Consumer-researcher seminar series
As people who have suffered these fatigue syndromes, the Consumer Advisory Group (CAG) to COFFI expressed the need for a scientifically informed dialogue to understand fatigue conditions biologically, and to examine possible routes to recovery. We wanted better understanding of the experts in COFFI and others in the field.
The CAG met in June 2023 and first generated a series of questions for the scientists to help answer, in an iterative process to encourage dialogue and understanding on both sides. and then decided to open this up to a Consumer-Researcher seminar series on-line.
We decided to open this up with a seminar series on-line, and the first of these was held in November 2023, and the links are below.
Background
As informed consumers, we were staggered to find that there is a huge literature out there on mind-body, neural pathway disorders. This is in both popular self-help books, but also in specialist medical journals, and there isn’t a comprehensive synthesis that takes this all into account.
On top of this, there is also a diverse scientific literature on how the brain and body interact with whole journals on topics such as psychoneuroimmunology, psychoneuroendocrinology; and studies in mainstream basic science journals, brain science journals, and psychology. If indeed chronic fatigue syndromes are related to complex relationships between the brain, the endocrine, nervous, muscular, gut and other body systems, then understanding this biology, and the way thoughts and the mind may interact with these systems, is important for everyone. For research groups, this is obviously critical in investigating fatigue, and there will be high levels of knowledge in such a group, so being able to develop a narrative that is a bit more rigorous than the self-help books but also accessible to the informed consumer would be a fantastic long-term goal. For consumers, we know there is literature that suggests simply having an explanation of symptoms sometimes helps patients, so this makes getting accurate narratives developed important.
The COFFI Consumer Group continues to explore this interesting area with the scientists and health professionals in COFFI. This is not under any pretext of pushing one particular interpretation of the causes of chronic fatigue syndromes or possible routes to recovery but opening up a sense of inquiry and dialogue.
Part 1: General concepts on mind-brain-body interactions
Speaker: Per Alf Brodal
Per Brodal is MD and professor emeritus in neurobiology at the University of Oslo, Norway. A main interest through his career has been to bridge the gap between basic neuroscience and clinical medicine. His Textbook "The Central Nervous System" (Oxford University Press), written with this aim, has become a classic in its field. During recent years he has been engaged in trying to understand "medically unexplained conditions" - such as chronic pain, fibromyalgia and chronic fatigue syndrome - in the light of recent neuroscientific findings.
Part 2: Persistent symptoms – conceptual understanding and experimental evidence
Speaker: Omer Van den Bergh
Omer Van den Bergh is emeritus professor of Health Psychology at the University of Leuven, Belgium. He currently has a research affiliation with the Institute of Cognitive Sciences and Technologies (ISTC, Rome) and is a Mercator Fellow at the DFG (German National Research Foundation). His expertise pertains to the relationship between health and behavior. Specific keywords are symptom perception and (respiratory) psychophysiology in response to stress and aversive somatic experiences. He is involved in several international research programs as an advisor.