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.

Interdisziplinäres, kollaboratives D-A-CH Konsensus-Statement zur Diagnostik und Behandlung von Myalgischer Enzephalomyelitis/Chronischem Fatigue-Syndrom

“…Zukünftig könnte sich mit dem FUNCAP55 ein hilfreicher Fragebogen etablieren, der zu einer noch besseren Einschätzung der funktionellen Kapazität bei ME/CFS verhilft [ 149 ]. Der FUNCAP55 ist ein Instrument, das zur Beurteilung der funktionellen Leistungsfähigkeit bei ME/CFS entwickelt wurde.…”

One Is the Loneliest N: An Autobiographical Report of Long COVID

“…At 3 months post infection, the author did not display any organ damage or unusual results other than slightly elevated blood cholesterol in a basic blood panel. She meets diagnostic criteria for postural orthostatic tachycardia syndrome (POTS) [13], mast cell activation syndrome (MCAS) [14], and myalgic encephalomyelitis (ME) [15,16]. The author shows signs of immune system dysfunction; her hepatitis B antibody titres were below detectable levels in May 2022, despite completing the primary vaccine course in 2014, and she has frequent illness at a level beyond her previous experience (in the past 2 years: 4 hand foot and mouth virus infections, 5 sinus infections requiring antibiotics, 3 bouts of RSV, 5 colds, and one influenza infection).…”

“…Changes in symptoms are included, and rationale/references provided for each intervention. Over the past 2 years the author has progressed from moderate Long Covid (FUNCAP55 score of 3.42 [15] at 3 months post infection, house-bound and unable to stay awake for longer than 2 hours at a time) to engaging in scientific work part-time and undertaking physiotherapy at least 3 times a week (FUNCAP55 score of 4.22 [15]). These interventions have also alleviated the symptoms of 4 other people with Long Covid whom the author shared her management protocol with, and may be helpful for other patients.…”

Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire

“…Component 1 had high component loadings on FUNCAP27 items (retained numberings from FUNCAP55 with corresponding FUNCAP27 numberings in parenthesis): 1 (1), 5 (2), 7 (3), 8 (4), 15 (7), 18 (9), 33 (15), and 41 (19). Component 2 had high component loadings on the following FUNCAP27 items numbers: 10 (21), 13 (6), 21 (10), 25 (11), 32 (14), 35 (16), 38 (17), 39 (18), 44 (21) and 55 (27). Component 3 had high component loadings on the FUNCAP27 items 46 (22), 48 (23), 51 (24) and 53 (25).…”