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Healthcare, Special Issue: ME/CFS ― The Severely and Very Severely Affected
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==Reviews== *[https://doi.org/10.3390/healthcare8020088 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)]<ref name="Pheby2021">{{Cite journal | last = Pheby | first = Derek F.H. | authorlink = Derek Pheby | last2 = Araja | first2 = Diana | authorlink2 = | last3 = Berkis | first3 = Uldis | authorlink3 = | last4 = Brenna | first4 = Elenka | authorlink4 = Elenka Brenna | last5 = Cullinan | first5 = John | authorlink5 = John Cullinan | last6 = de Korwin | first6 = Jean-Dominique | authorlink6 = Jean-Dominique de Korwin | last7 = Gitto | first7 = Lara | authorlink7 = Lara Gitto | last8 = Hughes | first8 = Dyfrig A. | last9 = Hunter | first9 = Rachael M. | date = Jun 2020 | title = 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)| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7349118|journal=Healthcare|language=en|volume=8|issue=2 | pages = 88|doi=10.3390/healthcare8020088|pmc=PMC7349118|pmid=32272608|access-date=|quote=|via=}}</ref> (Apr 7, 2021) by Derek F.H. Pheby, Diana Araja, Uldis Berkis, Elenka Brenna, John Cullinan, Jean-Dominique de Korwin, Lara Gitto, Dyfrig A Hughes, Rachael M Hunter, Dominic Trepel and Xia Wang-Steverding. ''Healthcare 2020, 8(2), 88.'' <blockquote>'''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 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.</blockquote> *[https://doi.org/10.3390/healthcare9050553 Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected]<ref name="Fennell2021">{{Cite journal | last = Fennell | first = Patricia A. | authorlink = Patricia Fennell | last2 = Dorr | first2 = Nancy | authorlink2 = | last3 = George | first3 = Shane S. | authorlink3 = | date = Apr 2021 | title = Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected | url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8150911|journal=Healthcare|language=en|volume=9|issue=5 | pages = 553|doi=10.3390/healthcare9050553|pmc=PMC8150911|pmid=34065069|access-date=|quote=|via=}}</ref> (May 9, 2021) by Patricia A. Fennell, Nancy Dorr and Shane S. George. ''Healthcare 2021, 9(5), 553.'' <blockquote>'''Abstract:''' People who are severely and very severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness. This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness. Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS. A composite case example is used to illustrate the lives of severely and very severely affected patients. Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.</blockquote> *[https://doi.org/10.3390/healthcare9060627 The Impact of Severe ME/CFS on Student Learning and K–12 Educational Limitations]<ref name="Newton2021">{{Cite journal | last = Newton | first = Faith R. | authorlink = | date = Jun 2021 | title = The Impact of Severe ME/CFS on Student Learning and K–12 Educational Limitations| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8225090|journal=Healthcare|language=en|volume=9|issue=6 | pages = 627|doi=10.3390/healthcare9060627|pmc=PMC8225090|pmid=34070286|access-date=|quote=|via=}}</ref> (May 25, 2021) by Faith R. Newton. ''Healthcare 2021, 9(6), 627.'' <blockquote>'''Abstract -''' Children with ME/CFS who are severely ill are bedbound and homebound, and oftentimes also wheelchair-dependent. Very seriously affected children are often too sick for doctor’s office visits, let alone school attendance. The most recent data estimate that 2–5% of children may be severely affected or bedridden. However, there is no recent research that confirms these numbers. The severely ill receive little help from their schools, and are socially isolated. This article outlines several suggestions for the type of education that students with ME/CFS should be receiving and develops a preliminary sketch of the web of resources and emergent techniques necessary to achieve these outcomes.</blockquote> *[https://doi.org/10.3390/healthcare9060629 Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]<ref name="Chu2021-suicidality">{{Cite journal | last = Chu | first = Lily | authorlink = Lily Chu | last2 = Elliott | first2 = Meghan | authorlink2 = | last3 = Stein | first3 = Eleanor | authorlink3 = Eleanor Stein | last4 = Jason | first4 = Leonard A. | authorlink4 = Leonard Jason | date = 2021-05-25 | title = Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8227525/|journal=Healthcare|volume=9|issue=6 | pages = 629|doi=10.3390/healthcare9060629|issn=2227-9032|pmc=8227525|pmid=34070367|access-date=|quote=|via=}}</ref> (May 25, 2021) by Lily Chu, Meghan Elliott, Eleanor Stein and Leonard A. Jason. ''Healthcare 2021, 9(6), 629.'' <blockquote>'''Abstract -''' Adult patients affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are at an increased risk of death by suicide. Based on the scientific literature and our clinical/research experiences, we identify risk and protective factors and provide a guide to assessing and managing suicidality in an outpatient medical setting. A clinical case is used to illustrate how information from this article can be applied. Characteristics of ME/CFS that make addressing suicidality challenging include absence of any disease-modifying treatments, severe functional limitations, and symptoms which limit therapies. Decades-long misattribution of ME/CFS to physical deconditioning or psychiatric disorders have resulted in undereducated healthcare professionals, public stigma, and unsupportive social interactions. Consequently, some patients may be reluctant to engage with mental health care. Outpatient medical professionals play a vital role in mitigating these effects. By combining evidence-based interventions aimed at all suicidal patients with those adapted to individual patients’ circumstances, suffering and suicidality can be alleviated in ME/CFS. Increased access to newer virtual or asynchronous modalities of psychiatric/psychological care, especially for severely ill patients, may be a silver lining of the COVID-19 pandemic.