Multi-System Chronic Complex Disease
From the Desk of Dr. Danielle Meadows
Vice President of Research Programs & Operations
This month, once again, I want to step outside the bounds of the research process and talk about the term we use at Open Medicine Foundation to describe the kind of condition ME/CFS and Long COVID are: multi-system chronic complex disease. I understand that this is a complicated and sometimes controversial topic, so before I get into it, let me acknowledge that complexity and say that we do our best to reflect the voices and experiences of the people we are trying to serve. I hope that you’ll be able to see that through some of what I mention in this edition of Science Wednesdays.
One important aspect of designing a study is determining the number of participants that will be included. It’s a difficult balance between trying to design a study with the best odds of producing an impactful result and working within the resources available.
At OMF, we try to use our resources wisely, focusing on scientifically rigorous research that has the potential to guide future research and patient care as quickly as possible. Conducting well-powered research is a big part of that mission, so I want to explain a little bit about what that means from a science perspective and how it impacted the design of our first clinical trial.
What is a multi-system chronic complex disease?
While the term multi-system chronic complex disease is perhaps overwhelming at first, each component is relatively straightforward when you break it down. Multi-system is used to indicate that diseases within this group involve multiple systems in the body (e.g., immune system, cardiovascular system, etc.). Chronic is used to show that these diseases affect people for long periods of time (e.g., six months or longer). Finally, complex is included in the term to acknowledge that the diseases can result from a combination of things (e.g., genes, environment), which makes them challenging to understand.
Why use this term for ME/CFS and Long COVID?
Many terms have been used to describe the type of disease ME/CFS and Long COVID are. Multi-system chronic complex disease seems to appropriately encompass the aspects of these conditions that are widely accepted. They are long-term diseases that affect multiple systems in the body and have thus far been challenging to understand. In addition, the term is inclusive of the people that fit the diagnostic criteria for them, including cases that develop from unknown or potentially less common triggers.
At Open Medicine Foundation, our purpose is to revolutionize the way we understand and treat multi-system chronic complex diseases, with initial focus on ME/CFS and Long COVID, by illuminating their mechanisms, accelerating effective treatments, and empowering personalized care. Read more about the research we do on our website.
Impact on Approaching Research
Traditionally, medical care systems and research institutes are set up to study, understand, and treat diseases via specific, singular systems. This approach is not sufficient for addressing a multi-system chronic complex disease, however. Open Medicine Foundation aims to break the traditional mold and remove research siloes via our Collaborative Approach to Systems Research model, bringing together different areas of expertise to create a more holistic approach.
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