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Background and Objectives: There is some evidence that knowledge and understanding of ME among doctors is limited. Consequently, an audit study was carried out on a group of hospital doctors attending a training event to establish how much they knew about ME and their attitudes towards it. Materials and Methods: Participants at the training event w...
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Citations
... This may be heightened by General Practitioners (GPs) lack of knowledge, and in some cases, an unwillingness to recognise ME/CFS as a genuine illness [12,13]. For example, across a range of countries many doctors and medical students have reported that they are unsure that ME/CFS is real, while patients have reported suspicion of their condition by healthcare professionals [3,12,[14][15][16]. ...
... Issues with diagnosis have been suggested to fuel the stigmatisation of the condition, with stereotypes and potential maltreatment of patients based on a lack of knowledge and awareness [11]. Hospital doctors reported a lack of formal teaching on ME/CFS, and knew little about the clinical manifestations of the condition, the appropriate management, and its impact on daily living [16]. Further, in a survey of 811 UK GPs less than half of respondents correctly identified all three key clinical features of ME/CFS [3]. ...
... Further, in a survey of 811 UK GPs less than half of respondents correctly identified all three key clinical features of ME/CFS [3]. GP's and hospital doctors have also reported a lack of confidence in diagnosing and managing ME/CFS patients [3,16,17] . ...
Introduction
Myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) is a chronic condition which may be characterised by debilitating fatigue, post-exertional malaise, unrefreshing sleep, and cognitive difficulties. ME/CFS has significant negative impact on quality of life for those living with the condition. This may be exacerbated by a lack of knowledge within healthcare regarding the condition. Previous research has found that immersive virtual reality (VR) educational experiences within healthcare education can increase knowledge and empathy.
Methods
The present study employed a quasi-experimental pre-test-post-test design to investigate the impact of a short immersive VR educational experience on knowledge of ME/CFS and empathy for those living with the condition. The VR experience placed participants into a virtual scene which told real life stories of the experience of people living with ME/CFS and their families. 43 participants completed in this pilot study: 28 medical students and 15 primary care health professionals. Participants completed measures of knowledge of ME/CFS and empathy before and after engagement with the experience.
Results
A statistically significant increase was found for levels of knowledge (p < .001, d = 0.74) and empathy (p < .001, d = 1.56) from pre-VR experience levels to post-VR experience levels with a medium and large effect size, respectively. Further analysis revealed no statistically significant difference between baseline levels of knowledge of ME/CFS between healthcare professionals and medical students.
Discussion
The present study is the first to explore the use of this short immersive VR experience as an education tool within healthcare to increase knowledge of ME/CFS, and empathy for those living with the condition. Findings allude to the previously established lack of knowledge of ME/CFS within healthcare although promisingly the increases in knowledge and empathy found suggest that this immersive VR experience has potential to address this. Such changes found in this small-scale pilot study suggest that future research into the use of VR as an educational tool within this setting may be beneficial. Use of a control group, and larger sample size as well as investigation of retention of these changes may also enhance future research.
... However, secondary prevention is possible to reduce diagnostic delay, the incidence of severe and prolonged disease, and costs of care. One way to minimise diagnostic delays is to rectify the disbelief of doctors and the stigmatization around ME/CFS (53, 533,534). In 1969, the WHO classified ME/CFS as a neurological disease (44) based on the neurological features of the disease. ...
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, debilitating disease characterised by a wide range of symptoms that severely impact all aspects of life. Despite its significant prevalence, ME/CFS remains one of the most understudied and misunderstood conditions in modern medicine. ME/CFS lacks standardised diagnostic criteria owing to variations in both inclusion and exclusion criteria across different diagnostic guidelines, and furthermore, there are currently no effective treatments available. Moving beyond the traditional fragmented perspectives that have limited our understanding and management of the disease, our analysis of current information on ME/CFS represents a significant paradigm shift by synthesising the disease’s multifactorial origins into a cohesive model. We discuss how ME/CFS emerges from an intricate web of genetic vulnerabilities and environmental triggers, notably viral infections, leading to a complex series of pathological responses including immune dysregulation, chronic inflammation, gut dysbiosis, and metabolic disturbances. This comprehensive model not only advances our understanding of ME/CFS’s pathophysiology but also opens new avenues for research and potential therapeutic strategies. By integrating these disparate elements, our work emphasises the necessity of a holistic approach to diagnosing, researching, and treating ME/CFS, urging the scientific community to reconsider the disease’s complexity and the multifaceted approach required for its study and management.
