Health and Care Excellence (NICE) guidelines on the diagnosis and management of ME/CFS.

Methods: We used the Twitter application programming interface to collect tweets related to ME/CFS posted between January 1, 2010, and January 30, 2024. Tweets were sorted into 3 chronological periods (pre-COVID-19 pandemic, post-COVID-19 pandemic, and post-UK 2021 NICE Guidelines publication). A Robustly Optimized Bidirectional Embedding Representations from Transformers Pretraining Approach (RoBERTa) language processing model was used to categorize the sentiment of tweets as positive, negative, or neutral. We identified tweets that mentioned COVID-19, the UK NICE guidelines, and key themes identified through latent Dirichlet allocation (ie, fibromyalgia, research, and treatment). We sampled 1000 random tweets from each theme to identify subthemes and representative quotes.

Results: We retrieved 906,404 tweets, of which 427,824 (47.2%) were neutral, 369,371 (40.75%) were negative, and 109,209 (12.05%) were positive. Over time, both the proportion of negative and positive tweets increased, and the proportion of neutral tweets decreased (P<.001 for all changes). Tweets mentioning fibromyalgia acknowledged similarities with ME/CFS, stigmatization associated with both disorders, and lack of effective treatments. Treatment-related tweets often described frustration with ME/CFS labeled as mental illness, dismissal of concerns by health care providers, and the need to seek out “good physicians” who viewed ME/CFS as a physical disorder. Tweets on research typically praised studies of biomarkers and biomedical therapies, called for greater investment in biomedical research, and expressed frustration with studies suggesting a biopsychosocial etiology for ME/CFS or supporting management with psychotherapy or graduated activity. Tweets about the UK NICE guidelines expressed frustration with the 2007 version that recommended cognitive behavioral therapy and graded exercise therapy, and a prolonged campaign by advocacy organizations to influence subsequent versions. Tweets showed high acceptance of the 2021 UK NICE guidelines, which were seen to validate ME/CFS as a biomedical disease and recommended against graded exercise therapy. Tweets about COVID-19 often noted overlaps between post-COVID-19 condition and ME/CFS, including claims of a common biological pathway, and advised there was no cure for either condition.

Conclusions: Our findings suggest research is needed to inform how best to support patients’ engagement with evidence-based care. Furthermore, while patient involvement with ME/CFS research is critical, unmanaged intellectual conflicts of interest may threaten the trustworthiness of research efforts.

Source: Khakban I, Jain S, Gallab J, Dharmaraj B, Zhou F, Lokker C, Abdelkader W, Zeraatkar D, Busse JW. Impact of the COVID-19 Pandemic and the 2021 National Institute for Health and Care Excellence Guidelines on Public Perspectives Toward Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Thematic and Sentiment Analysis on Twitter (Rebranded as X). J Med Internet Res. 2025 May 21;27:e65087. doi: 10.2196/65087. PMID: 40397934. https://www.jmir.org/2025/1/e65087 (Full text)

“I would love to say it’s the fatigue but honestly it’s not”: Into Adulthood with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Abstract:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a debilitating and poorly understood condition which interferes with adolescents’ typical development. This study aimed to explore the experience of transitioning into adulthood from the perspective of adolescents and young adults (16-25yo) with CFS/ME.

Thirteen young people recruited through a community allied health clinic in Victoria, Australia, participated in semi-structured interviews. Interviews were analysed using reflexive thematic analysis and produced the following themes: Independence: a different path or an inaccessible adulthood? Identity: who could I have been? Isolation and disconnection: being with people but not being like them.

Our analysis of these themes suggests several avenues to support young people with CFS/ME and their families. Mental health professionals may have a specific role in helping foster assertiveness and confidence, assisting identity exploration and understanding, and supporting families in helping their adolescent to continue to develop psychologically.

