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.
Highlights
Responsibility and compassion should guide all interactions between healthcare practitioners (HCPs) and patients and are critical to the therapeutic relationship; they are important when HCPs interact with people with severe Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS)
Reactive depression and anxiety are common for people with severe ME/CFS as in any long-term, disabling illness, and suicide is a possible outcome in this patient group [24], so the HCP should always be sensitive to signs of deteriorating mental health and treat it appropriately
We believe that compassion is central to the care of people with ME/CFS
Summary
ME/CFS is a complex and multifactorial disease; the World Health Organisation has described. After considering our experiences and insights from these unique encounters in a methodical way, we argue that a holistic model, such as “Compassion in Practice” [16], can help with planning and caring for people severely affected by ME/CFS. We show how this can be used to frame meaningful interactions between the HCPs and the homebound patient. “If my daughter cleans her teeth herself, that is it for a week She can’t do anything more.” (Parent describing F aged 40–49).
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
