Tag: medical care

Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care

Abstract:

There is a striking lack of systematic knowledge regarding the symptom burden, capacity for activities of daily living, and supportive measures for the most severely ill ME/CFS patients. The present study seeks to address this through a national, Internet-based survey targeting patients with severe and very severe ME/CFS and their carers.
Responses from 491 patients were included, with 444 having severe and 47 very severe ME/CFS with the classification based on the best estimate from patient responses. In addition, 95 respondents were reclassified from patients’ own classification to moderate and included for comparison. The onset was before 15 years of age for 45% in the very severe and 32% in the severe group. Disease duration was more than 15 years for 19% in the very severe and 27% in the severe group. Patient symptom burden was extensive. The most severely affected were totally bedridden, unable to talk, and experienced dramatic worsening of symptoms after minimal activity or sensory stimuli.
Care and assistance from healthcare and social services were often described as insufficient or inadequate, often worsening the symptom load and burden of care. A substantial lack of disease knowledge among healthcare providers in general was reported. Yet approximately 60% in the severe and very severe groups found services provided by occupational therapists and family doctors (general practitioners) helpful, while a smaller proportion experienced appropriate help from other health personnel groups. This indicates that help and support are highly needed and possible to provide. On the other hand, this must be approached carefully, as a substantial number of patients experienced deterioration from contact with healthcare personnel. Family carers described an extensive burden of care with often inadequate help from healthcare providers or municipal authorities.
Patient care by family members of very severe ME/CFS patients constituted more than 40 h a week for 71% of this patient group. The carers described a large negative impact on their work and financial situation, and on their mental wellbeing. We conclude that childhood onset was common, burden of disease was extensive, and support from responsible societal health and social support providers was commonly grossly inadequate.
Source: Sommerfelt K, Schei T, Angelsen A. Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care. Journal of Clinical Medicine. 2023; 12(4):1487. https://doi.org/10.3390/jcm12041487 https://www.mdpi.com/2077-0383/12/4/1487 (Full text)

“I Just Want to Feel Safe Going to a Doctor”: Experiences of Female Patients with Chronic Conditions in Australia

Abstract:

Background: The androcentric history of medicine and medical research has led to an ongoing sex and gender gap in health research and education. Sex and gender gaps in research and education may translate into real-life health inequities for women. This study aimed to explore the experiences of female patients with chronic health conditions in the Australian health system, considering existing sex and gender gaps in medicine.

Methods: This qualitative study used semistructured in-depth interviews with a sample of adult women with chronic conditions in Australia. Thematic analysis was undertaken, guided by Braun and Clarke. Software NVivoX64 assisted in the management of the data. Coding was performed before grouping into subthemes and central themes. To allow for potential researcher biases, the principal researcher engaged in the practice of reflexivity, including the writing of detailed notes during analysis.

Results: Twenty adult Australian women with chronic conditions were interviewed. Diagnoses were varied and included Ehlers-Danlos syndrome, chronic fatigue syndrome, functional neurological disorder, and inflammatory bowel disease. Four central themes emerged: diagnostic difficulties; spectrum of health care experiences; understanding medical complexity; and coping with symptoms.

Conclusions: Women with chronic conditions in Australia report pain, fatigue, and suffering that significantly impacts upon their daily lives. There was a shared experience of feeling that the pain and suffering of women was dismissed or not taken seriously. Many women expressed trauma because of their experiences in health care and often this led to a fear of accessing health services. The participants highlighted a need for more knowledge, understanding, and empathy from health care practitioners.

Source: Merone L, Tsey K, Russell D, Nagle C. “I Just Want to Feel Safe Going to a Doctor”: Experiences of Female Patients with Chronic Conditions in Australia. Womens Health Rep (New Rochelle). 2022 Dec 22;3(1):1016-1028. doi: 10.1089/whr.2022.0052. PMID: 36636320; PMCID: PMC9811844. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9811844/ (Full text)

Doctors’ attitudes toward specific medical conditions

Abstract:

This study uses machine learning and natural language processing tools to examine the language used by healthcare professionals on a global online forum. It contributes to an underdeveloped area of knowledge, that of physician attitudes toward their patients. Using comments left by physicians on Reddit’s ”Medicine” subreddit (r/medicine), we test if the language from online discussions can reveal doctors’ attitudes toward specific medical conditions. We focus on a set of chronic conditions that usually are more stigmatized and compare them to ones well accepted by the medical community.