... Today, scientific papers portraying ME/CFS as psychosomatic continue to be published [59]. Many physicians still believe that ME/CFS is a psychosomatic disease [60], and 90% of patients with ME/CFS are at least once told by health professionals that their symptoms are psychosomatic before receiving an ME/CFS diagnosis [61]. In stark contrast to these widespread beliefs, empirical evidence does not support a psychosomatic etiology of ME/CFS [41]. ...
... Research shows that across different topics such as homeopathy, vaccination, or COVID-19, individuals who strongly disagree with the scientific consensus are, on average, less knowledgeable about the topics than others but are more convinced of their knowledge [97]. Together with the known lack of knowledge about ME/CFS by physicians [45,60], this makes it necessary for political and medical institutions to broadly inform physicians and the public about the disease in order to counter misinformation and prevent patients from being stigmatized, misdiagnosed, and mistreated based on incorrect psychosomatic theories. Expert-led webinars have been shown to be a feasible approach to educating physicians about the nature of ME/CFS, resulting in physicians making fewer incorrect psychosomatic attributions of ME/CFS in a knowledge test after attending the webinar [98]. ...
Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization. Although numerous studies over time have uncovered organic abnormalities in patients with ME/CFS, and the majority of researchers to date classify the disease as organic, many physicians still believe that ME/CFS is a psychosomatic illness. In this article, we show how detrimental this belief is to the care and well-being of affected patients and, as a consequence, how important the education of physicians and the public is to stop misdiagnosis, mistreatment, and stigmatization on the grounds of incorrect psychosomatic attributions about the etiology and clinical course of ME/CFS.
... However, recovery doesn't imply absence of functional impairment [50]. Limited ME/CFS-specific awareness among healthcare providers [51][52][53], coupled with rising prevalence, increases the risk of inadequate care and secondary issues. ...
... Limited data on ME/CFS, in general, may partially result from insufficient disease-specific knowledge and experience [48,51], and different ME/CFS case definitions render the comparison of published data challenging [77,78]. Moreover, high time and cost expenses for the diagnostic workup may prevent clinicians from diagnosing ME/CFS and as a result these patients often get no adequate care. ...
A subset of patients with post-COVID-19 condition (PCC) fulfill the clinical criteria of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). To establish the diagnosis of ME/CFS for clinical and research purposes, comprehensive scores have to be evaluated. We developed the Munich Berlin Symptom Questionnaires (MBSQs) and supplementary scoring sheets (SSSs) to allow for a rapid evaluation of common ME/CFS case definitions. The MBSQs were applied to young patients with chronic fatigue and post-exertional malaise (PEM) who presented to the MRI Chronic Fatigue Center for Young People (MCFC). Trials were retrospectively registered (NCT05778006, NCT05638724). Using the MBSQs and SSSs, we report on ten patients aged 11 to 25 years diagnosed with ME/CFS after asymptomatic SARS-CoV-2 infection or mild to moderate COVID-19. Results from their MBSQs and from well-established patient-reported outcome measures indicated severe impairments of daily activities and health-related quality of life.
Conclusions: ME/CFS can follow SARS-CoV-2 infection in patients younger than 18 years, rendering structured diagnostic approaches most relevant for pediatric PCC clinics. The MBSQs and SSSs represent novel diagnostic tools that can facilitate the diagnosis of ME/CFS in children, adolescents, and adults with PCC and other post-infection or post-vaccination syndromes. What is Known:
• ME/CFS is a debilitating disease with increasing prevalence due to COVID-19. For diagnosis, a differential diagnostic workup is required, including the evaluation of clinical ME/CFS criteria.
• ME/CFS after COVID-19 has been reported in adults but not in pediatric patients younger than 19 years.
What is New:
• We present the novel Munich Berlin Symptom Questionnaires (MBSQs) as diagnostic tools to assess common ME/CFS case definitions in pediatric and adult patients with post-COVID-19 condition and beyond.
