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Bias in Health Care Service Experienced by People with Long COVID or Chronic Illness: Lessons for the Public Health and Medical Community

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Health Care Sciences".

Deadline for manuscript submissions: closed (31 December 2024) | Viewed by 15422

Special Issue Editor

Dr. Margot Gage Witvliet

E-Mail Website
Guest Editor
Department of Sociology, Social Work and Criminal Justice, Lamar University, Beaumont, TX 77705, USA
Interests: long COVID; health disparity; health and human rights; medical cannabis; environment and health; social epidemiology

Special Issue Information

Dear Colleagues,

Many people around the world report not being believed by medical professionals when experiencing COVID-19 symptoms. This has been especially evident for women and minority groups. Differences in treatment by medical professionals for people with chronic ‘invisible’ illnesses are not new. Vulnerable groups with invisible illnesses consistently report not being believed by medical professionals, and the COVID-19 pandemic shed light on the rampant bias occurring worldwide in the health care system. More research providing solutions on how to reduce bias in health care is needed.

This Special Issue focuses on bias in health care services experienced by people with long COVID or chronic illness. It will highlight the experiences of various vulnerable groups. The collection of articles aims to encourage discussion around how to recognize and reduce bias in health care. Original research papers, reviews, commentaries, and case reports are welcome. We will accept manuscripts from different scientific fields, including but not limited to social epidemiology, global health, health policy, medical sociology, criminal justice, public health, public health law, and health service research. Research that highlights the extent to which bias in the medical community impacts the health and wellbeing of vulnerable groups from disadvantaged populations will be prioritized.

Dr. Margot Gage Witvliet
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

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Keywords

  • long COVID
  • medical gaslighting
  • gender bias in health care
  • health disparity
  • socioeconomic inequality in health
  • social determinants of health
  • minority health
  • invisible illness (e.g., chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), chronic Lyme diease, fibromyalgia, lupus, mental health)
  • post-viral illnesses
  • vulnerable groups (elderly, children, incarcerated population)

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Published Papers (3 papers)

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13 pages, 577 KiB  
Article
Possible Racial Disparities in the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
by Chloe Lisette Jones and Jarred Younger
Int. J. Environ. Res. Public Health 2025, 22(2), 280; https://doi.org/10.3390/ijerph22020280 - 14 Feb 2025
Viewed by 2504
Abstract
Myalgic encephalomyelitis (ME/CFS) a chronic, disabling illness with no established etiopathology. It has been indicated in some population-based studies that Black and ethnic minority populations are underdiagnosed with ME/CFS. The aims of the present study were to (1) identify the agreement between receiving [...] Read more.
Myalgic encephalomyelitis (ME/CFS) a chronic, disabling illness with no established etiopathology. It has been indicated in some population-based studies that Black and ethnic minority populations are underdiagnosed with ME/CFS. The aims of the present study were to (1) identify the agreement between receiving an ME/CFS diagnosis and meeting diagnostic criteria, (2) identify the demographic characteristics associated with receiving a diagnosis, and (3) explore patient satisfaction with healthcare. Self-reported medical history and symptoms were collected via online survey from respondents with and without fatigue. The agreement between self-reporting an ME/CFS diagnosis and meeting the Center for Disease Control’s (CDC) ME/CFS criteria or Institute of Medicine (IOM) criteria was assessed with Cohen’s kappa. Patient characteristics predicting a physician diagnosis were analyzed with logistic regression. Associations between diagnosis, demographics, and healthcare satisfaction were assessed with chi-square tests of independence. There were 1110 responses. The agreement between meeting ME/CFS criteria and reporting an ME/CFS diagnosis was fair (CDC: κ = 0.29; SE = 0.02; IOM: κ = 0.28, SE = 0.03). White respondents had 2.94 greater odds of being diagnosed with ME/CFS than non-White respondents. Having an ME/CFS diagnosis was associated with dissatisfaction with healthcare (χ2 (3, N = 1063) = 14.17, p = 0.003). The findings suggest racial disparities in the diagnostic processes for ME/CFS. Full article
(This article belongs to the Special Issue Bias in Health Care Service Experienced by People with Long COVID or Chronic Illness: Lessons for the Public Health and Medical Community)
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10 pages, 230 KiB  
Perspective
Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders
by Nancy J. Smyth and Svetlana Blitshteyn
Int. J. Environ. Res. Public Health 2025, 22(2), 275; https://doi.org/10.3390/ijerph22020275 - 13 Feb 2025
Viewed by 8829
Abstract
People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighted, and even dismissed by healthcare professionals. We believe that these adversarial interactions and language [...] Read more.
People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighted, and even dismissed by healthcare professionals. We believe that these adversarial interactions and language are more likely to arise when healthcare professionals are confronting complex chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies. These problematic conversations between practitioners and patients often involve specific words and phrases—termed the “never-words”—can leave patients in significant emotional distress and negatively impact the clinician–patient relationship and recovery. Seeking to prevent these destructive interactions, we review key literature on best practices for difficult clinical conversations and discuss the application of these practices for people with Long COVID, ME/CFS, dysautonomia, and other complex chronic disorders. We provide recommendations for alternative, preferred phrasing to the never-words, which can enhance therapeutic relationship and chronic illness patient care via compassionate, encouraging, and non-judgmental language. Full article
(This article belongs to the Special Issue Bias in Health Care Service Experienced by People with Long COVID or Chronic Illness: Lessons for the Public Health and Medical Community)
9 pages, 278 KiB  
Brief Report
Reaching out to Patients with Long COVID to Better Understand Their Life Experiences and How to Support Their Recovery: A Patient-Oriented Knowledge Sharing Session
by Alexa Pommer, Gayle Halas, Rukmali Mendis, Cindy Campbell, Brenda Semenko, Brandy Stadnyk, Leyda Thalman, Susan Mair, Yue Sun, Neil Johnston and Diana C. Sanchez-Ramirez
Int. J. Environ. Res. Public Health 2024, 21(2), 187; https://doi.org/10.3390/ijerph21020187 - 6 Feb 2024
Viewed by 2983
Abstract
This article reports on participants’ experiences with long COVID-19 (LC) (symptoms, impact, healthcare use, and perceived needs) and satisfaction with a patient-oriented knowledge-sharing session organized by a multidisciplinary team of healthcare professionals, researchers, and a patient partner. Twenty-six participants completed a pre-session survey. [...] Read more.
This article reports on participants’ experiences with long COVID-19 (LC) (symptoms, impact, healthcare use, and perceived needs) and satisfaction with a patient-oriented knowledge-sharing session organized by a multidisciplinary team of healthcare professionals, researchers, and a patient partner. Twenty-six participants completed a pre-session survey. On average, they were 21 months post-COVID-19 infection (SD 10.9); 81% of them were female, and 84% were 40+ years old. The main symptoms reported included fatigue (96%), cognitive problems (92%), and general pain or discomfort (40%). More than half of the participants reported that LC has had a significant impact on their health-related quality of life. Eighty-one percent of the participants reported seeking medical help for their LC symptoms and found the services provided by physical therapists, primary care providers, and acupuncturists to be helpful in managing their condition. Participants would like to have access to healthcare providers and clinics specializing in LC. They liked the session and found the information presented useful. This information helps to better understand the experiences of people living with LC and how to support their recovery. Full article
(This article belongs to the Special Issue Bias in Health Care Service Experienced by People with Long COVID or Chronic Illness: Lessons for the Public Health and Medical Community)
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