Special Issue "ME/CFS – the Severely and Very Severely Affected"

A special issue of Healthcare (ISSN 2227-9032). This special issue belongs to the section "Chronic Care".

Deadline for manuscript submissions: 31 December 2020.

Special Issue Editors

Prof. Kenneth J. Friedman
Website
Guest Editor
1. Laboratory Corporation of America Holdings, Burlington, USA
2. New Jersey Medical School, Rutgers, The State University of New Jersey, USA
Interests: ME/CFS: diagnosis, pathophysiology; clinical care, medical student and healthcare provider education; relationship to other chronic diseases
Dr. Lucinda Bateman
Website
Guest Editor
Bateman Horne Center, Salt Lake City, United States
Interests: Clinical collaboration with all scientists engaged in discovering biomarkers and improving both diagnosis and treatment of ME/CFS
Prof. Kenny Leo De Meirleir
Website
Guest Editor
Professor emeritus Physiology, Pathophysiology and Medicine, Vrije Universiteit Brussel
Interests: the severely ill ME/CFS patients; newly discovered infections in ME/CFS ; chronic zoonotic infections ; immune abnormalities in ME/CFS and their consequences ; the microbiome and intestinal inflammation in ME/CFS and chronic zoonotic infections.

Special Issue Information

Dear Colleagues,

“ME/CFS—The Severely and Very Severely Affected” is a proposed themed Special Issue of Healthcare concerning housebound and bedbound Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients. Our intent is to redefine ME/CFS as the serious disease that it is. Up to this point in time, all literature and case definitions of ME/CFS have excluded severely and very severely affected patients, and diagnosis, patient management, and case definitions have been based on the ambulatory ME/CFS patient. Although never formally studied, it is estimated that twenty-five percent of ME/CFS patients are either severely or very severely affected. What other disease’s diagnosis, patient care, and case definition exclude the most severely ill twenty-five percent?

We aim to document, describe, and promulgate what can and should be done for this hidden patient population. By focusing on the severely affected, it is our hope that the pathophysiological nature of the disease will be better accepted and understood, and effective methods of symptom reduction and patient improvement will be placed in the medical literature. Kenneth J. Friedman, Ph.D. is serving as Guest Editor of the issue, with Drs. Lucinda Bateman and Kenny DeMeirlier serving as co-guest editors. If you would like to consider submitting a manuscript or have questions concerning the submission of a manuscript, please contact the guest editors.

Dr. Kenneth Friedman
Dr. Lucinda Bateman
Prof. Kenny Leo De Meirleir
Guest Editors

Summary Video

"Severe & Very Severe ME / CFS", produced by Natalie Boulton.
https://www.dialogues-mecfs.co.uk/films/severeme/

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 papers will be 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. Healthcare is an international peer-reviewed open access quarterly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 1400 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
  • ME/CFS
  • Chronic Fatigue Syndrome (CFS)
  • Myalgic Encephalomyelitis (ME)
  • severely affected (housebound) patients
  • very severely affected (bedbound) patients

Published Papers (4 papers)

