Tag: medical attitudes

The Importance of Listening in Treating Invisible Illness and Long-Haul COVID-19

Abstract:

Primary and specialty care clinicians strive to base diagnoses and treatment on specific, measurable abnormalities. Yet those with invisible, controversial illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often have symptoms not explained by standard laboratory values. For instance, one of the cardinal features of ME/CFS is postexertional malaise, the exacerbation of symptoms-fatigue, pain, cognitive dysfunction-following exertion, which contradicts studies showing the health benefits of exercise. In these cases, overly physicalist approaches to caring for patients are not likely to be helpful, and a clinician’s willingness to listen to a patient’s experience of illness becomes essential.

Source: Wall D. The Importance of Listening in Treating Invisible Illness and Long-Haul COVID-19. AMA J Ethics. 2021 Jul 1;23(7):E590-595. doi: 10.1001/amajethics.2021.590. PMID: 34351274. https://pubmed.ncbi.nlm.nih.gov/34351274/

ME/CFS: Past, Present and Future

Abstract:

This review raises a number of compelling issues related to the condition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Some historical perspective is necessary in order to highlight the nature of the controversy concerning its causation. Throughout history, a pattern tends to repeat itself when natural phenomena require explanation. Dogma usually arrives first, then it is eventually replaced by scientific understanding. The same pattern is unfolding in relation to ME/CFS, but supporters of the psychological dogma surrounding its causation remain stubbornly resistant, even in the face of compelling scientific evidence to the contrary. Acceptance of the latter is not just an academic issue; the route to proper understanding and treatment of ME/CFS is through further scientific research rather than psychological theorisation. Only then will a long-suffering patient group benefit.

Source: Weir, William, and Nigel Speight. 2021. “ME/CFS: Past, Present and Future” Healthcare 9, no. 8: 984. https://doi.org/10.3390/healthcare9080984 https://www.mdpi.com/2227-9032/9/8/984/htm (Full text)

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering Is Multiplied

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness defined predominantly by symptoms. Routine laboratory test results often are normal, raising the question of whether there are any underlying objective abnormalities. In the past 20 years, however, new research technologies have uncovered a series of biological abnormalities in people with ME/CFS. Unfortunately, many physicians remain unaware of this, and some tell patients that “there is nothing wrong” with them. This skepticism delegitimizes, and thereby multiplies, the patients’ suffering.

Source: Komaroff AL. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering Is Multiplied. Healthcare. 2021; 9(7):919. https://doi.org/10.3390/healthcare9070919 https://www.mdpi.com/2227-9032/9/7/919/htm

Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)

Abstract:

Background and Objectives: We have conducted a survey of academic and clinical experts who are participants in the European ME/CFS Research Network (EUROMENE) to elicit perceptions of general practitioner (GP) knowledge and understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and suggestions as to how this could be improved.

Materials and Methods: A questionnaire was sent to all national representatives and members of the EUROMENE Core Group and Management Committee. Survey responses were collated and then summarized based on the numbers and percentages of respondents selecting each response option, while weighted average responses were calculated for questions with numerical value response options. Free text responses were analysed using thematic analysis.

Results: Overall there were 23 responses to the survey from participants across 19 different European countries, with a 95% country-level response rate. Serious concerns were expressed about GPs’ knowledge and understanding of ME/CFS, and, it was felt, about 60% of patients with ME/CFS went undiagnosed as a result. The vast majority of GPs were perceived to lack confidence in either diagnosing or managing the condition. Disbelief, and misleading illness attributions, were perceived to be widespread, and the unavailability of specialist centres to which GPs could refer patients and seek advice and support was frequently commented upon. There was widespread support for more training on ME/CFS at both undergraduate and postgraduate levels.

Conclusion: The results of this survey are consistent with the existing scientific literature. ME/CFS experts report that lack of knowledge and understanding of ME/CFS among GPs is a major cause of missed and delayed diagnoses, which renders problematic attempts to determine the incidence and prevalence of the disease, and to measure its economic impact. It also contributes to the burden of disease through mismanagement in its early stages.

Source: Cullinan J, Pheby DFH, Araja D, Berkis U, Brenna E, de Korwin JD, Gitto L, Hughes DA, Hunter RM, Trepel D, Wang-Steverding X. Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE). Medicina (Kaunas). 2021 Feb 26;57(3):208. doi: 10.3390/medicina57030208. PMID: 33652747. https://www.mdpi.com/1010-660X/57/3/208 (Full text)

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

A Concerning Display of Medical Indifference: Reply to ‘Chronic Fatigue Syndrome and an Illness-Focused Approach to Care: Controversy, Morality and Paradox’

Abstract:

In ‘Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox’, authors Michael Sharpe and Monica Greco begin by characterising myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as illness-without-disease. On that basis they ask why patients reject treatments for illness-without-disease, and they answer with a philosophical idea. Whitehead’s ‘bifurcation of nature’, they suggest, still dominates public and professional thinking, and that conceptual confusion leads patients to reject the treatment they need. A great deal has occurred, however, since Whitehead characterised his culture’s confusions 100 years ago.

In our time, I suggest, experience is no longer construed as an invalid second cousin of bodily states in philosophy, in medicine or in the culture at large. More importantly, we must evaluate medical explanations before we reach for philosophical alternatives. The National Institutes of Health and the Institute of Medicine have concluded that ME/CFS is, in fact, a biomedical disease, and all US governmental health organisations now agree.