We discovered that when comparing diseases with similar traits, doctors discussed some conditions with more negative attitudes. These results show bias does not occur only along the dimensions traditionally analyzed in the economics literature of gender and race, but also along the dimension of disease type. This is meaningful because the emotions associated with beliefs impact physicians’ decision making, prescribing behavior, and quality of care. First, we run a binomial LASSO-logistic regression to compare a range of 21 diseases against myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), depression, and the autoimmune diseases multiple sclerosis and rheumatoid arthritis.

Next, we use dictionary methods to compare five more chronic diseases: Lyme disease, Ehlers-Danlos syndrome (EDS), Alzheimer’s disease, osteoporosis, and lupus. The results show physicians discuss ME/CFS, depression, and Lyme disease with more negative language than the other diseases in the set. The results for ME/CFS included over four times more negative words than the results for depression.

Source: Brooke Scoles, Catia Nicodemo. Doctors’ attitudes toward specific medical conditions. Journal of Economic Behavior & Organization, Volume 204, December 2022, Pages 182-199. https://www.sciencedirect.com/science/article/pii/S016726812200347X (Full text)

The long COVID syndrome: A conundrum for the allergist/immunologist

Abstract:

Background: The long coronavirus disease 2019 (COVID-19) syndrome includes a group of patients who, after infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) exhibit lingering mild-to-moderate symptoms and develop medical complications that can have lasting health problems.

Objective: The purpose of this report was to examine the current body of evidence that deals with the relationship of COVID-19 infection with the long COVID syndrome to define the possible immunologic mechanisms involved in the pathogenesis of long COVID and to describe potential strategies for the diagnosis and clinical management of the condition.

Methods: Extensive research was conducted in medical literature data bases by applying terms such as long COVID, post-COVID-19 condition, pathogenesis of long COVID, management of the long COVID syndrome.

Results: The post-COVID conditions, a more recent and less anxiety-inducing term for the patient than long COVID or “long haul,” is an umbrella term for a wide range of physical and mental health symptoms similar to those seen in patients with the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), experienced by some patients and are present ≥ 4 weeks after SARS-CoV-2 infection. Although the precise reason why long COVID develops is unknown, one of the major causes is thought to be related to chronic inflammation with overproduction of inflammatory cytokines responsible for the symptoms of the disorder.

Conclusion: Long COVID is a growing burden for millions of patients, health-care providers, and global health-care systems, and is a particular challenge for the allergist/immunologist. Many survivors of COVID-19 struggle with multiple symptoms, increased disability, reduced function, and poor quality of life. The allergist/immunologist can assist the total health-care team’s efforts in providing a comprehensive and coordinated approach to the management of these patients by promoting comprehensive vaccination and rehabilitation and social services that focus on improving physical, mental, and social well-being, and by establishing partnerships with specialists and other health-care professionals who can provide behavioral, lifestyle, and integrative approaches that may have much to offer in helping patients cope with their symptoms.

Source: Bellanti JA. The long COVID syndrome: A conundrum for the allergist/immunologist. Allergy Asthma Proc. 2022 Sep 1;43(5):368-374. doi: 10.2500/aap.2022.43.220059. PMID: 36065103. https://www.ingentaconnect.com/content/ocean/aap/2022/00000043/00000005/art00007;jsessionid=2d46805mm1b04.x-ic-live-02 (Full text available as PDF file)

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)

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

Caring for the carers: understanding long covid in our diverse healthcare workforce

In the United Kingdom (UK), there have been over 21.4 million confirmed cases of covid-19 as of April 2022.1 Evidence has emerged that some patients are experiencing long term symptoms and complications that extend beyond the acute infection phase, which is now widely known as long covid.23 According to the most recent UK Government’s Office for National Statistics data (April 2021), approximately 1.7 million individuals in the UK reported experiencing covid-19 symptoms for longer than four weeks.4 Of these, 690% had covid-19 for the first time at least 12 weeks previously, and 45% had covid-19 at least a year ago.4

As the covid-19 pandemic has progressed, there has been increasing evidence that healthcare workers, especially those from ethnic minority backgrounds, may be at particularly high risk of poor physical and mental health outcomes.5 This is likely to be attributed to the many challenges that healthcare workers face while working in these circumstances, including the high work demand, shortage of staff, lack of personal protective equipment (PPE), rapid changes in protocols and guidance, and long working hours, as well as their increased risk of covid-19 infection and severe disease.56 As a result, healthcare workers may also be more likely than the general population to be affected by long covid, with a disproportionate burden among ethnic minorities.