• Using the MBSQs, we diagnosed ten patients aged 11 to 25 years with ME/CFS after asymptomatic SARS-CoV-2 infection or mild to moderate COVID-19.
... In our study, failure to address PEM led to ineffective, harmful healthcare and respondents reported poor disease understanding of ME/CFS among healthcare providers and a lack of validation of their illness experiences (see also Table 6). This has also been reported in previous studies (42,43,45,79,80). The high internal consistency of not addressing PEM and a reported approach that was poorly customized to ME/CFS suggests that these elements may measure a similar notion of viewing ME/CFS (58). ...
... Illnesses that lack clear pathophysiology, that has inconsistent diagnostic criteria, inadequate research focus, and lack of proper training, seem frequently to be related to negative consequences or iatrogenesis for the patient (80)(81)(82). As in our study, Geraghty and Blease (32) recognized several modalities of iatrogenesis in ME/CFS such as high levels of patient dissatisfaction, challenges to the patients' narratives and experiences, and negative responses to therapy. ...
... In general, ME/CFS-specific knowledge seems limited in many healthcare providers (80,81,(90)(91)(92)(93) and usually ignored in their education (93). The reported iatrogenesis may be traced back to this but also to the fact that at present, ME/CFS is not covered by a defined clinical specialty. ...
Background
Post-exertional malaise (PEM) is considered a hallmark characteristic of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This may also apply to subgroups of patients with long COVID-induced ME/CFS. However, it is uncertain to what extent PEM is acknowledged in routine specialist healthcare for ME/CFS patients, and how this affects patient outcomes.
Objective
This study aims to evaluate to what extent ME/CFS patients experienced focus on PEM in specialist healthcare practice and its significance for outcome and care quality.
Methods
Data from two online cross-sectional surveys covering specialist healthcare services for ME/CFS patients at rehabilitation institutes in Norway and two regional hospitals, respectively, were analyzed. Evaluations of 788 rehabilitation stays, 86 hospital consultations, and 89 hospital interventions were included. Logistic regression models and Mann–Whitney U-tests were used to quantify the impact of addressing PEM on health and functioning, care satisfaction, or benefit. Spearman’s rank correlation and Cronbach’s alpha of focus on PEM with the respondents’ perception of healthcare providers’ knowledge, symptom acknowledgment, and suitability of intervention were assessed as measures for care quality and their internal consistency, respectively.
Results
PEM was addressed in 48% of the rehabilitation stays, 43% of the consultations, and 65% of the hospital interventions. Failure to address PEM roughly doubled the risk of health deterioration, following rehabilitation (OR = 0.39, 95% CI 0.29–0.52; 40.1% vs. 63.2% P = <0.001) and hospital intervention (OR = 0.34, 95% CI 0.13–0.89; 22.4% vs. 45.2%, p = 0.026). The focus on PEM (PEM-focus) during the clinical contact was associated with significantly higher scores on patients’ rated care satisfaction and benefit of both consultation and intervention. Furthermore, addressing PEM was (inter)related to positive views about healthcare providers’ level of knowledge of ME/CFS, their acknowledgment of symptoms, obtained knowledge, and the perceived suitability of intervention (Cronbach’s alpha ≥0.80).
Discussion
PEM is still frequently not acknowledged in specialist healthcare practice for ME/CFS patients in Norway. Not addressing PEM substantially increased the probability of a decline in health and functioning following the intervention and was strongly associated with reduced perceived care quality, satisfaction, and benefit. These findings may be related to the applied explanatory models for ME/CFS and are most likely of relevance to long COVID.
... Patients frequently report being dissatisfied with their medical care and experience stigmatization due to the misconception of ME/CFS being a psychosomatic and/or psychiatric illness [22][23][24]. A major contributing factor to this insufficient and unsatisfying medical care situation of patients with ME/CFS is health professionals' lack of knowledge about the symptoms, diagnostic criteria, and treatment of ME/CFS [19,21,25]. For example, a systematic review of 33 studies investigating general practitioners' (GP) knowledge about ME/CFS by Pheby et al. [26] showed that a substantial proportion of GPs did not accept ME/CFS as a genuine clinical entity and even those who did lacked confidence in diagnosing or managing it. ...
