Tag: Denmark

The most severely ill patients with ME/CFS in Denmark

Abstract:

A subset of patients suffering from ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome) are severely ill, bedridden, and dependent on personal care. This study aims to describe the medical and social conditions of the most severely ill patients with ME/CFS in Denmark and the situation of their caregivers.

Qualitative data were collected during 19 home visits to severely ill patients in Denmark. The patients interviewed were characterised by extremely low physical and mental functioning and longstanding illness. Relative to their dire condition, the participants received very little help from medical professionals and health services such as institutions and hospitals. There was an overall negative interaction with psychiatric interventions, and the relations between patients and the health system were generally characterised by mutual distrust. Social services were often dismissed, and obtaining the services was often described as more of a burden than a benefit.

In conclusion, the most severely ill patients with ME/CFS and their caregivers must be characterised as a systematically neglected patient group not comparable to any other similarly ill group.

Source: la Cour, P. (2024). The most severely ill patients with ME/CFS in Denmark. Cogent Public Health, 11(1). https://doi.org/10.1080/27707571.2024.2359958 https://www.tandfonline.com/doi/full/10.1080/27707571.2024.2359958 (Full text)

The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

Abstract:

INTRODUCTION: Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a common, severe condition affecting 0.2 to 0.4 per cent of the population. Even so, no recent international EQ-5D based health-related quality of life (HRQoL) estimates exist for ME/CFS patients. The main purpose of this study was to estimate HRQoL scores using the EQ-5D-3L with Danish time trade-off tariffs. Secondary, the aims were to explore whether the results are not influenced by other conditions using regression, to compare the estimates to 20 other conditions and finally to present ME/CFS patient characteristics for use in clinical practice.

MATERIAL AND METHODS: All members of the Danish ME/CFS Patient Association in 2013 (n=319) were asked to fill out a questionnaire including the EQ-5D-3L. From these, 105 ME/CFS patients were identified and gave valid responses. Unadjusted EQ-5D-3L means were calculated and compared to the population mean as well as to the mean of 20 other conditions. Furthermore, adjusted estimates were calculated using ordinary least squares (OLS) regression, adjusting for gender, age, education, and co-morbidity of 18 self-reported conditions. Data from the North Denmark Health Profile 2010 was used as population reference in the regression analysis (n=23,392).

RESULTS: The unadjusted EQ-5D-3L mean of ME/CFS was 0.47 [0.41-0.53] compared to a population mean of 0.85 [0.84-0.86]. The OLS regression estimated a disutility of -0.29 [-0.21;-0.34] for ME/CFS patients in this study. The characteristics of ME/CFS patients are different from the population with respect to gender, relationship, employment etc.

CONCLUSION: The EQ-5D-3L-based HRQoL of ME/CFS is significantly lower than the population mean and the lowest of all the compared conditions. The adjusted analysis confirms that poor HRQoL of ME/CFS is distinctly different from and not a proxy of the other included conditions. However, further studies are needed to exclude the possible selection bias of the current study.

 

Source: Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS One. 2015 Jul 6;10(7):e0132421. doi: 10.1371/journal.pone.0132421. ECollection 2015. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4492975/ (Full article)

 

Illness and disability in Danish Chronic Fatigue Syndrome patients at diagnosis and 5-year follow-up

Abstract:

OBJECTIVE: Evaluation of the life impact of Chronic Fatigue Syndrome (CFS) over 5 years.

METHODS: Thirty-three adult patients meeting 1988 and 1994 CDC case criteria answered identical questionnaires at diagnosis and 5 years later, when a retrospective questionnaire was also completed.

RESULTS: Work disability was very high and increased further, social isolation remained high, emotional adjustment improved. There were increased problems with reading and with allergies. Two measures of improvement were used: The relation between these measures was weak. Length of illness, extent of disability and emotional adjustment were poorly related to measures of improvement. Average illness scores were unchanged, but most individuals improved in some ways while worsening or remaining the same in others. Only one participant (3%) neared recovery, one other was substantially better but still severely disabled.

CONCLUSION: CFS patients exhibit severe, long-term functional impairment. Substantial improvement is uncommon, less than 6%. Allergies and aspects of cognition may worsen, emotional adjustment often improves.

 

Source: Andersen MM, Permin H, Albrecht F. Illness and disability in Danish Chronic Fatigue Syndrome patients at diagnosis and 5-year follow-up. J Psychosom Res. 2004 Feb;56(2):217-29. http://www.ncbi.nlm.nih.gov/pubmed/15016582

 

Search for Borna disease virus in Danish fibromyalgia patients

Abstract:

OBJECTIVE: The purpose of this study was to look for Borna disease virus (BDV) in 18 patients with acute onset of fibromyalgia (FMS) following a “flu-like” episode. BDV is a neurotropic RNA virus affecting horses and sheep. Infections in animals have been reported to cause immune mediated disease characterized by abnormalities in behavior. A possible link between BDV and neuropsychiatric diseases in man has been described, and lately a connection to chronic fatigue syndrome (CFS) has been suggested.

METHODS: A BDV-specific nested PCR (RT-PCR) was performed on serum and spinal fluid.

RESULTS: The BDV genome was not detected in any of the FMS cases.

CONCLUSION: Although BDV was not demonstrated in spinal fluid or serum from the tested patients with FMS, we believe that it is important to report our results, since FMS can exhibit many manifestations in common with CFS. Possible reasons for the discrepant findings are discussed.

 

Source: Wittrup IH, Christensen LS, Jensen B, Danneskiold-Samsee B, Bliddal H, Wiik A. Search for Borna disease virus in Danish fibromyalgia patients. Scand J Rheumatol. 2000;29(6):387-90. http://www.ncbi.nlm.nih.gov/pubmed/11132208