Research principles
Medical journals that are dedicated to pathophysiology usually prefer two types of articles: presentations of new important data, and reviews. Scientists who need publications for their academic careers may misinterpret this to be a request: "Use all technologies to reveal as many new abnormalities as possible and interpret them as causally important as possible. Then combine as many of these interpretations as possible." This behaviour entails the risk of producing bubbles – too many, too diffuse and too abstract "causal" abnormalities for too few, too spatially restricted and too concrete symptoms. We suspect that in stuttering and dystonia research this risk may be high because, with the current understanding of brain diseases, the analysis and explanation of peripheral symptoms do not seem to be important for research into the cause of these disorders. Ironically, however, the peripheral symptoms are crucial for the diagnoses of these disorders.
Having technical backgrounds, we think that research into the cause of stuttering and dystonia should be as rational as in car repairs. Therefore we will proceed as follows:
- We will concentrate on the symptoms that really impair patients and that are relevant for the diagnosis of the disorder.
- Using a theoretical approach, we will search first for the smallest possible defect that could cause these symptoms in a system that functions as normally as possible.
- If there is no idea/no common idea about the normal function, we will develop/choose the simplest model of the normal function.
- If the simplest hypothesis is proven to be wrong in practical research, we will again follow these principles and develop the subsequent simplest hypothesis.
Being patients ourselves, we think that ideas and activities in medical research that clearly serve patient interests should be prioritised. Therefore we will proceed as follows:
- If there are forks in the rational research approach (as described above), we will always choose the direction that would be the most helpful
- for prevention,
- for the development of new or better therapies,
- for the social acceptance of symptoms,
- for the freedom of patients to reject therapy without negative social consequences.
- We will not develop theories that could harm patients by stigmatising their symptoms as long as there is an alternative that is scientifically justified.
Following these principles, we have had to formally begin our project by the publication of a theoretical paper in which we ignore the current understanding and develop the most minimalist model for the cause of stuttering and dystonia using a systematic interpretation of symptoms.