Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care

Abstract

There is a striking lack of systematic knowledge regarding the symptom burden, capacity for activities of daily living, and supportive measures for the most severely ill ME/CFS patients. The present study seeks to address this through a national, Internet-based survey targeting patients with severe and very severe ME/CFS and their carers. Responses from 491 patients were included, with 444 having severe and 47 very severe ME/CFS with the classification based on the best estimate from patient responses. In addition, 95 respondents were reclassified from patients' own classification to moderate and included for comparison. The onset was before 15 years of age for 45% in the very severe and 32% in the severe group. Disease duration was more than 15 years for 19% in the very severe and 27% in the severe group. Patient symptom burden was extensive. The most severely affected were totally bedridden, unable to talk, and experienced dramatic worsening of symptoms after minimal activity or sensory stimuli. Care and assistance from healthcare and social services were often described as insufficient or inadequate, often worsening the symptom load and burden of care. A substantial lack of disease knowledge among healthcare providers in general was reported. Yet approximately 60% in the severe and very severe groups found services provided by occupational therapists and family doctors (general practitioners) helpful, while a smaller proportion experienced appropriate help from other health personnel groups. This indicates that help and support are highly needed and possible to provide. On the other hand, this must be approached carefully, as a substantial number of patients experienced deterioration from contact with healthcare personnel. Family carers described an extensive burden of care with often inadequate help from healthcare providers or municipal authorities. Patient care by family members of very severe ME/CFS patients constituted more than 40 h a week for 71% of this patient group. The carers described a large negative impact on their work and financial situation, and on their mental wellbeing. We conclude that childhood onset was common, burden of disease was extensive, and support from responsible societal health and social support providers was commonly grossly inadequate.

Keywords: ME/CFS; chronic fatigue syndrome; national survey; severe; symptom burden; very severe.

Figure 1

Survey respondents and study participants. Total number of respondents (n = 964), eligible participants (n = 586), the self-reported degree of severity (n = 63 + 523), and the authors’ reclassification based on the functional ADLS into the three final patient groups included in the study: very severe ME/CFS (n = 47), severe ME/CFS (n = 444), and severe-moderate (n = 95), with the last group having ME/CFS in the most severe range of moderate ME/CFS.

Figure 2

Year patient became ill with ME/CFS, not year of diagnosis. (n = 580: very severe = 47, severe = 439, severe-moderate = 94).

Figure 3

Patient description of current disease change over time (n = 579: very severe = 47, severe = 438, severe-moderate = 94).

Figure 4

The association between early onset (<15 years of age) and severity of disease (functional score, ADLS) for the combined group with very severe, severe, or severe-moderate ME/CFS (n = 580). The line “fitted values” is the predicted values for a quadratic regression, with the y-axis showing the likelihood for an onset before the age of 15 years as a function of current severity of disease (ADLS) (x-axis). The shaded area is the 95% confidence interval (CI) of the prediction.

Figure 5

Average capacity for various activities of daily living (ADL) items (n = 580: very severe = 47, severe = 439, severe-moderate = 94). Average score calculated based on the following: 0 = never, 1 = between once or twice a year, 2 = between once a week and once in two months, 3 = several times each week, and 4 = every day.

Figure 6

Average tolerance score for sensory stimuli. (n = 580: very severe = 47, severe = 439, severe-moderate = 94). Average score calculated based on: 0 = does not tolerate at all, 1 = seldom tolerates, 2 = tolerates once in a while, 3 = tolerates, and 4 = tolerates well.

Figure 7

Very severe ME/CFS patients’ experience with various healthcare professionals and institutions. Number of respondents in brackets (39 study respondents out of 47).

Figure 8

Severe ME/CFS patients’ experience with various healthcare professionals and institutions. Number of respondents in brackets (387 study respondents out of 444).

Figure 9

Impact of being a carer for severe and very severe ME/CFS patients (Number of Respondents 167).