Source: Tenhave, A., Bognar, R., & Sidis, A. (2025). “I would love to say it’s the fatigue but honestly it’s not”: Into Adulthood with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Psychology, Health & Medicine, 1–19. https://doi.org/10.1080/13548506.2025.2495891 https://www.tandfonline.com/doi/full/10.1080/13548506.2025.2495891 (Full text)

Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, debilitating illness affecting millions of people worldwide. Patients with ME/CFS often feel misunderstood and report facing barriers to healthcare utilization.

Objective: We report on a Voice of the Patient (VOP) series that used tenets from photovoice and hermeneutic phenomenology methods. The approach prioritized respecting and engaging patients as they share individual experiences of living with ME/CFS.

Methods: We developed a 5-step process that could be replicated for interviewing patients in their own words. The process prioritized respecting patients while developing, documenting, and sharing individual accounts of living with ME/CFS. The standardized process for gathering each VOP story enabled individuals to share and participate on their own terms.

Results: Over four years, eight VOP stories were completed and posted on CDC’s ME/CFS website. The stories received over 196,000 page views. Each story was completed in approximately six months. Participants expressed gratitude for the opportunity to share experiences and were appreciative of the process that involved them in the development of stories.

Conclusions: Qualitative methods guided the process for participants taking a central role in sharing stories, which in turn may help educate about patient experiences with ME/CFS. Standardization of steps enabled consistency and transparency. Building flexibility into the process allowed interviewing a range of people with ME/CFS (i.e. bed bound to working) and enabled patients to give narratives in their voice. This process may help to share experiences of people with other chronic diseases or infection associated chronic conditions.

Source: Brimmer DJ, Lin JS, Unger ER. Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words. Fatigue. 2025;13(2):1-11. doi: 10.1080/21641846.2024.2444826. PMID: 40123856; PMCID: PMC11926923. https://pmc.ncbi.nlm.nih.gov/articles/PMC11926923/ (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)

ME patient experiences: Sampling bias limits the external validity of findings

Abstract:

In a recent paper in Journal of Health Psychology, Kielland et al. present a study with the first objective of documenting how helpful or unhelpful persons with ME perceive common services and interventions. The authors recruited participants by respondent driven sampling, a method that aims to produce estimates that correct for sampling bias. However, we argue that the main assumptions of the method are not met, and that the results of the study thus cannot be generalised to the intended target population.

Source: Selvakumar J, Wyller VBB. ME patient experiences: Sampling bias limits the external validity of findings. J Health Psychol. 2025 Jan 21:13591053241310320. doi: 10.1177/13591053241310320. Epub ahead of print. PMID: 39838600. https://pubmed.ncbi.nlm.nih.gov/39838600/

Re-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/chronic fatigue syndrome and ‘medically unexplained symptoms’

Abstract:

Following years of debate over the effectiveness of cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), public health bodies in the UK and beyond have determined that no psychotherapy is clinically proven for this patient group. In the field of ME/CFS and the wider arena of ‘medically unexplained symptoms’ (MUS), patient survey data and qualitative research capturing patient experiences and psychotherapist attitudes suggest that therapeutic practice may sometimes fall short of required ethical standards. This raises questions about how psychotherapists can safely support, as opposed to treat, people with these debilitating conditions.

We consider four ethical principles that feature throughout psychotherapists’ codes of practice, those of respect, competence, responsibility and integrity, and discuss examples of good and poor practice in this arena as evinced by recent empirical literature.

Following this, we offer a variety of suggestions to help strengthen ethical psychotherapy practice with patients with ME/CFS and other MUS. In terms of practitioner education, we recommend greater emphasis on humility, reflexivity and disability-affirming practices, exploration of personal as well professional ethics, and integration of patient expertise-by-experience, accompanied with the latest evidence, into foundational and ongoing training.

In terms of ongoing practice, we suggest consideration of formalised patient-focused feedback systems and greater transparency vis-à-vis patient access to clinical notes. Finally, we underline the importance of elevating patients from mere subjects to co-producers of psychotherapy research.

