Homebound versus Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Conroy, Karl E; Bhatia, Shaun; Islam, Mohammed; Jason, Leonard A.

doi:10.3390/healthcare9020106

Cited by 12 publications

(13 citation statements)

References 35 publications

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“…Other suffering results from long periods of isolation, alienation and loneliness [80]. Conroy, Bhatia, Islam and Jason (2021) found that "next day soreness or fatigue after non-strenuous, everyday activity" and "physically drained or sick after mild activity" were the strongest predictors of reducing victims to 'homebound' status [81].…”

Section: The Nature Of Mus Me and Cfsmentioning

confidence: 99%

“…Scientese discourse is used by PS investigators have created a scientific-sounding narrative without substantive empirical support, appropriating scientific credibility without legitimacy. To consider one representative example, consider the following Abstract 24 from Michael Sharpe's (1991) paper "Psychiatric Management of Post Viral Fatigue Syndrome" in the British Medical Bulletin that states [81]:…”

Section: )mentioning

confidence: 99%

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The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

2022

AEPHR

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The psychosomatic approach to medically unexplained symptoms, myalgic encephalomyelitis and chronic fatigue syndrome (MUS/ME/CFS) is critically reviewed using scientific criteria. Based on the ‘Biopsychosocial Model’, the psychosomatic theory proposes that patients’ dysfunctional beliefs, deconditioning and attentional biases cause or make illness worse, disrupt therapies, and lead to preventable deaths. The evidence reviewed suggests that none of these psychosomatic hypotheses is empirically supported. The lack of robust supportive evidence together with the use of fallacious causal assumptions, inappropriate and harmful therapies, broken scientific principles, repeated methodological flaws and an unwillingness to share data all give the appearance of cargo cult science. The psychosomatic approach needs to be replaced by a scientific, biologically grounded approach to MUS/ME/CFS that can be expected to provide patients with appropriate care and treatments. Patients with MUS/ME/CFS and their families have not been treated with the dignity, respect and care that is their human right. Patients with MUS/ME/CFS and their families could consider a class action legal case against the injuring parties.

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Section: The Nature Of Mus Me and Cfsmentioning

confidence: 99%

Section: )mentioning

confidence: 99%

The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

2022

AEPHR

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“…Recent research studies provide evidence that this classification system is valid and useful [20,21]. Compared to the non-homebound ME/CFS population, homebound patients report more severe and frequent symptoms and greater functional impairment [6].…”

Section: Very Severementioning

confidence: 99%

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

Montoya¹,

Dowell

Mooney³

et al. 2021

Healthcare

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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.

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“…The condition disproportionately affects more women than men [ 1 ] and often follows an episode of viral or bacterial infection [ 2 ]. Once diagnosed, an estimated quarter of patients become bedbound or housebound, and many are unable to work, attend school, or perform daily tasks after 1–2 years [ 3 , 4 ].…”

Section: Introductionmentioning

confidence: 99%

Prevalence of Aspergillus-Derived Mycotoxins (Ochratoxin, Aflatoxin, and Gliotoxin) and Their Distribution in the Urinalysis of ME/CFS Patients

Khorramshahi

Taylor

et al. 2022

IJERPH

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Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a known complex, multi-organ system disorder with a sudden or subacute onset. ME/CFS occurs most commonly among women between 30 and 50 years of age. The current diagnostic criteria of ME/CFS, as defined by the Centers for Disease Control and Prevention, includes: profound fatigue and post-exertional malaise (>6 mo) unrelieved by rest, persistent cognitive impairment or orthostatic intolerance, and chronic unrefreshing sleep. Despite reported associations between ME/CFS onset and exposure to infectious agents (viral, bacterial, or fungal), the pathophysiology of ME/CFS remains unknown. In this prevalence study, we investigated the rates of Aspergillus-derived toxin levels, Aflatoxin (AF), Ochratoxin A (OTA), and Gliotoxin (GT), in the urinalysis of 236 ME/CFS patients with a history of chronic exposure to mold (i.e., from water-damaged buildings). Among ME/CFS patients reporting chronic exposure to mold, we found evidence of exposure in 92.4 percent of patients, with OTA being the most prevalent mycotoxin. Mold distributions (OTA, AF, and GT) in the urinalysis all demonstrated right skewness, while the distribution of age of ME/CFS patients diagnosed showed no deviation from normality. This study aims to provide preliminary, epidemiological evidence among ME/CFS patients who were diagnosed in South Florida with a history of exposure to mycotoxins. Based on these findings, we proposed how future control studies should approach investigating the association between chronic mold exposure and the diagnosis of ME/CFS.

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Homebound versus Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Cited by 12 publications

References 35 publications

The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

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

Prevalence of Aspergillus-Derived Mycotoxins (Ochratoxin, Aflatoxin, and Gliotoxin) and Their Distribution in the Urinalysis of ME/CFS Patients

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