Although it would be productive for Sharpe and Greco to state and support their disagreement with the other side of the disease debate, it is no longer tenable, or safe, to ignore the possibility of disease in patients with ME/CFS, or to recommend that clinicians should do so. When we find ourselves in a framework that suggests the possibility of medical need is somehow beside the point for medical providers, it is time to reconsider our conceptual foundations.

Source: O’Leary D. A concerning display of medical indifference: reply to ‘Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox’ [published online ahead of print, 2020 Jun 29]. Med Humanit. 2020;medhum-2019-011743. doi:10.1136/medhum-2019-011743 https://pubmed.ncbi.nlm.nih.gov/32601171/

Predicting GP Visits: A Multinomial Logistic Regression Investigating GP Visits Amongst a Cohort of UK Patients Living With Myalgic Encephalomyelitis

Abstract:

Background: Myalgic Encephalomyelitis (ME) is a chronic condition whose status within medicine is the subject of on-going debate. Some medical professionals regard it as a contentious illness. Others report a lack of confidence with diagnosis and management of the condition. The genesis of this paper was a complaint, made by an ME patient, about their treatment by a general practitioner. In response to the complaint, Healthwatch Trafford ran a patient experience-gathering project.

Method: Data was collected from 476 participants (411 women and 65 men), living with ME from across the UK. Multinomial logistic regression investigated the predictive utility of length of time with ME; geographic location (i.e. Manchester vs. rest of UK); trust in GP; whether the patient had received a formal diagnosis; time taken to diagnosis; and gender. The outcome variable was number of GP visits per year.

Results: All variables, with the exception of whether the patient had received a formal diagnosis, were significant predictors.

Conclusions: Relationships between ME patients and their GPs are discussed and argued to be key to the effective delivery of care to this patient cohort. Identifying potential barriers to doctor patient interactions in the context of ME is crucial.

Source: Walsh RS, Denovan A, Drinkwater K, Reddington S, Dagnall N. Predicting GP visits: A multinomial logistic regression investigating GP visits amongst a cohort of UK patients living with Myalgic encephalomyelitis. BMC Fam Pract. 2020;21(1):105. Published 2020 Jun 10. doi:10.1186/s12875-020-01160-7 https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-020-01160-7 (Full text)

Survey: Doctor’s Knowledge and Understanding of ME, 2018

It has long been the experience of patients with Myalgic Encephalomyelitis (ME) that their doctors have little knowledge and understanding of the condition, and are largely unable to help. Worse, many report that their doctors do not appear to believe their illness is real, resulting in tragic lack of support.

Examination of sample medical curriculums in the United Kingdom in 2018 confirmed that as far as could be determined, Myalgic Encephalomyelitis was not in the syllabus at either undergraduate or postgraduate levels. It is therefore quite conceivable that patients’ widely reported impression is indeed true.

Read the full report HERE.

Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Abstract:

Miranda Fricker’s influential concept of epistemic injustice (Oxford University Press, Oxford, 2007) has recently seen application to many areas of interest, with an increasing body of healthcare research using the concept of epistemic injustice in order to develop both general frameworks and accounts of specific medical conditions and patient groups. This paper illuminates tensions that arise between taking steps to protect against committing epistemic injustice in healthcare, and taking steps to understand the complexity of one’s predicament and treat it accordingly. Work on epistemic injustice is therefore at risk of obfuscating legitimate and potentially fruitful inquiry.

This paper uses Chronic Fatigue Syndrome/Myalgic Encephalomyelitis as a case study, but I suggest that the key problems identified could apply to other cases within healthcare, such as those classed as Medically Unexplained Illnesses, Functional Neurological Disorders and Psychiatric Disorders. Future work on epistemic injustice in healthcare must recognise and attend to this tension to protect against unsatisfactory attempts to correct epistemic injustice.

Source: Byrne EA. Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Med Health Care Philos. 2020 Mar 13. doi: 10.1007/s11019-020-09945-4. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/32170570

Advances in ME/CFS: Past, Present, and Future

Abstract:

The forerunner of what is today termed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was described by the U.S. Public Health Service in 1934. At the present time, we still do not know its cause and/or how to detect it by routine clinical laboratory tests. In consequence, the pathological nature of ME/CFS has been overlooked and the disease has been stigmatized by being mislabeled as psychosomatic or somatoform illness. Such misperceptions of the disease have led to insufficient research exploration of the disease and minimal to absent patient care.

A 2015 Institute of Medicine report on the illness declared ME/CFS a disease affecting up to 2.5 million Americans and chastised the U.S. government for doing little to research the disease and to support its patients. Clinicians who currently treat this disease declare it to be more devastating than HIV/AIDS. A comparison of the histories of the two diseases, an examination of the current status of the two diseases, and a listing of the accomplishments that would be needed for ME/CFS to achieve the same level of treatment and care as currently experienced by patients with HIV/AIDS is provided.

Source: Friedman KJ. Advances in ME/CFS: Past, Present, and Future. Front Pediatr. 2019 Apr 18;7:131. doi: 10.3389/fped.2019.00131. eCollection 2019. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6482157/ (Full article)