Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS: Kingdon et al 2020

[Sly Saint]

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.

full text download
https://www.mdpi.com/2227-9032/8/3/197

eta:
(This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)

 

[ME/CFS Skeptic]

Interesting Article. Not really research, more a description of what severe ME/CFS looks like. If you or a loved one are suffering from the most severe form of ME/CFS and doctors or nurses have difficulty understanding the severity of the illness but seem willing to learn more, this might be a useful article to share.

Twitter thread with quotes:



2) “Some people with severe ME/CFS may lie in a darkened room with earplugs in and may exhibit increased sensitivity to light, sound and touch, struggle to share information or be so wary of PEM that they are fearful of articulating the things that they want or need to share”

3) “People with severe ME/CFS may only be able to stand (e) for a few moments, if at all, and signs of weakness may be obvious. Handgrip measures are markedly reduced in the severely affected and rapidly decline when repeated.”

4) “Apart from frailty, physical examination generally reveals little, and blood work, important to exclude other diagnoses, is often normal. “

5) “Some severely affected individuals may appear undernourished; this often follows food intolerance and allergies (o) and is rarely a manifestation of anorexia nervosa.”

6) “When planning the visit to the person with severe ME/CFS, the HCP should avoid smoking or the use of perfumes or fragranced lotions, as sensitivities to chemicals or odours (l) are common”

7) “PWME are often better informed about the disease than the visiting practitioner” […] This can challenge the practitioner used to steering the therapeutic relationship who may need to acknowledge their limitations”

8) “Taking a proactive stance with their own health differentiates PWME from people with clinical depression, and HCPs need to understand that it is the disease that inhibits activity rather than lack of motivation.”

9) The therapies and alternative treatments that people with severe ME/CFS sometimes embrace can seem unscientific to the HCP [healthcare practitioner], but are sometimes turned to out of desperation;

10) Living with severe ME/CFS requires enormous courage. The inevitable reduction or loss of a societal role means that people with ME/CFS are unable fully to engage with family and friends.

11) “Not only do people with severe ME/CFS have to come to terms with a long-term, disabling illness, but they may also have to cope with doubts about its authenticity.”

12) “Paradoxically, it is often the most seriously ill and needy who are the most neglected by those responsible for their healthcare”