Tag: medical care

Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: a Prospective, Open-label, Non-randomized Controlled Intervention Study

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling condition with limited treatment options and inadequate healthcare structures worldwide. We assessed the effectiveness of an integrated care model specifically adapted for ME/CFS.

Methods: In this prospective, open-label, non-randomized controlled intervention study conducted at Charité Fatigue Center we enrolled patients with ME/CFS between 2022 and 2023. Participants in the intervention group received multidisciplinary specialist assessment, comprehensive clinical management, and tailored inpatient rehabilitation, while the control group received a single outpatient consultation and a medical report for their primary physician. Primary outcome was change in physical functioning, measured using the SF-36 physical functioning subscale, at 12 months. Secondary outcomes included disability, symptom severity, quality of life, handgrip strength, and steps per day.

Results: 89 intervention and 93 control participants were included in the per-protocol analysis. At 12 months, no statistically significant difference in SF-36 physical functioning scores was observed between groups. Secondary outcomes also showed no substantial between-group differences. Inpatient rehabilitation was completed by all participants who initiated it. Most participants reported that rehabilitation was helpful for learning disease management strategies, and for coping better with daily life. Post-rehabilitation Bell Disability Scale scores decreased in 42/94 (45%) and increased in only 13/94 (14%) patients.

Conclusions: The integrated multidisciplinary care model was feasible and associated with high retention but did not improve physical functioning or key secondary outcomes at 12 months. Current rehabilitative and management strategies may be insufficient to alter disease trajectory, underscoring the need for more effective, disease-modifying therapeutic interventions.

Source: Kedor, Claudia and Mödl, Lukas and Rust, Rebekka and Stein, Elisa and Kim, Laura and Tietz, Pauline and Bellmann-Strobl, Judith and Eltity, Mailam and Paul, Friedemann and Veauthier, Christian and Doehner, Wolfram and Jauert, Nadja and Wolfarth, Bernd and Thouet, Thomas and Mastmeier-Porst, Johanna and Reißhauer, Anett and Hoffmann, Isabelle and Liebl, Max and Adamaszek, Michael and Erdmann-Reusch, Bianca and Stoklossa, Cindy and Anja, Hagemann and Steinle, Elena and Kegel, Luisa and Grittner, Ulrike and Konietschke, Frank and Scheibenbogen, Carmen and Wittke, Kirsten, Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: a Prospective, Open-label, Non-randomized Controlled Intervention Study. Available at SSRN: https://ssrn.com/abstract=6989698 https://papers.ssrn.com/sol3/papers.cfm?abstract_id=6989698&__cf_chl_f_tk=7KzyUFhcvWmJjL_HlP_OsqHNIh3rn3CacEzMoUzDPdw-1782909851-1.0.1.1-WQCZO6Ow4FTiOFui2MEk7O.lj2CmcnK2p5GAH9F9UTo (Full text available as PDF file)

A Perspective on Observation as Intervention in Chronic Diagnostic Complexity

Abstract:

This patient perspective article advances observation as an intentional, rigorous form of clinical care rather than a passive absence of intervention. The recommendations arise from the lived experience of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), informed by clinical training as a mobile equine veterinarian.

Over a nine-year diagnostic course, early clinical curiosity gave way to prolonged skepticism in the context of normal examinations and laboratory findings, ultimately shifting responsibility for daily functioning and symptom interpretation onto the patient. Across repeated encounters, subtle but consistent indicators of impaired energy regulation and exertional intolerance were present yet remained clinically unintegrated. When viewed longitudinally, these findings revealed a coherent physiological pattern that was not apparent at any single time point.

Modern medical training emphasizes action. However complex, relapsing, and poorly understood conditions often demand sustained clinical attention before diagnostic clarity emerges. In the absence of immediate abnormalities, discomfort with uncertainty may prompt premature intervention or disengagement, eroding trust and obscuring evolving signals.

Structured observation offers an alternative. As a clinical strategy, it preserves diagnostic curiosity, strengthens the physician-patient relationship, and allows for the observation of physiology without confounding influences. Such observation can yield meaningful insight and guide precise, compassionate care.

