Health Care responsibility and compassion-visiting the housebound patient severely affected by ME/CFS, by Caroline Kingdon, Dionysius Giotas, Luis Nacul and Eliana Lacerda in Healthcare 2020, 8(3), 197 [doi.org/10.3390/healthcare8030197]
[This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected]
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.
Common symptoms affecting people with severe Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) seen by CureME:
- Unrefreshing sleep
- Disabling fatigue
- Sleep problems
- Exercise intolerance (PEM)
- Pain after exertion/activity
- Muscle pain
- Intolerance to standing
- Concentration problems
- Difficulty in finding words
- Difficulty in making decisions
- Brain fog/cognitive dysfunction
- Slow thinking
- Short-term memory problems
- Difficulty in understanding
- Difficulty in retaining information
- Unusual sensitivity to light and/or noise
- New sensitivities to food, medication, chemicals or odours
- Intolerance to heat and cold
- Gastrointestinal symptoms
- Sickness and nausea [See Table 1 for more information]
We believe that compassion is central to the care of people with ME/CFS. Despite the current absence of curative treatments for people with severe ME/CFS, the HCP has a responsibility to provide care through a relationship based on empathy, respect and dignity. By supporting the individual with compassion and competence and acknowledging and learning from the patient’s experience, the encounter with the housebound patient can be both effective and worthwhile.
The first step in the therapeutic relationship is to believe and trust the individual: to articulate that you, the practitioner, hear what your patient is saying and recognise that their experience is legitimate.
This severe, complex multisystem disease has long been misjudged by the healthcare profession. Educating practitioners about the needs of those most severely affected by ME/CFS will help drive the step change in understanding and belief, compassion and empathy required to care for all patients with ME/CFS.