Category: Medical Care

Austerity and identity formation: How welfare cutbacks condition narratives of sickness

Abstract:

In recent years, Swedish sick insurance has become more restrictive. In this article, we analyse how people not being granted payments, despite being seriously ill, are affected. Scholarship on identity formation and sickness stress the importance of constructing narratives in order to come to terms with one’s situation. Our analysis of 30 qualitative interviews with people diagnosed with ME/CFS shows that workfare politics conditions such identity formation and often prevents it from taking place.

Interviewees describe extreme stress as a result of their contacts with the Social Insurance Agency (SIA), which results in a perpetual crisis that is renewed with each new denied application. In particular, the sense of not having a future means that it is hard to construct narratives to make sense of one’s situation. To escape the perpetual crisis, some people have politicised their situation, constructing a narrative about themselves as suffering from oppressive politics. Others have escaped by not applying for sick insurance or other social insurances. But generally speaking, the most common effect of being denied sick insurance is an ongoing crisis that leads to deteriorating health.

Source: Altermark N, Plesner Å. Austerity and identity formation: How welfare cutbacks condition narratives of sickness. Sociol Health Illn. 2022 Sep;44(8):1270-1286. doi: 10.1111/1467-9566.13545. Epub 2022 Sep 6. PMID: 36066495. https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13545 (Full text)

The Advantages of an Integrative Approach in the Primary Healthcare of Post-COVID-19 and ME/CFS Patients

Abstract:

The coronavirus disease caused by the SARS-CoV-2 virus (COVID-19) pandemic has changed not only global epidemiological and economic developments but also the lives of every individual, with particular severity for patients.

The number of acute illness cases grew rapidly, significantly increasing the workload of hospitals, and simultaneously, new chronic diseases emerged, such as persistent post-COVID-19 syndrome (PPCS), with unclear etiology, symptoms, and complexity—similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Accordingly, the burden of chronic diseases poses new long-term challenges for primary healthcare and requires new approaches to patient care.

This chapter provides insight into the integrative approach to healthcare and focuses on potentially new solutions by implementing an integrative attitude to the treatment of post-COVID-19 and ME/CFS patients in primary healthcare.

Integrative health coaching contributes the holistic approach to patients’ overall health and resilience through cognitive practice and patient active engagement. The findings of this chapter can enrich the person-centered approach and healthcare system strengthening through holistic measures and systems thinking.

Source: Diana Araja, Angelika Krumina, Uldis Berkis, Zaiga Nora-Krukle and Modra Murovska. The Advantages of an Integrative Approach in the Primary Healthcare of Post-COVID-19 and ME/CFS Patients. DOI: 10.5772/intechopen.106013  https://www.intechopen.com/online-first/82708 (Full text)

Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research Model

Abstract:

Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who are able to attend clinics. It is estimated that 25% of people with ME/CFS are severely, or very severely, affected and are housebound or bedbound; some require tube feeding. Due to the severity of their illness, these patients have largely been excluded from research and are often described as ‘hard to reach.’ A questionnaire was devised to gather data about their experiences of accessing tube feeding. By making the necessary reasonable adjustments, such as direct outreach and the option to complete the questionnaire by telephone or texting, very severely affected patients were enabled to participate and provided invaluable contributions. This study aimed to act as a model for future researchers.
Source: Baxter H. Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research Model. Healthcare. 2022; 10(7):1278. https://doi.org/10.3390/healthcare10071278  https://www.mdpi.com/2227-9032/10/7/1278 (Full text)

COVID-19 Pandemic-Revealed Consistencies and Inconsistencies in Healthcare: A Medical and Organizational View

Abstract:

The circumstances of the Coronavirus disease caused by the SARS-CoV-2 virus (COVID-19) pandemic have had a significant impact on global and national developments, affecting the existence of society in all its expressions, as well as the lives of people themselves. In the context of the pandemic, increased attention has been focused on acute measures, but the ending of the pandemic is expected as a resolution of the related healthcare problems. However, there are several indicators that the COVID-19 pandemic might induce long-term consequences for individual and public health. Some of the consequences are inferred and predictable, but there are also areas of medicine that have been indirectly affected by the pandemic, and these consequences have not yet been sufficiently explored.

