Healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis: a scoping review

Abstract:

Background: Myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome or ME/CFS) is a debilitating, complex, multi-system illness. Developing a comprehensive understanding of the multiple and interconnected barriers to optimal care will help advance strategies and care models to improve quality of life for people living with ME in Canada.

Objectives: To: (1) identify and systematically map the available evidence; (2) investigate the design and conduct of research; (3) identify and categorize key characteristics; and (4) identify and analyze knowledge gaps related to healthcare system barriers for people living with ME in Canada.

Methods: The protocol was preregistered in July 2022. Peer-reviewed and grey literature was searched, and patient partners retrieved additional records. Eligible records were Canadian, included people with ME/CFS and included data or synthesis relevant to healthcare system barriers.

Results: In total, 1821 records were identified, 406 were reviewed in full, and 21 were included. Healthcare system barriers arose from an underlying lack of consensus and research on ME and ME care; the impact of long-standing stigma, disbelief, and sexism; inadequate or inconsistent healthcare provider education and training on ME; and the heterogeneity of care coordinated by family physicians.

Conclusions: People living with ME in Canada face significant barriers to care, though this has received relatively limited attention. This synthesis, which points to several areas for future research, can be used as a starting point for researchers, healthcare providers and decision-makers who are new to the area or encountering ME more frequently due to the COVID-19 pandemic.

Source: Said Hussein, Lauren Eiriksson, Maureen MacQuarrie, Scot Merriam, Maria Dalton, Eleanor Stein, Rosie Twomey. Healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis: a scoping review. medRxiv [Preprint] https://www.medrxiv.org/content/10.1101/2023.09.20.23295809v1.full-text (Full text)

Long Covid requires a global response centred on equity and dialogue

Abstract:

Long Covid, or Post-Covid Conditions, is a global health problem. Yet we know strikingly little about the different experiences of Long Covid patients cross-nationally. To address this shortcoming, we conducted an online survey of Long Covid patients active on social media in the U.S. (n = 334, October to December 2021) and Brazil (n = 144, January to April 2022). Our analysis of short answer responses indicates patient dissatisfaction with medical care provided for Long Covid in both the U.S. and Brazil. For Long Covid patients in Brazil, there were additional concerns raised about the lack of local expertise about their condition.

Based on these results, we urge policymakers to expand the education of medical professionals in order to raise awareness of Long Covid. Experts in the Global North should also be encouraged to engage in dialogue with patient groups and experts in the Global South, in order to better understand how local contexts shape the experience of Long Covid.

Source: Au L, Capotescu C, Curi A, Gonçalves Leonel da Silva R, Eyal G. Long Covid requires a global response centred on equity and dialogue. Glob Health Action. 2023 Dec 31;16(1):2244757. doi: 10.1080/16549716.2023.2244757. PMID: 37581581; PMCID: PMC10431739. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10431739/ (Full text)

eLearning improves allied health professionals’ knowledge and confidence to manage medically unexplained chronic fatigue states: A randomized controlled trial

Abstract:

Objectives: To evaluate the impact of eLearning by allied health professionals on improving the knowledge and confidence to manage people with medically unexplained chronic fatigue states (FS).

Methods: Using a parallel randomized controlled trial design, participants were randomized 1:1 to a 4-week eLearning or wait-list control group. Knowledge and self-reported confidence in clinical skills to implement a therapeutic intervention for patients with FS were assessed at baseline, post-intervention and follow-up. Secondary outcomes (adherence and satisfaction with online education, knowledge retention) were also assessed. Data was analyzed using intention-to-treat.

Results: There were 239 participants were randomized (eLearning n = 119, control n = 120), of whom 101 (85%) eLearning and 107 (89%) control participants completed baseline assessments and were included in the analysis. Knowledge (out of 100) improved significantly more in the eLearning group compared to the control group [mean difference (95% CI) 8.6 (5.9 to 11.4), p < 0.001]. Knowledge was reduced in the eLearning group at follow-up but was still significantly higher than baseline [6.0 (3.7 to 8.3), p < 0.001]. Median change (out of 5) in confidence in clinical skills to implement the FS intervention was also significantly greater in the eLearning group compared to the control group [knowledge: eLearning (1.2), control (0); clinical skills: eLearning (1), control (0.1); both p < 0.001)]. Average time spent on the eLearning program was 8.8 h. Most participants (80%) rated the lesson difficulty as at the “right level”, and 91% would recommend it to others.

