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]
Research 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.
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
- Allergies/hypersensitivities
- Gastrointestinal symptoms
- Sickness and nausea [See Table 1 for more information]
Conclusions
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.
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Background: Today, 24% of college and university students are affected by a chronic health condition or disability. Existing support programs, including disability services, within colleges and universities are often unaccustomed to addressing the fluctuating and unpredictable changes in health and functioning faced by students with severe chronic illnesses.
We studied 82 female patients who had undergone a 2-day CPET protocol. Measures of oxygen consumption (VO2), heart rate (HR) and workload both at peak exercise and at the 
Since the end of the 20th century, the Myalgic Encephalomyelitis / Chronic Fatigue Syndrome community tried to create medical credibility and patient visibility for a chronic, controversial disease with many symptoms, no cure, and no diagnostic test. Not taught in medical schools, it relied on television to make itself visible fighting stigma and prejudice, challenging the political system and the philosophical approach we use to think about illness itself, having patients re-appropriate the discourse. Keeping a cultural approach to health communication as a phenomenon that maintains, produces, and transforms health and illnesses, I analyze news, fictional and talk-show programs.
In doing so I will mainly focus on programs that aired at the turn of the century. This is not just for historical reasons, but for two other strong motives: if it’s true that new spaces, like the Internet and social media, opened up and gained strength in the meantime regular TV still maintains a broader and less topic-focused approach that can reach outside the intended foreseeable target audience; also, with regards to ME/CFS, some of the main communication issues are now still the same as in the beginning, and it is worth looking at the roots of how we talked about it to draw inspiration on what worked and what should be done differently.
Terri asked Dr. Anthony Fauci (Director of the National Institute of Allergy and Infectious Diseases and member of the White House Coronavirus Task Force), what NIH is doing to address Covid-19 “long-haulers” risk of developing ME and CFS and pointed out that there has been very little funding invested in research into ME and few medical providers know how to take care of people with ME. There are still no FDA approved drugs to treat ME.
NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID-19. NICE’s guideline on ME/CFS (CG53) was published in 2007, many years before the current pandemic and it should not be assumed that the recommendations apply to people with fatigue following COVID19.
Here we report the results of a randomized, placebo-controlled trial using 
To document the effect of repeated 
