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Healthcare, Special Issue: ME/CFS ― The Severely and Very Severely Affected
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==Opinion and Perspective== *[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]<ref name="Montoya2021">{{Cite journal | last = Montoya | first = Jose G. | authorlink = Jose Montoya | last2 = Dowell | first2 = Theresa G. | authorlink2 = | last3 = Mooney | first3 = Amy E. | authorlink3 = | last4 = Dimmock | first4 = Mary E. | authorlink4 = Mary Dimmock | last5 = Chu | first5 = Lily | authorlink5 = Lily Chu | date = Oct 2021 | title = Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443|journal=Healthcare|language=en|volume=9|issue=10 | pages = 1331|doi=10.3390/healthcare9101331|pmc=PMC8544443|pmid=34683011|access-date=|quote=|via=}}</ref> (Oct 6, 2021) by Jose G. Montoya, Theresa G. Dowell, Amy E. Mooney, Mary E. Dimmock and Lily Chu. ''Healthcare 2021, 9(10), 1331.'' <blockquote>'''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.</blockquote> *[https://doi.org/10.3390/healthcare9080984 ME/CFS: Past, Present and Future]<ref name="Weir2021">{{Cite journal | last = Weir | first = William | authorlink = William Weir | last2 = Speight | first2 = Nigel | authorlink2 = Nigel Speight | date = Aug 2021 | title = ME/CFS: Past, Present and Future| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8394918|journal=Healthcare|language=en|volume=9|issue=8 | pages = 984|doi=10.3390/healthcare9080984|pmc=PMC8394918|pmid=34442121|access-date=|quote=|via=}}</ref> (Aug 3, 2021) by William Weir and Nigel Speight. ''Healthcare 2021, 9(8), 984.'' <blockquote>'''Abstract -''' This review raises a number of compelling issues related to the condition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Some historical perspective is necessary in order to highlight the nature of the controversy concerning its causation. Throughout history, a pattern tends to repeat itself when natural phenomena require explanation. Dogma usually arrives first, then it is eventually replaced by scientific understanding. The same pattern is unfolding in relation to ME/CFS, but supporters of the psychological dogma surrounding its causation remain stubbornly resistant, even in the face of compelling scientific evidence to the contrary. Acceptance of the latter is not just an academic issue; the route to proper understanding and treatment of ME/CFS is through further scientific research rather than psychological theorisation. Only then will a long-suffering patient group benefit.</blockquote> *[https://doi.org/10.3390/healthcare9050504 Extremely Severe ME/CFS—A Personal Account]<ref name="Dafoe2021">{{Cite journal | last = Dafoe | first = Whitney | authorlink = Whitney Dafoe | date = May 2021 | title = Extremely Severe ME/CFS—A Personal Account| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8145314|journal=Healthcare|language=en|volume=9|issue=5 | pages = 504|doi=10.3390/healthcare9050504|pmc=PMC8145314|pmid=33925566|access-date=|quote=|via=}}</ref> (Apr 27, 2021) by Whitney Dafoe. ''Healthcare 2021, 9(5), 504.'' <blockquote>'''Abstract -''' A personal account from an Extremely Severe Bedridden ME/CFS patient about the experience of living with extremely severe ME/CFS. Illness progression, medical history, description of various aspects of extremely severe ME/CFS and various essays on specific experiences are included.</blockquote> *[https://doi.org/10.3390/healthcare8030197 Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS]<ref name="Kingdon2020">{{Cite journal | last = Kingdon | first = Caroline | authorlink = Caroline Kingdon | last2 = Giotas | first2 = Dionysius | authorlink2 = Dionysius Giotas | last3 = Nacul | first3 = Luis | authorlink3 = Luis Nacul | last4 = Lacerda | first4 = Eliana | authorlink4 = Eliana Lacerda | date = Sep 2020 | title = Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS| url = https://www.mdpi.com/2227-9032/8/3/197|journal=Healthcare|language=en|volume=8|issue=3 | pages = 197|doi=10.3390/healthcare8030197|pmc=PMC7551603|pmid=32635535|access-date=|quote=|via=}}</ref> (Jul 4, 2020) by Caroline Kingdon, Dionysius Giotas, Luis Nacul and Eliana Lacerda. ''Healthcare 2020, 8(3), 197.'' <blockquote>'''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.</blockquote>
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