This study is focused on drawing attention to some of the COVID-19 pandemic consistencies and the pandemic-revealed inconsistencies in healthcare. Content analysis and statistical analysis were applied to achieve the aim of the study. The main findings of the study address chronic disease burden (particularly, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)), healthcare governance and organizational issues, and the synergy between health policy perspectives and innovative solutions in practice.

The study provides insight into the particular healthcare issues affected by the COVID-19 pandemic, such as the increase in mortality in some diagnoses besides COVID-19 and the possible emergence of a new type of resistance-vaccine-resistance-contemporaneously supporting the identification of the tendencies and currently unnoticed indirect consistencies and inconsistencies revealed by the pandemic.

Source: Araja D, Berkis U, Murovska M. COVID-19 Pandemic-Revealed Consistencies and Inconsistencies in Healthcare: A Medical and Organizational View. Healthcare (Basel). 2022 May 31;10(6):1018. doi: 10.3390/healthcare10061018. PMID: 35742069. https://www.mdpi.com/2227-9032/10/6/1018/htm  (Full text)

Known unknowns, and as yet medically unexplained diseases

Seen from the outside, the process of scientific exploration of diseases seems chaotic and confusing. Indeed, from within, it is tempting to deduce that clinical academics are chaotic and confused.

To be fair, that is an appropriate deduction. Einstein famously said, ‘If we knew what we were doing, it wouldn’t be called research.’ The vast majority of medical research can be compared to solving a particularly complex crossword puzzle. We start with the ‘easy answers’, then progress to the deducible, before staring endlessly at the problems that don’t make sense to us. The hope is that the pieces we already have will enable us to fill the gaps and produce a semblance of sense.

Practising medicine often does not allow this freedom of thought. If the CRP is falling, the antibiotics are working; if it is rising, they’re not; fracture is a fracture; air under the diaphragm represents burst viscera.

Where, then, do we place conditions that we don’t as yet have diagnostic tests for?

Read the rest of this article HERE.

Source: Known unknowns, and as yet medically unexplained diseases by David Strain. BMA, May 12, 2022. https://www.bma.org.uk/news-and-opinion/known-unknowns-and-as-yet-medically-unexplained-diseases

The Journey Towards Becoming Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Patients’ Experiences

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome is a disease that negatively affects patients’ quality of life. Previous research has shown that these patients are commonly not taken seriously when seeking medical attention.

Aim: The aim was to examine the experiences of patients with ME/CFS regarding their interaction with Swedish primary healthcare professionals.

Method: The study used a qualitative and exploratory design, taking place in a specialist clinic in Sweden. Data consisted of interviews with 13 patients with ME/CFS, which were analysed using content analysis.

Findings: For patients, it was Feeling truly connected during the period before they received a diagnosis. Time is an important factor, and in the phase from initial symptoms to diagnosis, Knowledge is power.

Conclusion: Patients with ME/CFS were met with different levels of knowledge and interest from healthcare professionals. These challenges might be related to the relative unawareness and lack of knowledge of the disease and the underlying cultural scepticism still present.

Source: Bo Christer Bertilson., et al. “The Journey Towards Becoming Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Patients’ Experiences”. EC Neurology 14.2 (2022): 49-56.  https://www.ecronicon.com/ecne/pdf/ECNE-14-01012.pdf (Full text as PDF file)

A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

We propose a framework for the treatment, rehabilitation, and research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using a natural history of disease approach to outline the distinct disease stages, with an emphasis on cases following infection to provide insights into prevention.

Moving away from the method of subtyping patients based on the various phenotypic presentations and instead reframing along the lines of disease progression could help with defining the distinct stages of disease, each of which would benefit from large prospective cohort studies to accurately describe the pathological mechanisms taking place therein. With a better understanding of these mechanisms, management and research can be tailored specifically for each disease stage.