... Similarly, a survey conducted among 23 experts from the European ME/CFS Research Network (EUROMENE) [11] demonstrated that experts believed that only a small minority of GPs in their country were able to recognize ME/CFS, and were confident in diagnosing and managing it. Moreover, Hng et al. [25] conducted a survey about the knowledge and experience of ME/CFS among 44 UK hospital doctors. Participants reported having very limited formal teaching, but some clinical experience with ME/CFS. ...
... Providing continuing education about ME/CFS for health professionals is a demand recognized on the European level as well [11,25]. However, to date, there is no study demonstrating that participation in continuing medical education increases health professionals' knowledge about the epidemiology, diagnostic criteria, and treatment of ME/CFS. ...
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.
... This result is in line with findings from a recent audit performed in the UK showing that 91% of the health care providers considered ME/CFS at least partly psychological and demonstrated poor overall disease knowledge. 34 Swiss patients with ME/CFS have therefore developed mistrust of, and resentment toward, psychologists/psychiatrists. Interestingly, however, onethird of the ME/CFS diagnoses were actually provided by psychiatrists who rejected the psychological etiology underlying the specialists' referrals and instead identified a somatic health problem. ...
... Most physicians and health care providers in Switzerland have limited knowledge of the disease, as also reported in other studies. 21,22,34 Some additional described barriers to heath care in our study, were the lack of house visits by GPs for house or bedbound patients; the remoteness of specialized physicians, thereby making access difficult for patients with ME/CFS; and the difficulty in receiving follow-up care after diagnosis because of the high cost of private clinics. Poor overall disease knowledge was also reflected in the therapies recommended by physicians to patients. ...
Objectives:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex chronic and debilitating multifactorial disease. Adequate patient care is challenged by poor knowledge among health care professionals and the historical misconception that the disease is psychological in nature. This study assessed the health-related challenges faced by patients with ME/CFS in Switzerland and examined whether they receive adequate health care.
Methods:
Quantitative and qualitative data were collected through a self-administered questionnaire between June and September of 2021, among 169 patients with ME/CFS in Switzerland.
Results:
The mean age at diagnosis was 38.8 years. Only one-third of ME/CFS affected children and youth were correctly diagnosed before their 18th birthday. The mean time from disease onset to diagnosis was 6.7 years, and patients had an average of 11.1 different appointments and 2.6 misdiagnoses. A poor diagnosis rate and insufficient disease knowledge among health professionals in Switzerland led 13.5% of the patients to travel abroad to seek a diagnosis. Most patients (90.5%) were told at least once that their symptoms were psychosomatic. Swiss patients expressed high dissatisfaction with the health system and indicated that physicians lacked knowledge regarding ME/CFS. Therapies prescribed by physicians or tried by patients, as well as their perceived efficacy, were described. Graded Exercise Therapy (GET) was perceived as harmful by patients, whereas pacing, complementary/alternative medicine, and dietary supplements and medications to alleviate symptoms were reported to be helpful to varying degrees.
Conclusion:
This study highlights that poor disease knowledge among health care providers in Switzerland has led to high patient dissatisfaction, and delays in ME/CFS diagnoses and prescription of inappropriate therapies, thus adding to patient distress and disease burden.
... The qualitative evidence identified barriers to reaching diagnosis leading to prolonged times to diagnosis, along with a lack of available treatments and stigma. A recently published study involving a survey of hospital-based medical doctors in the UK reported that 27% of respondents had received formal training on ME/CFS; 89% did not know how to diagnose the condition; and 93% did not feel confident working with this patient population [29]. Concerningly, 82% of respondents reported that ME/CFS was either partly of entirely a psychological condition. ...
... This UK-based study used primary care data and estimated prevalence using three diagnostic criteria: Centres for Disease Control (CDC) criteria: 0.19%; Canadian criteria: 0.11%; and 0.003% using Epidemiological Case definition criteria. As noted above, physicians participating in a UK study had limited knowledge of ME/CFS, potentially contributing to an underestimate of prevalence [29]. Higher rates were reported in a USbased study published in 1993. ...
