From Expert Review of Clinical Pharmacology, 5 April 2016. [Epub ahead of print].
Efficacy of rintatolimod in the treatment of chronic fatigue syndrome/ myalgic encephalomyelitis (cfs/me).
Department of Pathology, Microbiology & Immunology, Vanderbilt University.
Chronic fatigue syndrome/ Myalgic encephalomyelitis (CFS/ME) is a poorly understood seriously debilitating disorder in which disabling fatigue is an universal symptom in combination with a variety of variable symptoms.
The only drug in advanced clinical development is rintatolimod, a mismatched double stranded polymer of RNA (dsRNA).
Rintatolimod is a restricted Toll-Like Receptor 3 (TLR3) agonist lacking activation of other primary cellular inducers of innate immunity (e.g.- cytosolic helicases).Rintatolimod also activates interferon induced proteins that require dsRNA for activity (e.g.- 2′-5′ adenylate synthetase, protein kinase R).
Rintatolimod has achieved statistically significant improvements in primary endpoints in Phase II and Phase III double-blind, randomized, placebo-controlled clinical trials with a generally well tolerated safety profile and supported by open-label trials in the United States and Europe.
The chemistry, mechanism of action, clinical trial data, and current regulatory status of rintatolimod for CFS/ME including current evidence for etiology of the syndrome are reviewed.
From BMJ Open, 4 April 2016.
Health services research
How do women with chronic fatigue syndrome/myalgic encephalomyelitis rate quality and coordination of healthcare services? A cross-sectional study
Anne Helen Hansen(1), Olaug S Lian(2)
1) Faculty of Health Sciences, Department of Community Medicine, UiT The Arctic University of Norway and Norwegian Centre for Integrated Care and Telemedicine, University Hospital of North Norway, Tromsø, Norway
2) Faculty of Health Sciences, Department of Community Medicine, UiT The Arctic University of Norway, Tromsø, Norway
Correspondence to Dr Anne Helen Hansen; email@example.com
To test the association between self-rated health and self-rated degree of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and CFS/ME patients' assessment of quality of primary care, specialist care and coordination of care.
Self-reported questionnaire data from women members of The Norwegian ME Association obtained in 2013.
431 women with CFS/ME aged 16–73 years.
MAIN OUTCOME MEASURE
The participants' assessment of quality in primary care, specialist care and in coordination of care (good/very good or poor/very poor). Main explanatory variables: self-rated health and self-rated degree of CFS/ME.
Quality of care was rated poor by 60.6% in primary care, by 47.7% in specialist care, and by 71.2% regarding coordination of care.
Poorer self-rated health increased the probability of rating quality in primary care poor, particularly among women 40 years and over (OR 2.38, 95% CI 1.63 to 3.49), women with university education (OR 2.57, CI 1.68 to 3.94), and owing to less frequent general practitioner (GP) visits (OR 2.46, CI 1.60 to 3.78). P
oorer self-rated health increased the probability of rating quality poor in specialist care (OR 1.38, CI 1.05 to 1.82), but not in coordination of care. A more severe CFS/ME was associated with a higher probability of rating quality in primary care poor (OR 0.61, CI 0.38 to 0.93).
Frequent visitors and those with a long GP relationship were less likely to report primary care quality as poor.
A large proportion of women with CFS/ME rated quality of care poor/very poor in primary care, specialist care and in coordination of care. The dissatisfaction was higher for primary care than for specialist care.
Overall, poorer self-rated health and a more severe CFS/ME were associated with lower quality scores in primary and specialist care, but not in coordination of care. Healthcare services, as assessed by women with CFS/ME, do have a large potential for improvement.
From the Journal of Medical Humanities, published online 8 April 2016.
Generating a Social Movement Online Community through an Online Discourse: The Case of Myalgic Encephalomyelitis
Olaug S. Lian(1), Jan Grue(2)
1) Department of Community Medicine, Faculty of Health Sciences, University of Tromsø – The Arctic University of Norway, 9037, Tromsø, Norway
2) Department of Special Needs Education, University of Oslo, 0318, Oslo, Norway
Email correspondent firstname.lastname@example.org
Online communities, created and sustained by people sharing and discussing texts on the internet, play an increasingly important role in social health movements.
In this essay, we explore a collective mobilization in miniature through an in-depth analysis of two satiric texts from an online community for people with myalgic encephalomyelitis (ME).
By blending a sociological analysis with a rhetorical exploration of these texts, our aim is to grasp the discursive generation of a social movement online community set up by sufferers themselves to negotiate and contest the dominating biomedical perception of their condition.