Source: Niederman CN. A Perspective on Observation as Intervention in Chronic Diagnostic Complexity. J Patient Exp. 2026 May 11;13:23743735261449971. doi: 10.1177/23743735261449971. PMID: 42137851; PMCID: PMC13168711. https://pmc.ncbi.nlm.nih.gov/articles/PMC13168711/ (Full text)

Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through a Point-of-Care Clinical Algorithm

Abstract:

Despite the increasing prevalence and median severity of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), medical education on the disease is scant, leading to a diagnostic crisis in which the majority of people with ME/CFS are undiagnosed. We created a care process algorithm in AskMayoExpert accessible to all Mayo Clinic medical providers as a source for information on diagnosis and management of ME/CFS.

To evaluate whether the algorithm was associated with improved diagnostic accuracy, we compared concordance before versus after the algorithm was introduced, where concordance was defined as agreement between an appropriately coded referral to Mayo Clinic’s Chronic Fatigue Specialty Clinic and the specialty clinic with an expert diagnosis of ME/CFS.

Referrals to the Chronic Fatigue Specialty Clinic increased overall and were more likely to show concordance between specialist diagnosis and referral after the introduction of the ME/CFS AskMayoExpert algorithm. Particularly in diseases that are prevalent and poorly understood, a point-of-care clinical tool may offer just-in-time opportunities to improve diagnosis and management.

Source: Seltzer J, Grach SL, Eggers SD, Redetzke MM, Mau KJ, Chon TY, Ganesh R. Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through a Point-of-Care Clinical Algorithm. Int J Environ Res Public Health. 2026 Apr 3;23(4):460. doi: 10.3390/ijerph23040460. PMID: 42074399. https://www.mdpi.com/1660-4601/23/4/460 (Full text)

Underuse of Pharmacologic Therapies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Before Specialist Evaluation

Abstract:

Purpose: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multisystem neurologic disease characterized by profound fatigue and decreased functional capacity, postexertional malaise, and unrefreshing sleep, along with cognitive impairment and/or orthostatic intolerance. Its prevalence has risen exponentially with the COVID-19 pandemic. Pharmacologic therapies have been used successfully by ME/CFS specialists but may be underused by the general medical field.

Methods: To assess this potential practice gap, we retrospectively analyzed the records of 571 patients with an ME/CFS diagnosis referred to our ME/CFS specialty clinic in Minnesota during 2018-2022. We ascertained medications that had already been tried at the time of consultation and also ascertained supplement use.

Results: With the exception of medications primarily used for pain and anxiety, use of pharmacotherapy for ME/CFS symptom management as proposed by specialists was limited. Overall, 68.3% of patients had had at least 1 medication potentially prescribed for ME/CFS; the most common were serotonin-norepinephrine reuptake inhibitors, gabapentin, and tricyclic antidepressants. A slightly larger share of patients, 72.2%, reported having taken at least 1 dietary supplement; the most common were vitamin D, vitamin B12 and B complex, and fish oil.

Conclusion: Our findings suggest that potentially helpful medications for ME/CFS are being underprescribed in the general medical field and that patients may resort to supplements to manage symptoms. Better education of clinicians about available treatment options and treatment guides may improve management of this debilitating disease.

Source: Grach SL, Seltzer J, Mueller MR, Aakre CA, Natividad LT, Lawson DK, Ganesh R, Hurt RT. Underuse of Pharmacologic Therapies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Before Specialist Evaluation. Ann Fam Med. 2026 Apr 29:250266. doi: 10.1370/afm.250266. Epub ahead of print. PMID: 42055743. https://www.annfammed.org/content/early/2026/04/24/afm.250266-0 (Full text available as PDF file)

A patient perspective on enduring symptoms – the unmet need

Abstract:

This short paper illustrates the lived experience of individuals with severe enduring symptoms: chronic, often debilitating conditions for which no clear medical explanation currently exists. Drawing on qualitative interviews, the paper highlights the profound suffering, isolation, and lack of medical support experienced by this underserved population. It examines the systemic barriers to care, including stigma, the absence of follow-up services, and the traumatising nature of some healthcare encounters, which can lead to healthcare avoidance even in the face of potentially life-threatening symptoms. It concludes with a call for improved training for clinicians, increased capacity within NHS services, and ring-fenced funding for biomedical research.
Source: Katharine Cheston. A patient perspective on enduring symptoms – the unmet need. Future Healthcare Journal: Volume 12, Issue 4, 2025, 100465. ISSN 2514-6645. https://doi.org/10.1016/j.fhj.2025.100465. https://www.sciencedirect.com/science/article/pii/S2514664525002462 (Full text)

