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.