MDPI - Publisher of Open Access Journals

8 pages, 267 KB

Open AccessArticle

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

by Helen Baxter

Healthcare 2022, 10(7), 1278; https://doi.org/10.3390/healthcare10071278 - 10 Jul 2022

Cited by 3 | Viewed by 5709

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. Full article

(This article belongs to the Collection Why Some Patients Never Fully Recover: Post Active Phase of Infection Syndromes (PAPIS))

12 pages, 258 KB

Open AccessPerspective

Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

by Jose G. Montoya, Theresa G. Dowell, Amy E. Mooney, Mary E. Dimmock and Lily Chu

Healthcare 2021, 9(10), 1331; https://doi.org/10.3390/healthcare9101331 - 6 Oct 2021

Cited by 20 | Viewed by 20384

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. Full article

(This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)

19 pages, 1999 KB

Open AccessEditor’s ChoiceArticle

A Comprehensive Examination of Severely Ill ME/CFS Patients

by Chia-Jung Chang, Li-Yuan Hung, Andreas M. Kogelnik, David Kaufman, Raeka S. Aiyar, Angela M. Chu, Julie Wilhelmy, Peng Li, Linda Tannenbaum, Wenzhong Xiao and Ronald W. Davis

Healthcare 2021, 9(10), 1290; https://doi.org/10.3390/healthcare9101290 - 29 Sep 2021

Cited by 26 | Viewed by 22573

Abstract

One in four myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients are estimated to be severely affected by the disease, and these house-bound or bedbound patients are currently understudied. Here, we report a comprehensive examination of the symptoms and clinical laboratory tests of a cohort of severely ill patients and healthy controls. The greatly reduced quality of life of the patients was negatively correlated with clinical depression. The most troublesome symptoms included fatigue (85%), pain (65%), cognitive impairment (50%), orthostatic intolerance (45%), sleep disturbance (35%), post-exertional malaise (30%), and neurosensory disturbance (30%). Sleep profiles and cognitive tests revealed distinctive impairments. Lower morning cortisol level and alterations in its diurnal rhythm were observed in the patients, and antibody and antigen measurements showed no evidence for acute infections by common viral or bacterial pathogens. These results highlight the urgent need of developing molecular diagnostic tests for ME/CFS. In addition, there was a striking similarity in symptoms between long COVID and ME/CFS, suggesting that studies on the mechanism and treatment of ME/CFS may help prevent and treat long COVID and vice versa. Full article

(This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)

► Show Figures

Figure 1

7 pages, 234 KB

Open AccessPerspective

Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS

by Caroline Kingdon, Dionysius Giotas, Luis Nacul and Eliana Lacerda

Healthcare 2020, 8(3), 197; https://doi.org/10.3390/healthcare8030197 - 4 Jul 2020

Cited by 11 | Viewed by 13323

Abstract

Many people with severe Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) commonly receive no care from healthcare professionals, while some have become distanced from all statutory medical services. Paradoxically, it is often the most seriously ill and needy who are the most neglected by those responsible for their healthcare. Reasons for this include tensions around the complexity of making an accurate diagnosis in the absence of a biomarker, the bitter debate about the effectiveness of the few available treatments, and the very real stigma associated with the diagnosis. Illness severity often precludes attendance at healthcare facilities, and if an individual is well enough to be able to attend an appointment, the presentation will not be typical; by definition, patients who are severely affected are home-bound and often confined to bed. We argue that a holistic model, such as ‘‘Compassion in Practice’’, can help with planning appointments and caring for people severely affected by ME/CFS. We show how this can be used to frame meaningful interactions between the healthcare practitioners (HCPs) and the homebound patient. Full article

(This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)

Search Results (4)

Further Information

Guidelines

MDPI Initiatives

Follow MDPI

Saved Queries

Search Filter Reset All

Years

Feature Papers

Subjects

Journals

Article Types

Countries / Regions

Search Results (4)

Further Information

Guidelines

MDPI Initiatives

Follow MDPI