Background
ME/CFS is a disorder characterized by recurrent fatigue and intolerance to exertion which manifests as profound post-exertional malaise. Prevalence studies internationally have reported highly variable results due to the 20 + diagnostic criteria. For Australia, the prevalence of ME/CFS based on current case definitions is unknown.
Objectives
To report prevalence of ME/CFS in patients aged ≥ 13 years attending Australian primary care settings for years 2015–2019, and provide context for patterns of primary care attendance by people living with ME/CFS.
Methodology
Conducted in partnership with the Patient Advisory Group, this study adopted a mixed methods approach. De-identified primary care data from the national MedicineInsight program were analyzed. The cohort were regularly attending patients, i.e. 3 visits in the preceding 2 years. Crude prevalence rates were calculated for years 2015–2019, by sex, 10-year age groups, remoteness and socioeconomic status. Rates are presented per 100,000population (95% confidence intervals (CI)). Qualitative data was collected through focus groups and in-depth 1:1 interview.
Results
Qualitative evidence identified barriers to reaching diagnosis, and limited interactions with primary care due to a lack of available treatments/interventions, stigma and disbelief in ME/CFS as a condition.
In each year of interest, crude prevalence in the primary care setting ranged between 94.9/100,000 (95% CI: 91.5–98.5) and 103.9/100,000 population (95%CI: 100.3–107.7), equating to between 20,140 and 22,050 people living with ME/CFS in Australia in 2020. Higher rates were observed for age groups 50-59 years and 40-49 years. Rates were substantially higher in females (130.0–141.4/100,000) compared to males (50.9–57.5/100,000). In the context of the qualitative evidence, our prevalence rates likely represent an underestimate of the true prevalence of ME/CFS in the Australian primary care setting.
Conclusion
ME/CFS affects a substantial number of Australians. Whilst this study provides prevalence estimates for the Australian primary care setting, the qualitative evidence highlights the limitations of these. Future research should focus on using robust case ascertainment criteria in a community setting. Quantification of the burden of disease can be used to inform health policy and planning, for this understudied condition.
... Furthermore, the study of perceptions of ME/CFS experts across Europe indicated that this situation was current throughout Europe [11]. An exploratory survey of UK medical schools by Muirhead et al. indicated that undergraduate teaching about ME/CFS was generally inadequate [12], while, at the postgraduate level, evidence is evinced here of considerable misconceptions about the nature of ME/CFS, its diagnosis and management among UK junior hospital doctors [13]. It should be appreciated that this failure to recognize ME/CFS as a genuine clinical entity is not merely an interesting academic dispute. ...
... However, secondary prevention is a different matter altogether, and programs to minimize diagnostic delays would have a beneficial effect on both health and the costs of care, by reducing the incidence of prolonged and severe disease [43]. An important element in implementing such a secondary prevention strategy must be measures to address the problems of disbelief and lack of knowledge and understanding among doctors referred to above [10][11][12][13]. ...
This collection of research papers addresses fundamental questions concerning the nature of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), the problem of disbelief and lack of knowledge and understanding of the condition among many doctors and the origins of this problem, and its impact on patients and their families. We report briefly the growing knowledge of the underlying pathological processes in ME/CFS, and the development of new organizations, including Doctors with ME, the US ME/CFS Clinical Coalition and EUROMENE, to address aspects of the challenges posed by the illness. We discuss the implications of COVID-19, which has much in common with ME/CFS, with much overlap of symptoms, and propose a new taxonomic category, which we are terming post-active phase of infection syndromes (PAPIS) to include both. This collection of papers includes a number of papers reporting similar serious impacts on the quality of life of patients and their families in various European countries. The advice of EUROMENE experts on diagnosis and management is included in the collection. We report this in light of guidance from other parts of the world, including the USA and Australia, and in the context of current difficulties in the UK over the promulgation of a revised guideline from the National Institute for Health and Care Excellence (NICE). We also consider evidence on the cost-effectiveness of interventions for ME/CFS, and on the difficulties of determining the costs of care when a high proportion of people with ME/CFS are never diagnosed as such. The Special Issue includes a paper which is a reminder of the importance of a person-centred approach to care by reviewing mind–body interventions. Finally, another paper reviews the scope for prevention in minimizing the population burden of ME/CFS, and concludes that secondary prevention, through early detection and diagnosis, could be of value.
