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Research description

Project title: Improving Management and Diagnostic Process in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and its Associated Disorders

Head of project (PI): Bo Christer Bertilson, Department of Neurobiology, Care Sciences and Society; Division of Family Medicine and Primary Care

Contact information: Gabriella Bernhoff, gabriella.bernhoff@ki.se

Project start date: October 2018

Is the project completed? No

Background: At the Bragée ME-Center, where the PhD students work, evaluations are offered to sick patients with possible myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) referred from all of Sweden. ME/CFS affects about 1% of Americans and can be defined as debilitating fatigue and widespread pain for 6 months in the absence of systemic disease. Common associated disorders are fibromyalgia, irritable bowel syndrome (IBS) and chronic symptoms after head and neck trauma. The cause of ME/CFS is still not known. ME/CFS shall be managed primarily within primary care according to Stockholm County Council guidelines, through a thorough medical history, physical examination and laboratory tests. However, current processes are often not structured enough and ME/CFS can be psychologized to the disadvantage of patients.

Aim: The overall aim of the PhD project is to make a contribution to the development of improved management and diagnostic process in primary care for ME/CFS and its associated disorders, and the goal is to reduce patient suffering and health care costs. Other aims are to describe the occurrence of cervical nerve affection among patients who are investigated for ME/CFS; to examine the usability of a discomfort drawing as a diagnostic tool to identify instability/nerve affection; to examine to what extent characteristic radiological findings can be identified for ME/CFS and its associated disorders. Project benefits are that a pain analysis will be made more frequently and in a more structured way for these patients. Eventually this can get the right treatment as soon as possible to people with chronic and hard to treat conditions.

Methods: The project is a clinical study with research questions mainly related to the extent of occurrence of cervical nerve affection among patients referred for investigation at Bragée ME-Center. Study variables are those included in the clinic’s regular assessment, such as the area of symptoms and quality of life (measured with discomfort drawing and EQ5D respectively), and structural changes in the cervical spine (measured with MRI).

Results: No results available.

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