Conclusions: eLearning increased knowledge and confidence to manage FS amongst allied health professionals and was well-accepted.

Registration: ACTRN12616000296437 https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370222&isReview=true.

Source: Jones MD, Casson SM, Barry BK, Li SH, Valenzuela T, Cassar J, Lamanna C, Lloyd AR, Sandler CX. eLearning improves allied health professionals’ knowledge and confidence to manage medically unexplained chronic fatigue states: A randomized controlled trial. J Psychosom Res. 2023 Aug 16;173:111462. doi: 10.1016/j.jpsychores.2023.111462. Epub ahead of print. PMID: 37619433. https://www.sciencedirect.com/science/article/pii/S0022399923003197 (Full text)

Evaluation of a Webinar to Increase Health Professionals’ Knowledge about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe chronic illness and patients with ME/CFS are often medically underserved in Germany and other countries. One contributing factor is health professionals’ lack of knowledge about epidemiology, diagnostic criteria, and treatment of ME/CFS. Opportunities are scarce for health professionals to receive continuing medical education on ME/CFS.
The current research addressed this need for further education and investigated the gain of knowledge from a webinar for German-speaking health professionals. In two studies (total sample: N = 378), participants in the intervention condition completed a knowledge test twice (before and after webinar participation). Study 2 also included a waiting-list control condition with repeated response to the knowledge test without webinar participation between measurements.
Results showed that at baseline, most participants had seen patients with ME/CFS, but confidence in diagnosing and treating ME/CFS was only moderate-to-low. In the intervention condition, but not in the control condition, knowledge about ME/CFS increased between the first and the second knowledge test. These results indicate that the webinar was successful in increasing health professionals’ knowledge about ME/CFS. We concluded that webinars can be a cost-efficient and effective tool in providing health professionals with large-scale continuing medical education about ME/CFS.
Source: Froehlich L, Niedrich J, Hattesohl DBR, Behrends U, Kedor C, Haas J-P, Stingl M, Scheibenbogen C. Evaluation of a Webinar to Increase Health Professionals’ Knowledge about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Healthcare. 2023; 11(15):2186. https://doi.org/10.3390/healthcare11152186 https://www.mdpi.com/2227-9032/11/15/2186 (Full text)

Patient and clinician experiences of fibromyalgia, ME/CFS and medically unexplained symptoms: A meta-aggregative systematic review

Abstract:

Objectives: Fibromyalgia (FM), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and other syndromes with medically unexplained symptoms (MUS) pose significant healthcare challenges. We aimed to synthesize qualitative evidence regarding the experiences of persons with these conditions (PwC) and their healthcare professionals (HCPs).

Methods & Measures: Databases were searched using terms relating to FM/ME/CFS/MUS, Experience and Qualitative research. Studies published between 2001-2021 concerning adult PwC or HCP perspectives were included and synthesized using Meta-Aggregation, with confidence established following the ConQual approach.

Results: 143 studies were included, with 708 findings aggregated into 82 categories and 13 synthesized findings. PwC narratives reflected a range of themes concerning: The experience of symptoms; The patient journey; Identity loss and change; Managing chronic illness; Understanding and legitimacy; Support needs and experiences; Healthcare needs and experiences; and Managing the healthcare encounters. HCPs perspective themes included: Beliefs and attitudes towards patients; Sensemaking at the limits of medical knowledge; Consultation and management; The patient-clinician relationship; and Barriers and facilitators to care.

Conclusion: Sensemaking challenges are at the core of the patient and clinician experience of MUS, FM and ME/CFS. While gaps in biomedical knowledge are clear, this review highlights the need to address the patient-clinician dynamic in the context of uncertainty.