Telehealth as a care solution for homebound people: systematic review and meta-analysis of healthcare utilization, quality of life, and well-being outcomes

Abstract:

Homebound individuals residing in community settings with severe health conditions and disabilities could arguably benefit from telehealth interventions. However, the effectiveness of telehealth compared to in-person care remains underexplored, considering the diversity of these groups. This systematic review and meta-analysis aimed to evaluate the effectiveness of telehealth in reducing healthcare utilization and improving health-related quality of life (HRQOL) and well-being in homebound populations.

Adhering and expanding on a published protocol, we conducted comprehensive search across multiple databases: MEDLINE, Embase, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials (CENTRAL), Scopus, LILACS, and the Web of Science, with no restrictions on language or publication date, and experimental and quasiexperimental studies considered. Eleven independent reviewers were responsible for study selection, and three for data extraction. The methodological quality of the included studies was assessed using JBI checklists. A meta-analysis was then performed using Stata software, which reported standardized mean differences (SMDs) as the effect measure, with the quality of evidence evaluated using the GRADE approach. From an initial screening of 3289 articles, ten studies met our inclusion criteria, with eight suitable for meta-analysis. These studies encompassed data from 2245 participants.

Our findings revealed that telehealth interventions significantly reduced healthcare utilization (SMD: −0.49; 95% CI: −0.76 to −0.22; p < 0.01, GRADE: low certainty), significantly enhanced HRQOL (SMD: 0.18; 95% CI: 0.01 to 0.35; p = 0.04, GRADE: moderate certainty), and significantly improved well-being (SMD: −0.31; 95% CI: −0.47 to −0.15; p < 0.01, GRADE: moderate certainty) compared to in-person care. Thus, telehealth emerges as a viable alternative to conventional care, significantly reducing healthcare utilization and enhancing both HRQOL and well-being for homebound people.

These findings underscore the potential of telehealth to mitigate healthcare disparities and emphasize the need for accessible, equitable telehealth services codeveloped with end users and relevant stakeholders to save resources and maximize health outcomes for vulnerable populations in community settings.

Source: Pinero de Plaza, Maria Alejandra, Gulyani, Aarti, Bulto, Lemma N., Allande-Cussó, Regina, Pearson, Vincent, Lange, Belinda, Marin, Tania, Gebremichael, Lemlem, Brown, Shannon, Dafny, Hila, Sajeev, Shelda, Bulamu, Norma, Beleigoli, Alline, Nesbitt, Katie, McMillan, Penelope, Clark, Robyn, Tieu, Matthew, Kitson, Alison, Champion, Stephanie, Hines, Sonia, Hendriks, Jeroen M., Telehealth as a Care Solution for Homebound People: Systematic Review and Meta-Analysis of Healthcare Utilization, Quality of Life, and Well-Being Outcomes, Health & Social Care in the Community, 2025, 7224151, 32 pages, 2025. https://doi.org/10.1155/hsc/7224151 https://onlinelibrary.wiley.com/doi/full/10.1155/hsc/7224151 (Full text)

Specialised care for severely affected ME/CFS patients

Abstract:

Introduction: A specialised care unit for severely and very severely ill ME/CFS patients opened in 2021. The results from the first 3 years are reported.

Methods: People with ME/CFS who were diagnosed according to the Canadian Consensus Criteria, who are aged 18 or above with severe or very severe ME/CFS according to the UK NICE guidelines, are eligible to stay at Røysumtunet. The study design is a retrospective review of medical records.

Results: Between June 2021 and June 2024, 24 ME/CFS patients, 20 women and 4 men with a confirmed diagnosis of ME, were admitted to the unit for stays of at least 3 months. Seventeen were very severely affected and 7 were severely affected. Ages ranged from 18 to 68 years, with mean (SD) 37.5 (12.8) years. Seven patients showed significant improvement (p < 0.01), and five others showed some improvement. In total 50% improved (p < 0.01). Patients who improved were borderline significantly younger than those who did not, with a mean age of 30.3 (SD 12.6) years compared to 39.8 (SD 11.8) years (p = 0.06). The mean duration of disease was 2.3 (1.3) years for those who improved versus 6.7 (3.9) years for those who did not improve (p < 0.05).