Source: Hunt J, Blease C. Re-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/chronic fatigue syndrome and ‘medically unexplained symptoms’. J Med Ethics. 2024 Dec 31:jme-2023-109627. doi: 10.1136/jme-2023-109627. Epub ahead of print. PMID: 39740979. https://jme.bmj.com/content/early/2024/12/31/jme-2023-109627 (Full text)

Patient-Reported Treatment Outcomes in ME/CFS and Long COVID

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID are persistent multi-system illnesses affecting many patients. With no known effective FDA-approved treatments for either condition, patient-reported outcomes of treatments are invaluable for guiding management strategies in patient care and generating new avenues for research. Here, we present the results of an ME/CFS and Long COVID treatment survey with responses from 3,925 patients.

We assessed the experiences of these patients with more than 150 treatments, as well as their demographics, symptoms, and comorbidities. Patients with each condition who participated in the study shared similar symptom profiles, including all the core symptoms of ME/CFS, e.g., 89.7% of ME/CFS and 79.4% of Long COVID reported post-exertional malaise (PEM). Treatments with the greatest perceived benefits were identified, which had varied effects on different core symptoms.

In addition, treatment responses were significantly correlated (R² = 0.68) between the two patient groups. Patient subgroups with distinct profiles of symptoms and comorbidities showed varied responses to treatments, e.g., a POTS-dominant cluster benefiting from autonomic modulators and a cognitive-dysfunction cluster from CNS stimulants.

This study underscores the symptomatic and therapeutic similarities between ME/CFS and Long COVID and highlights the commonalities and nuanced complexities of infection-associated chronic diseases and related conditions. Insights from patient-reported experiences, in the absence of approved treatments, provide urgently needed real-world evidence for targeted therapies in patient care and for developing future clinical trials.

Source: Martha Eckey, Peng Li, Braxton Morrison, Ronald W Davis, Wenzhong Xiao. Patient-Reported Treatment Outcomes in ME/CFS and Long COVID. medRxiv 2024.11.27.24317656; doi: https://doi.org/10.1101/2024.11.27.24317656 https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v1.full-text (Full text)

Exploring the Experience of Healthcare-Related Epistemic Injustice among People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

Abstract:

Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a chronic, disabling yet clinically “contested” condition, previously theorised through a lens of epistemic injustice. Phenomena conceptually close to epistemic injustice, including stigma, are known to have deleterious consequences on a person’s health and life-world. Yet, no known primary studies have explored how people with ME/CFS experience healthcare through a lens of epistemic injustice, whilst a dearth of research explicitly exploring healthcare-related injustice from a patient perspective has been noted. This qualitative study seeks to address this gap.

Semi-structured interviews and interpretative phenomenological analysis (IPA) were used to explore the experiences of five people with ME/CFS in the UK, vis-à-vis healthcare-related epistemic injustice. One superordinate theme is presented, “Being de-centred in patient-centred care,” alongside two sub-themes: “Struggling for epistemic-existential validation” and “Negotiating socio-epistemic hierarchies, politics and ‘power’.”

Findings suggest that healthcare-related epistemic injustice may differentially impact according to the patient’s social positionality (here, notably gender), and that a potential pathway of existential harm operates through threats to identity and personhood. Findings also indicate that cultural and political factors may further epistemic injustice in healthcare. Finally, epistemic injustice impacting as a chronic stressor cannot be ruled out and is worthy of further research.

The experience of healthcare-related epistemic injustice can carry far-reaching yet varied consequences for patients. Future research should consider drawing upon more socio-demographically diverse samples and an intersectional approach is recommended. Further exploration of structural drivers of epistemic injustice may highlight a need for politically and socio-culturally cognisant clinical approaches.

Source: Hunt, J., Runacres, J., Herron, D., & Sheffield, D. (2024). Exploring the Experience of Healthcare-Related Epistemic Injustice among People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. The Qualitative Report, 29(4), 1125-1148. https://doi.org/10.46743/2160-3715/2024.6519 https://nsuworks.nova.edu/tqr/vol29/iss4/15/ (Full text available as PDF file)