Source: Duda N, Maguire R, Gitonga I, Corrigan S. Patient and clinician experiences of fibromyalgia, ME/CFS and medically unexplained symptoms: A meta-aggregative systematic review. PsyArXiv [Preprint], 28 Apr 2023  https://psyarxiv.com/5ct4k/ (Full text)

Investigating undergraduate medical education on myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

Background and Objectives: ME/CFS is a poorly understood, highly stigmatised condition which significantly reduces patients’ quality of life. ME/CFS had been identified as a gap in many health professionals’ knowledge, therefore this research aims to explore the understanding of ME/CFS amongst UK medical students.

Methods: An online survey developed using Redcap was distributed to participants who were recruited via social media or via medical societies’ emails. The participants were undergraduate UK medical students.

Results: 94 students completed the survey from more than 16 medical schools. 35% of the students did not know what ME/CFS is and 88% say that the disease has not been covered in their course so far. 89% of participants would like to learn more about ME/CFS, specifically through elearning and videos.

Discussion: Participants were generally unaware of ME/CFS and its symptoms and had not received relevant teaching or exposure to the disease. Education on ME/CFS within undergraduate UK medical schools is currently inadequate and the interest expressed by students in this survey demonstrates a new teaching opportunity for UK medical schools.

Source: Victoria Alice Reid and Nina Muirhead.Investigating undergraduate medical education on myalgic encephalomyelitis/chronic fatigue syndrome. The British Student Doctor Journal (BSDJ), Cardiff University Press, Year: 2022, Volume: 6 Issue: 1, Page/Article: 35-40. https://thebsdj.cardiffuniversitypress.org/articles/308 (Full text available as PDF file)

Medical School Education on Myalgic Encephalomyelitis

Abstract:

Background and objectives: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex multi-system disease with a significant impact on the quality of life of patients and their families, yet the majority of ME/CFS patients go unrecognised or undiagnosed. For two decades, the medical education establishment in the UK has been challenged to remedy these failings, but little has changed. Meanwhile, there has been an exponential increase in biomedical research and an international paradigm shift in the literature, which defines ME/CFS as a multisystem disease, replacing the psychogenic narrative. This study was designed to explore the current UK medical school education on ME/CFS and to identify challenges and opportunities relating to future ME/CFS medical education. Materials and methods: A questionnaire, developed under the guidance of the Medical Schools Council, was sent to all 34 UK medical schools to collect data for the academic year 2018-2019.

Results: Responses were provided by 22 out of a total of 34 medical schools (65%); of these 13/22 (59%) taught ME/CFS, and teaching was led by lecturers from ten medical specialties. Teaching delivery was usually by lecture; discussion, case studies and e-learning were also used. Questions on ME/CFS were included by seven schools in their examinations and three schools reported likely clinical exposure to ME/CFS patients. Two-thirds of respondents were interested in receiving further teaching aids in ME/CFS. None of the schools shared details of their teaching syllabus, so it was not possible to ascertain what the students were being taught.

Conclusions: This exploratory study reveals inadequacies in medical school teaching on ME/CFS. Many medical schools (64% of respondents) acknowledge the need to update ME/CFS education by expressing an appetite for further educational materials. The General Medical Council (GMC) and Medical Schools Council (MSC) are called upon to use their considerable influence to bring about the appropriate changes to medical school curricula so future doctors can recognise, diagnose and treat ME/CFS. The GMC is urged to consider creating a registered specialty encompassing ME/CFS, post-viral fatigue and long Covid.

Source: Muirhead N, Muirhead J, Lavery G, Marsh B. Medical School Education on Myalgic Encephalomyelitis. Medicina (Kaunas). 2021 May 28;57(6):542. doi: 10.3390/medicina57060542. PMID: 34071264. https://pubmed.ncbi.nlm.nih.gov/34071264/

Medical School Education on Myalgic Encephalomyelitis

Abstract:

Background and objectives: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS is a common complex multi-system disease with a significant impact on the quality of life of patients and their families, yet the majority of ME/CFS patients go unrecognised or undiagnosed. For two decades the medical education establishment in the UK has been challenged to remedy these failings, but little has changed. This study was designed to ascertain the current UK medical school education on ME/CFS and to identify challenges and opportunities to inform the future of medical education.

