Norway

Research

 * 2017, From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory (FULL TEXT)"Abstract - Background: Municipal drinking water contaminated with the parasite Giardia lamblia in Bergen, Norway, in 2004 caused an outbreak of gastrointestinal infection in 2500 people, according to the Norwegian Prescription Database. In the aftermath a minor group subsequently developed post-infectious fatigue syndrome (PIFS). Persons in this minor group had laboratory-confirmed parasites in their stool samples, and their enteritis had been cured by one or more courses of antibiotic treatment. The study's purpose was to explore how the affected persons experienced the illness trajectory and various PIFS disabilities. Methods: A qualitative design with in-depth interviews was used to obtain first-hand experiences of PIFS. To get an overall understanding of their perceived illness trajectory, the participants were asked to retrospectively rate their functional level at different points in time. A maximum variation sample of adults diagnosed with PIFS according to the international 1994 criteria was recruited from a cohort of persons diagnosed with PIFS at a tertiary Neurology Outpatient Clinic in Western Norway. The sample comprised 19 women and seven men (mean age 41 years, range 26-59). The interviews were fully transcribed and subjected to a qualitative content analysis. Results: All participants had been living healthy lives pre-illness. The time to develop PIFS varied. Multiple disabilities in the physical, cognitive, emotional, neurological, sleep and intolerance domains were described. Everyone more or less dropped out from studies or work, and few needed to be taken care of during the worst period. The severity of these disabilities varied among the participants and during the illness phases. Despite individual variations, an overall pattern of illness trajectory emerged. Five phases were identified: prodromal, downward, turning, upward and chronic phase. All reached a nadir followed by varying degrees of improvement in their functional ability. None regained pre-illness health or personal and professional abilities. Conclusion: The needs of persons with this condition are not met. Early diagnosis and interdisciplinary rehabilitation could be beneficial in altering the downward trajectory at an earlier stage, avoiding the most severe disability and optimising improvement. Enhanced knowledge among health professionals, tailored treatment, rest as needed, financial support and practical help would likely improve prognosis."

Researchers

 * Olav Mella
 * Øystein Fluge
 * Harald Nyland
 * Elin Bolle Strand

Access to care
How many hospitals&doctors, which diagnose and treat M E (estimate): Rehabilitation offers for ME sufferers:

Government Apology to ME/CFS Patients

 * 2011, Norway's Directorate of Health Apologises for Treatment of ME Patients
 * 2015, M.E. awareness news from Norway – PM gave opening speech at awareness event
 * “We haven’t had anything to offer to this group, and they have been met with negligence in the health care system. This is because there have been a lot of prejudices towards this illness; that this is the result of a psychologically, almost wanted illness”, Solberg said in her interview to Norwegian national television, NRK. “It really is a scandal. The patients have been met with a lack of respect just because we haven’t had enough knowledge. The worst thing is that we haven’t worked very hard to get this knowledge either. It is important that the health care system make research on ME a priority”

Patient groups

 * ME-Forskning
 * Norges ME Forening

Notable patients

 * Ellen Piro

Notable advocates and allies

 * Ellen Piro
 * Jørgen Jelstad

Clinicians

 * Harald Nyland