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Research

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Open AccessArticle
Two-Day Cardiopulmonary Exercise Testing in Females with a Severe Grade of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Comparison with Patients with Mild and Moderate Disease
Healthcare 2020, 8(3), 192; https://doi.org/10.3390/healthcare8030192 - 30 Jun 2020
Abstract
Introduction: Effort intolerance along with a prolonged recovery from exercise and post-exertional exacerbation of symptoms are characteristic features of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The gold standard to measure the degree of physical activity intolerance is cardiopulmonary exercise testing (CPET). Multiple studies have [...] Read more.
Introduction: Effort intolerance along with a prolonged recovery from exercise and post-exertional exacerbation of symptoms are characteristic features of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The gold standard to measure the degree of physical activity intolerance is cardiopulmonary exercise testing (CPET). Multiple studies have shown that peak oxygen consumption is reduced in the majority of ME/CFS patients, and that a 2-day CPET protocol further discriminates between ME/CFS patients and sedentary controls. Limited information is present on ME/CFS patients with a severe form of the disease. Therefore, the aim of this study was to compare the effects of a 2-day CPET protocol in female ME/CFS patients with a severe grade of the disease to mildly and moderately affected ME/CFS patients. Methods and results: We studied 82 female patients who had undergone a 2-day CPET protocol. Measures of oxygen consumption (VO2), heart rate (HR) and workload both at peak exercise and at the ventilatory threshold (VT) were collected. ME/CFS disease severity was graded according to the International Consensus Criteria. Thirty-one patients were clinically graded as having mild disease, 31 with moderate and 20 with severe disease. Baseline characteristics did not differ between the 3 groups. Within each severity group, all analyzed CPET parameters (peak VO2, VO2 at VT, peak workload and the workload at VT) decreased significantly from day-1 to day-2 (p-Value between 0.003 and <0.0001). The magnitude of the change in CPET parameters from day-1 to day-2 was similar between mild, moderate, and severe groups, except for the difference in peak workload between mild and severe patients (p = 0.019). The peak workload decreases from day-1 to day-2 was largest in the severe ME/CFS group (−19 (11) %). Conclusion: This relatively large 2-day CPET protocol study confirms previous findings of the reduction of various exercise variables in ME/CFS patients on day-2 testing. This is the first study to demonstrate that disease severity negatively influences exercise capacity in female ME/CFS patients. Finally, this study shows that the deterioration in peak workload from day-1 to day-2 is largest in the severe ME/CFS patient group. Full article
(This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)
Open AccessArticle
Cerebral Blood Flow Is Reduced in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients During Mild Orthostatic Stress Testing: An Exploratory Study at 20 Degrees of Head-Up Tilt Testing
Healthcare 2020, 8(2), 169; https://doi.org/10.3390/healthcare8020169 - 13 Jun 2020
Abstract
Introduction: In a study of 429 adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), we demonstrated that 86% had symptoms of orthostatic intolerance in daily life. Using extracranial Doppler measurements of the internal carotid and vertebral arteries during a 30-min head-up tilt to 70 [...] Read more.
Introduction: In a study of 429 adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), we demonstrated that 86% had symptoms of orthostatic intolerance in daily life. Using extracranial Doppler measurements of the internal carotid and vertebral arteries during a 30-min head-up tilt to 70 degrees, 90% had an abnormal reduction in cerebral blood flow (CBF). A standard head-up tilt test of this duration might not be tolerated by the most severely affected bed-ridden ME/CFS patients. This study examined whether a shorter 15-min test at a lower 20 degree tilt angle would be sufficient to provoke reductions in cerebral blood flow in severe ME/CFS patients. Methods and results: Nineteen severe ME/CFS patients with orthostatic intolerance complaints in daily life were studied: 18 females. The mean (SD) age was 35(14) years, body surface area (BSA) was 1.8(0.2) m2 and BMI was 24.0(5.4) kg/m2. The median disease duration was 14 (IQR 5–18) years. Heart rate increased, and stroke volume index and end-tidal CO2 decreased significantly during the test (p ranging from <0.001 to <0.0001). The cardiac index decreased by 26(7)%: p < 0.0001. CBF decreased from 617(72) to 452(63) mL/min, a 27(5)% decline. All 19 severely affected ME/CFS patients met the criteria for an abnormal CBF reduction. Conclusions: Using a less demanding 20 degree tilt test for 15 min in severe ME/CFS patients resulted in a mean CBF decline of 27%. This is comparable to the mean 26% decline previously noted in less severely affected patients studied during a 30-min 70 degree head-up tilt. These observations have implications for the evaluation and treatment of severely affected individuals with ME/CFS. Full article
(This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)
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Review

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Open AccessFeature PaperReview
The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of Myalgic Encephalomyelitis (ME/CFS): A Report from the European Network on ME/CFS (EUROMENE)
Healthcare 2020, 8(2), 88; https://doi.org/10.3390/healthcare8020088 - 07 Apr 2020
Cited by 1
Abstract
We have developed a Europe-wide approach to investigating the economic impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), facilitating acquisition of information on the economic burden of ME/CFS, and international comparisons of economic costs between countries. The economic burden of ME/CFS in Europe appears [...] Read more.
We have developed a Europe-wide approach to investigating the economic impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), facilitating acquisition of information on the economic burden of ME/CFS, and international comparisons of economic costs between countries. The economic burden of ME/CFS in Europe appears large, with productivity losses most significant, giving scope for substantial savings through effective prevention and treatment. However, economic studies of ME/CFS, including cost-of-illness analyses and economic evaluations of interventions, are problematic due to different, arbitrary case definitions, and unwillingness of doctors to diagnose it. We therefore lack accurate incidence and prevalence data, with no obvious way to estimate costs incurred by undiagnosed patients. Other problems include, as for other conditions, difficulties estimating direct and indirect costs incurred by healthcare systems, patients and families, and heterogeneous healthcare systems and patterns of economic development across countries. We have made recommendations, including use of the Fukuda (CDC-1994) case definition and Canadian Consensus Criteria (CCC), a pan-European common symptom checklist, and implementation of prevalence-based cost-of-illness studies in different countries using an agreed data list. We recommend using purchasing power parities (PPP) to facilitate international comparisons, and EuroQol-5D as a generic measure of health status and multi-attribute utility instrument to inform future economic evaluations in ME/CFS. Full article
(This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)

Other

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Open AccessPerspective
Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS
Healthcare 2020, 8(3), 197; https://doi.org/10.3390/healthcare8030197 (registering DOI) - 04 Jul 2020
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 [...] Read more.
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)
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