Materials and methods: A questionnaire, developed under the guidance of the Medical Schools Council, was sent to all 34 UK Medical Schools to collect data for the academic year 2018-2019.

Results: Responses were provided by 22 out of a total of 34 medical schools (65%). 59% of respondents taught ME/CFS, led by specialists drawn from 6 medical disciplines. Teaching delivery was usually by lecture; however, discussion case studies and e-learning were used. 7 schools included questions on ME/CFS in their examinations and 3 schools reported likely clinical exposure to ME/CFS patients. 64% of respondents were interested in receiving further teaching aids in ME/CFS. None of the schools shared details of their teaching syllabus so it was not possible to ascertain what students were being taught.

Conclusions: UK medical school teaching in ME/CFS is shown to be inadequate. Several medical disciplines, with known differences about the disease, need to set these aside to give greater clarity in teaching undergraduates so they can more easily recognise and diagnose ME/CFS. Improvements are proposed in ME/CFS medical education consistent with the international paradigm shift in biomedical understanding of this disease. Many medical schools (64% of respondents) acknowledge this need by expressing a strong appetite for the development of further teaching aids and materials. The GMC and MSC are called upon to use their considerable influence to bring about the appropriate changes to medical school curricula so future doctors can recognise, diagnose and treat ME/CFS. The GMC should also consider creating a registered speciality encompassing ME/CFS, post viral fatigue and Long Covid.

Source: Muirhead, N.; Muirhead, J.; Lavery, G.; Marsh, B. Medical School Education on Myalgic Encephalomyelitis. Preprints 2021, 2021030420 https://www.preprints.org/manuscript/202103.0420/v1

CDC Awards Medscape Education Three Contracts to Develop Medical Education Programming Addressing Major Public Health Needs

Press Release: NEW YORK, Nov. 10, 2020 /PRNewswire/ — Medscape, the leading source of continuing medical education, clinical news, health information, and point-of-care tools for health care professionals (HCPs), has been awarded three contracts by the Centers for Disease Control and Prevention (CDC) Division of Cancer Prevention and Control and the National Center for Emerging and Zoonotic Infectious Diseases (NCEZID). These programs, focused on cancer care, invasive mold infections and chronic fatigue syndrome, will be developed by Medscape Education and delivered to its multi-specialty membership with certification for both physicians and nurses. A division of Medscape, Medscape Education is the leading destination for continuous professional development for HCPs. While the medical world is appropriately focused on COVID-19, it is essential that other clinical topics, which impact the lives of millions of patients, are not overlooked. The programming will be focused on the following:

Cancer care: In collaboration with the National Association of Chronic Disease Directors, Medscape Education will develop curriculum focused on the need for physicians to engage patients on their post-treatment lifestyle such as alcohol and tobacco use, the impact of stress and anxiety, and the importance of physical activity and nutrition, while building awareness of CDC’s “Talk to Someone” tool designed to help cancer patients manage their disease.

Chronic Fatigue Syndrome: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MECFS) is a severe, long-term illness. People with MECFS are often unable to engage in daily activity due to severe fatigue. COVID-19 brings a new concern to these symptoms, as Dr. Anthony Fauci noted that a consequence of COVID-19 is post-viral syndrome which includes fatigue and difficulty concentrating. Medscape Education will bring these concepts to life through an interactive roundtable discussion designed for physicians, nurses and pharmacists.

Invasive mold infections (IMIs): After natural disasters, such as hurricanes or floods, residents are likely exposed to mold as they return to their homes and begin the remediation process. For immunocompromised people, IMIs can cause severe illness and even death. Medscape Education will develop educational programming for physicians and nurses designed to educate their immunocompromised patients about preventative measures to avoid IMIs.