</blockquote> *[https://doi.org/10.3390/healthcare8040413 The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]<ref name="Boulazreg2021">{{Cite journal | last = Boulazreg | first = Samir | authorlink = | last2 = Rokach | first2 = Ami | authorlink2 = | date = Dec 2020 | title = The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7711762|journal=Healthcare|language=en|volume=8|issue=4 | pages = 413|doi=10.3390/healthcare8040413|pmc=PMC7711762|pmid=33092097|access-date=|quote=|via=}}</ref> (Oct 20, 2021) by Samir Boulazreg and Ami Rokach. ''Healthcare 2020, 8(4), 413.'' <blockquote>'''Abstract - ''' This article provides a narrative review on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through a psychosocial lens and examines how this impairment affects its sufferers during adolescence and adulthood, as well as how it impacts family caregivers and healthcare professionals' mental health. Since there has been a lack of investigation in the literature, the primary psychosocial stressor that this review focuses on is loneliness. As such, and in an attempt to help establish a theoretical framework regarding how loneliness may impact ME/CFS, loneliness is comprehensively reviewed, and its relation to chronic illness is described. We conclude by discussing a variety of coping strategies that may be employed by ME/CFS individuals to address their loneliness. Future directions and ways with which the literature may investigate loneliness and ME/CFS are discussed.</blockquote> * 2021, [https://doi.org/10.3390/healthcare9111546 Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]<ref name="Brownlie2021">{{Cite journal | title = Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | date = 2021-11-12| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8623195|journal=Healthcare|volume=9|issue=11 | pages = 1546 | last = Brownlie | first = Helen | authorlink = | last2 = Speight | first2 = Nigel | authorlink2 = Nigel Speight|doi=10.3390/healthcare9111546|pmc=PMC8623195|pmid=34828592|access-date=|issn=2227-9032|quote=|via=}}</ref> - (Nov 12, 2021) by Helen Brownlie and Nigel Speight. ''Healthcare 2021, 9(11), 1546.'' <blockquote>'''Abstract - ''' The findings of controlled trials on use of intravenous immunoglobulin G (IV IgG) to treat myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are generally viewed as representing mixed results. On detailed review, a clearer picture emerges, which suggests that the potential therapeutic value of this intervention has been underestimated. Our analysis is consistent with the propositions that: (1) IgG is highly effective for a proportion of patients with severe and well-characterised ME/CFS; (2) responders can be predicted with a high degree of accuracy based on markers of immune dysfunction. Rigorous steps were taken in the research trials to record adverse events, with transient symptom exacerbation commonly experienced in both intervention and placebo control groups, suggesting that this reflected the impact of participation on people with an illness characterised by post-exertional symptom exacerbation. Worsening of certain specific symptoms, notably headache, did occur more commonly with IgG and may have been concomitant to effective treatment, being associated with clinical improvement. The findings emerging from this review are supported by clinical observations relating to treatment of patients with severe and very severe ME/CFS, for whom intramuscular and subcutaneous administration provide alternative options. We conclude that: (1) there is a strong case for this area of research to be revived; (2) pending further research, clinicians would be justified in offering a course of IgG to selected ME/CFS patients at the more severe end of the spectrum. As the majority of trial participants had experienced an acute viral or viral-like onset, we further suggest that IgG treatment may be pertinent to the care of some patients who remain ill following infection with SARS-CoV-2 virus.</blockquote> ===Systematic Review=== *[https://doi.org/10.3390/healthcare9050568 Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]<ref name="Maksoud2021">{{Cite journal | last = Maksoud | first = Rebekah | authorlink = | last2 = Eaton-Fitch | first2 = Natalie | author2-link= | last3 = Matula | first3 = Michael | authorlink3 = | last4 = Cabanas | first4 = Hélène | authorlink4 = Hélène Cabanas | last5 = Staines | first5 = Donald | authorlink5 = Donald Staines | last6 = Marshall-Gradisnik | first6 = Sonya | authorlink6 = Sonya Marshall-Gradisnik | date = May 2021 | title = Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome| url = https://www.ncbi.nlm.nih.gov/pmc/articles/pmc8150292/|journal=Healthcare|language=en|volume=9|issue=5 | pages = 568|doi=10.3390/healthcare9050568|pmc=PMC8150292|pmid=34065013|access-date=|quote=|via=}}</ref> (May 11, 2021) by Rebekah Maksoud, Natalie Eaton-Fitch, Michael Matula, Hélène Cabanas, Donald Staines and Sonya Marshall-Gradisnik. ''Healthcare 2021, 9(5), 568.'' <blockquote>'''Background -''' Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multifaceted illness characterized by profound and persistent fatigue unrelieved by rest along with a range of other debilitating symptoms. Experiences of unrefreshing and disturbed sleep are frequently described by ME/CFS patients. This is the first systematic review assessing sleep characteristics in ME/CFS. The aim of this review is to determine whether there are clinical characteristics of sleep in ME/CFS patients compared to healthy controls using objective measures such as polysomnography and multiple sleep latency testing.<br>'''Methods -''' the following databases—Pubmed, Embase, Medline (EBSCO host) and Web of Science, were systematically searched for journal articles published between January 1994 to 19 February 2021. Articles that referred to polysomnography or multiple sleep latency testing and ME/CFS patients were selected, and further refined through use of specific inclusion and exclusion criteria. Quality and bias were measured using the Joanna Briggs Institute checklist.<br>'''Results - '''twenty observational studies were included in this review. The studies investigated objective measures of sleep quality in ME/CFS. Subjective measures including perceived sleep quality and other quality of life factors were also described.<br>'''Conclusions -''' Many of the parameters measured including slow- wave sleep, apnea- hypopnea index, spectral activity and multiple sleep latency testing were inconsistent across the studies. The available research on sleep quality in ME/CFS was also limited by recruitment decisions, confounding factors, small sample sizes and non-replicated findings. Future well-designed studies are required to understand sleep quality in ME/CFS patients.</blockquote>
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