Read the rest of this article HERE.

Source: Amani Al-Oraibi, Katherine Woolf, Laura B Nellums, Carolyn Tarrant, Habib Naqvi, Manish Pareek. Caring for the carers: understanding long covid in our diverse healthcare workforce. BMJ 2022;377:o1152 https://www.bmj.com/content/377/bmj.o1152.full (Full text)

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)

Investigating Access to Specialist Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) Services for Ethnic Minority Children

Abstract:

Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a relatively common, complex and disabling condition. CFS/ME is more common in ethnic minority adults, and is likely to be more common in ethnic minority children, but very few ethnic minority children access specialist CFS/ME services.

The aim of this PhD was to explore both the barriers and facilitators ethnic minority children face in accessing CFS/ME services, with an aim to make access more equal. Different methods were used: 1) systematic review, 2) data analysis, 3) qualitative interviews with young people, parents, community ‘influencers’, healthcare professionals, and 4) focus groups with community members.

I conducted a mapping systematic review to: (1) understand barriers ethnic minority children experience when accessing specialist medical services for chronic or mental healthcare conditions, (2) interventions to improve access. This synthesis describes the most common barrier to be ‘Knowledge’ but ‘Cultural Factors’ and ‘Stigma’ were also important. Interventions that focus on reducing multiple access barriers showed the most promise. This review also highlighted the role of facilitators, which informed the PhD.

Data analysis of the baseline characteristics of children who accessed specialist paediatric CFS/ME services and were recruited into a clinical trial showed only 3.93% of children described themselves as an ethnic minority, however data capture methods suggest ethnicity may not be accurately recorded.

Interviews with 25 participants (3 young people with CFS/ME; 5 family members, 14 community leaders and 3 medical professionals), and focus groups with 23 community participants were conducted and thematic analysis identified multiple barriers to accessing CFS/ME services, with three key barriers (‘Conceptualisation of CFS/ME’; ‘Cultural Factors’; and ‘Going to the Doctors’) and few facilitators. Terminology was also important, with “community leaders” declining the term “leader”.

Participants suggested the following ideas to improve access: 1) knowledge and awareness building initiatives to increase understanding of CFS/ME and reduce stigma and 2) healthcare system improvements, including more General Practitioner (GP) consultations, shorter waiting times, and staff of different ethnicities. Future work is needed to pilot these ideas to improve access and develop interventions.

Source: Catherine Linney Bristol Medical School Student thesis: Doctoral Thesis › Doctor of Philosophy (PhD) https://research-information.bris.ac.uk/en/studentTheses/investigating-access-to-specialist-chronic-fatigue-syndrome-myalg  https://research-information.bris.ac.uk/ws/portalfiles/portal/306612306/REDACTED_Final_Copy_2021_12_02_Linney_C_PhD.pdf (Full text)

An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis

Abstract:

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 were asked to complete a questionnaire, enquiring about prior knowledge and experience of ME and their approaches to diagnosis and treatment. A total of 44 completed questionnaires were returned. Responses were tabulated, proportions selecting available options determined, 95% confidence limits calculated, and the significance of associations determined by Fisher’s exact test.

Results: Few respondents had any formal teaching on ME, though most had some experience of it. Few knew how to diagnose it and most lacked confidence in managing it. None of the respondents who had had teaching or prior experience of ME considered it a purely physical illness. Overall, 91% of participants believed ME was at least in part psychological. Most participants responded correctly to a series of propositions about the general epidemiology and chronicity of ME. There was little knowledge of definitions of ME, diagnosis, or of clinical manifestations. Understanding about appropriate management was very deficient. Similarly, there was little appreciation of the impact of the disease on daily living or quality of life. Where some doctors expressed confidence diagnosing or managing ME, this was misplaced as they were incorrect on the nature of ME, its diagnostic criteria and its treatment.

Conclusion: This audit demonstrates that most doctors lack training and clinical expertise in ME. Nevertheless, participants recognised a need for further training and indicated a wish to participate in this. It is strongly recommended that factually correct and up-to-date medical education on ME be made a priority at undergraduate and postgraduate levels. It is also recommended that this audit be repeated following a period of medical education.

Source: Hng KN, Geraghty K, Pheby DFH. An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis. Medicina (Kaunas). 2021 Aug 27;57(9):885. doi: 10.3390/medicina57090885. PMID: 34577808. https://pubmed.ncbi.nlm.nih.gov/34577808/