“Medscape Education is honored to be selected by the Centers for Disease Control and Prevention to develop these educational programs, across a variety of public health issues, which if not rapidly and appropriately treated, can result in advanced illness and even death,” said Douglas Kaufman, Group Vice President, Medscape.

As COVID-19 has increased clinician reliance on digital solutions, Medscape Education continues to focus on providing the most current, practice-relevant education.

“The need to educate providers via Medscape’s trusted and credible digital platform could not be more essential, especially during this time of heightened anxiety and an overwhelmed healthcare system,” Kaufman noted.

The activities will be hosted at www.medscape.org and will be available for continuing education credit.

About Medscape

Medscape is the leading source of clinical news, health information, and point-of-care tools for health care professionals. Medscape offers specialists, primary care physicians, and other health professionals the most robust and integrated medical information and educational tools. Medscape Education (medscape.org) is the leading destination for continuous professional development, consisting of more than 30 specialty-focused destinations offering thousands of free C.M.E. and C.E. courses and other educational programs for physicians, nurses, and other health care professionals. Medscape is a subsidiary of WebMD Health Corp.

About Medscape Education

Medscape Education (medscape.org), a division of Medscape, is the leading destination for continuous professional development, consisting of more than 30 specialty-focused destinations offering thousands of free C.M.E. and C.E. courses and other educational programs for physicians, nurses, and other health care professionals.

Medscape is the leading source of clinical news, health information, and point-of-care tools for health care professionals. Medscape offers specialists, primary care physicians, and other health professionals the most robust and integrated medical information and educational tools. Medscape is a subsidiary of WebMD Health Corp.

About WebMD

WebMD Health Corp., an Internet Brands Company, is the leading provider of health information services, serving patients, physicians, health care professionals, employers, and health plans through public and private online portals, mobile platforms, and health-focused publications. The WebMD Health Network includes WebMD Health, Medscape, Jobson Healthcare Information, prIME Oncology, MediQuality, Frontline, Vitals Consumer Services, Aptus Health, MedicineNet, eMedicineHealth, RxList, OnHealth, Medscape Education, and other owned WebMD sites. WebMD®, Medscape®, CME Circle®, Medpulse®, eMedicine®, MedicineNet®, theheart.org®, and RxList® are among the trademarks of WebMD Health Corp. or its subsidiaries.

SOURCE WebMD Health Corp.

The negative impact of the psychiatric model of chronic fatigue syndrome on doctors’ understanding and management of the illness

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling condition that greatly impacts the lives of sufferers. Many sufferers report problems getting a confirmatory diagnosis and difficulties getting doctors to believe them and offer support. Objective: This paper explores this issue by examining a biopsychosocial (BPS) model of ME/CFS promoted within psychiatry and its potential influence on how doctors might view and manage the illness.

Method: A narrative literature review is undertaken to identify salient theory and discourse for consideration.

Findings: Psychiatrists proffer a hypothetical model of ME/CFS aetiology and continuance, that instructs doctors to view the illness as a syndrome perpetuated by psycho-social factors that sustain unexplained symptoms such as fatigue, pain and post-exertional malaise, rather than symptoms being related to biological disease processes. The psychiatric model theorises that patients’ symptoms are maintained by their maladaptive beliefs and behaviours, requiring psychotherapy.

Conclusion: The psychiatric BPS model of ME/CFS may negatively bias how physicians approach the illness, with doctors directed to view patients’ complaints as manifestations of psychological distress, rather than physical symptoms that require medical investigation or intervention. This finding may help explain why many ME/CFS patients feel disbelieved and unsupported after seeking medical care. Psychiatric theory fails to acknowledge or incorporate a substantial body of evidence showing biological deficits associated with ME/CFS. Medical trainees and physicians need more training and clinical exposure to ME/CFS patients, armed with better awareness of misleading and unproven claims associated with the BPS model.

Source: Keith Geraghty (2020) The negative impact of the psychiatric model of chronic fatigue syndrome on doctors’ understanding and management of the illness, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2020.1834295 https://www.tandfonline.com/doi/abs/10.1080/21641846.2020.1834295?journalCode=rftg20