Conclusion: This is the first report of a specialised care unit for the most severely ill ME/CFS patients. Fifty per cent of patients showed significant or partial improvement. The mechanisms behind these improvements are discussed but require further exploration in future studies.

Source: Saugstad, O. D., Sollie, M. G., Torp, H. A., & Storla, D. G. (2025). Specialised care for severely affected ME/CFS patients. Fatigue: Biomedicine, Health &amp; Behavior, 1–13. https://doi.org/10.1080/21641846.2025.2565101 https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2565101 (Full text)

Approach to nursing diagnoses of people with myalgic encephalomyelitis / chronic fatigue syndrome: a qualitative meta-synthesis

Abstract:

Objective: To identify human responses (diagnostic foci) that shape the experience of living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and how they manifest throughout the course of the illness.

Methods: A qualitative meta-synthesis was conducted. Original studies exploring the experience of living with ME/CFS in adults with a confirmed diagnosis, published in English or Spanish between 1994 and June 2024, were included. The literature search was carried out in Medline/Medline In-Process, Embase, CINAHL, PsycINFO, SCI-EXPANDED, SSCI, SciELO, Lilacs, and Cuiden. Data analysis was based on the human responses (diagnostic foci) from the NANDA-I Nursing Diagnoses Classification, 2021–2023, with findings structured according to Fennell’s Four-Phase Model.

Results: A total of 42 articles were selected. Twenty human responses (diagnostic foci) and three classes of the NANDA-I Nursing Diagnoses Classification were identified, interwoven across the different phases of the model. Some responses were present throughout all phases, while others, such as Energy Balance and Health Self-Management, became particularly relevant from Phase 2 onwards. Phases 3 and 4 were characterised by losses and processes of subjective reconstruction, with diagnostic foci such as Sorrow, Spiritual Distress, and Personal Identity being predominant.

Conclusions: The identified human responses (diagnostic foci) highlight how the contested and chronic nature of ME/CFS profoundly shapes the lived experience of those affected. The model derived from this review provides a structured framework for targeted nursing interventions, aligned with the phase each individual is experiencing.

Source: Oter-Quintana, C., Esteban-Hernandez, J., Cuellar-Pompa, L., Gil-Carballo, C., Brito-Brito, P. R., Martín-García, A., … Alameda-Cuesta, A. (2025). Approach to nursing diagnoses of people with myalgic encephalomyelitis / chronic fatigue syndrome: a qualitative meta-synthesis. Fatigue: Biomedicine, Health &amp; Behavior, 1–32. https://doi.org/10.1080/21641846.2025.2522028 https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2522028

Reframing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Biological Basis of Disease and Recommendations for Supporting Patients

Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a worldwide challenge. There are an estimated 17-24 million patients worldwide, with an estimated 60 percent or more who have not been diagnosed. Without a known cure, no specific curative medication, disability lasting years to being life-long, and disagreement among healthcare providers as to how to most appropriately treat these patients, ME/CFS patients are in need of assistance. Appropriate healthcare provider education would increase the percentage of patients diagnosed and treated; however, in-school healthcare provider education is limited.

To address the latter issue, the New Jersey Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association (NJME/CFSA) has developed an independent, incentive-driven, learning program for students of the health professions. NJME/CFSA offers a yearly scholarship program in which applicants write a scholarly paper on an ME/CFS-related topic. The efficacy of the program is demonstrated by the 2024-2025 first place scholarship winner’s essay, which addresses the biological basis of ME/CFS and how the healthcare provider can improve the quality of life of ME/CFS patients.

For the reader, the essay provides an update on what is known regarding the biological underpinnings of ME/CFS, as well as a medical student’s perspective as to how the clinician can provide care and support for ME/CFS patients. The original essay has been slightly modified to demonstrate that ME/CFS is a worldwide problem and for publication.

Source: Agarwal P, Friedman KJ. Reframing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Biological Basis of Disease and Recommendations for Supporting Patients. Healthcare (Basel). 2025 Aug 5;13(15):1917. doi: 10.3390/healthcare13151917. PMID: 40805949. https://www.mdpi.com/2227-9032/13/15/1917 (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)