Pre-disease and early disease stages call for management strategies that may decrease the risk of long-term morbidity, by focusing on avoidance of further insults, adequate rest to enable recovery, and pacing of activities.

Later disease stages require a more holistic and tailored management approach, with treatment—as this becomes available—targeting the alleviation of symptoms and multi-systemic dysfunction.

More stringent and standardised use of case definitions in research is critical to improve generalisability of results and to create the strong evidence-based policies for management that are currently lacking in ME/CFS.

Source: O’Boyle S, Nacul L, Nacul FE, Mudie K, Kingdon CC, Cliff JM, Clark TG, Dockrell HM and Lacerda EM. A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Front. Med. 8:688159. https://www.frontiersin.org/articles/10.3389/fmed.2021.688159/full (Full text)

Polio Vaccination and Chronic Fatigue Syndrome

Abstract:

Background: Previous research has suggested that enteroviruses may be implicated in the development and persistence of Chronic Fatigue Syndrome (CFS). One method of investigating this topic has been to use a polio vaccination challenge, and a previous study showed that CFS patients had more shedding than healthy controls. There was no effect of the vaccination on the clinical condition or wellbeing of the CFS patients.

Methods: In the previous study, the control group were more likely to have had a recent booster vaccination. This was controlled in the present study, where 18 CFS patients were randomly assigned to vaccination or placebo conditions. Nine healthy volunteers were also given the polio vaccination.

Results: The results confirmed that vaccination had no negative effects on the CFS group. Although there was more virus shedding in the CFS polio group than in the control polio group, this difference was not significant.

Conclusion: This study confirms that polio vaccination is not contraindicated in CFS patients but could not confirm that they are more susceptible to enterovirus infection.

Source: Smith AP and Thomas M. Polio Vaccination and Chronic Fatigue Syndrome. Asian Journal of Research in Infectious Diseases 8(4): 43-49. https://orca.cardiff.ac.uk/146095/1/poliocfs.pdf (Full text)

Survey of people with Myalgic Encephalomyelitis (ME) to explore their use and experiences of physiotherapy services in the UK

Abstract:

250,000 people live with Myalgic Encephalitis (ME) in the UK, this compares to 100,000 living with Multiple Sclerosis. In 2019, a survey by MEAction of 1906 people with ME, identified that over 50% of people who attended specialists ME clinics, employing physiotherapists, were unsatisfied with the services. People with ME (PwME) are also seen in regular musculoskeletal, community, neurological and paediatric physiotherapy services but the views of PwME related to these services are not known. The aim of this present survey, therefore, was to identify the experiences of PwME of physiotherapy services throughout all areas of physiotherapy practice.

Source: Clague-Baker N, Bull, M, Lesile K, Hilliard N. Survey of people with Myalgic Encephalomyelitis (ME) to explore their use and experiences of physiotherapy services in the UK. Physiotherapy, P076, VOLUME 113, SUPPLEMENT 1, E101-E102, DECEMBER 01, 2021. https://www.physiotherapyjournal.com/article/S0031-9406(21)00164-4/fulltext

Caring for the patient with severe or very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. The most severely ill patients may need total care. Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors’ offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it. Recently published clinical guidance provides updated information about ME/CFS but advice on caring for the severely ill is limited. This article is intended to fill that gap.
Based on published clinical guidance and clinical experience, we describe the clinical presentation of severe ME/CFS and provide patient-centered recommendations on diagnosis, assessment and approaches to treatment and management. We also provide suggestions to support the busy provider in caring for these patients by leveraging partnerships with the patient, their caregivers, and other providers and by using technology such as telemedicine. Combined with compassion, humility, and respect for the patient’s experience, such approaches can enable the primary care provider and other healthcare professionals to provide the care these patients require and deserve.
Source: Montoya JG, Dowell TG, Mooney AE, Dimmock ME, Chu L. Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare. 2021; 9(10):1331. https://doi.org/10.3390/healthcare9101331 https://www.mdpi.com/2227-9032/9/10/1331/htm (Full text)