Supported Self-Management for Mitochondrial Disease

This post is by Keith Meldrum, a collaborator of Pete Moore's on several supported self-management initiatives.

Supported self-management is considered essential for improving health outcomes for people managing long-term conditions. It shifts our role from a passive recipient of care to an active partner, empowering us to manage the physical, emotional, and social impacts of our condition. The key benefits of supported self-management include improved quality of life, increased self-efficacy, reduced health care costs, improved clinical indicators (e.g., blood pressure levels), and improved mental health. While we may not be able to make our long-term condition go away, by working collaboratively with the healthcare system, we can live the best life we can despite our condition.

On April 25th, 2026, I had the honour of presenting at the 1st Supported Self-Management Online Conference. I've collaborated with Pete Moore for many years on pain-supported self-management content for many years, and am really pleased to be working with him as we look at supported self-management for long-term health conditions. I am Canadian, and according to Statistics Canada (2021 data), 45% of Canadians live with at least one long-term health issue. That equates to over 14 million people in Canada.

The following is a summary of my presentation.

Mitochondria are organelles which are subunits within cells and are known as the powerhouse of eukaryotic cells. They produce over 90% of the chemical energy, Adenosine Triphosphate (ATP), by converting food and oxygen into usable fuel, which is necessary to sustain life and support organ function. We can’t live without mitochondria.

Mitochondrial disease is a rare genetic, inherited disease caused by gene mutations affecting approximately 1 in 5,000 globally. IT exists from birth, and is genetic, meaning that the disease is inherited or passed down from one or both parents. On average, it takes 8 years to diagnose a mitochondrial disease. There are no cures, and medications are used only for symptom management.

Symptoms of a mitochondrial disease vary from person to person and depend on the specific disorder. The two most common symptoms are muscle weakness and exercise intolerance. Children may have difficulty developing certain skills, such as sitting, crawling, walking, speaking and learning. The organs most affected include the brain, nerves, heart, pancreas, liver, eyes, and kidneys.

Supported self-management is critically important to help manage mitochondrial disease. Exercise is medicine as it increases the production of mitochondria (biogenesis). The best exercise is strength or resistance training and endurance or aerobic training. Strength training increases the power and size of muscle fibres, stimulates the production of mitochondria, and decreases mitochondrial mutations. Endurance training increases mitochondria in muscle cells and decreases lactate, a metabolic waste product, when mitochondria are not working properly.

However, exercise needs to be carefully balanced as overexertion can lead to rhabdomyolysis, a serious, potentially life-threatening syndrome caused by rapid skeletal muscle breakdown, releasing damaging proteins (myoglobin) into the blood, which can lead to kidney failure and can be fatal.

And importantly, Pacing, prioritizing, planning, and relaxation are fundamental in self-managing a mitochondrial disease.

Further information on mitochondrial disease can be found at the Lily Foundation (United Kingdom), MitoCanada (Canada), and the United Mitochondrial Disease Foundation (United States).